COG LTFU Guidelines AppendixII v4

Transcript

1 Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Appendix II Patient Education Materials “Health Links” Version 4.0 October 2013 Copyright 2013 © Children’s Oncology Group All rights reserved worldwide

2 Index to Patient Education Materials (“Health Links”) Health Link – Abbreviated Title Associated Guideline Section(s) Health Link – Full Title Late Effects after Amputation for Childhood Cancer Amputation 120 Bladder Health Bladder Health After Childhood Cancer 17, 18, 92, 93, 94 Bleomycin Alert Bleomycin Alert 35 Keeping Your Bones Healthy after Childhood Cancer 27, 37, 109 Bone Health Breast Cancer Breast Cancer following Treatment for Childhood Cancer: Are You at Risk? 77, 157 Preventing Cardiovascular Complications after Treatment for Childhood Cancer 19, 22, 28, 33, 34, 54, 80, 81, 84, 85, 91, Cardiovascular Risk Factors 110, 127, 128, 133 Cataracts after Treatment for Childhood Cancer 16, 39, 64 Cataracts Central Adrenal Insufficiency Endocrine Problems after Childhood Cancer: Central Adrenal Insufficiency 63 Chronic Pain Chronic Pain after Childhood Cancer 4 Colorectal Cancer Colorectal Cancer Following Treatment for Childhood Cancer: Are You at Risk? 90, 159 Cystectomy and Childhood Cancer Cystectomy 122 Dental Health Following Childhood Cancer Treatment 10, 68, 69, 80, 81, 113, 162 Dental Health Diet and Physical Activity 54, 80, 81, 84, 85, 133 Staying Healthy through Diet and Physical Activity Educational Issues Educational Issues Following Treatment for Childhood Cancer 1, 20, 23, 30, 49, 66, 67, 129 Emotional Issues Emotional Issues after Childhood Cancer 1, 2, 3 Eye Health 65, 112, 123 Keeping Your Eyes Healthy after Treatment for Childhood Cancer Female Health Issues Female Health Issues after Treatment for Childhood Cancer 13, 62, 95, 96, 124, 141, 142 Finding and Paying for Healthcare Finding and Paying for Healthcare after Treatment for Childhood Cancer 6 Gastrointestinal Health Gastrointestinal Health after Treatment for Childhood Cancer 83, 87, 88, 89, 107, 117, 125 Endocrine Problems after Childhood Cancer: Growth Hormone Deficiency Growth Hormone Deficiency 55 Hearing Loss Hearing Loss after Treatment for Childhood Cancer 20, 66, 67 Keeping Your Heart Healthy after Treatment for Childhood Cancer 33, 34, 80, 81 Heart Health 7, 8 Hepatitis Hepatitis after Childhood Cancer Hyperprolactinemia Endocrine Problems after Childhood Cancer: Hyperprolactinemia 58, 59 Hypopituitarism Endocrine Problems after Childhood Cancer: Hypopituitarism 55, 60, 61, 62, 63, 134 1 Introduction to Long-Term Introduction to Long-Term Follow-Up after Treatment for Childhood, Adolescent, or Young Adult Cancer Follow-Up Kidney Health after Childhood Cancer 19, 22, 28, 91, 110, 122, 127, 128 Kidney Health Limb Sparing Procedures 126 Limb Sparing Procedures Liver Health Liver Health after Childhood Cancer 26, 29, 86, 107 Male Health Issues Male Health Issues after Treatment for Childhood Cancer 11, 12, 61, 98, 99, 137, 143, 144, 147 Neurogenic Bladder Neurogenic Bladder Following Treatment for Childhood Cancer 135 Osteonecrosis Osteonecrosis 38, 108 Osteoradionecrosis after Childhood Cancer 70 Osteoradionecrosis Peripheral Neuropathy 21, 41 Peripheral Neuropathy Precocious Puberty Endocrine Problems after Childhood Cancer: Precocious Puberty 56, 57 Pulmonary Health Pulmonary Health 15, 35, 79, 114, 150 Raynaud’s Phenomenon 42 Raynaud’s Phenomenon Reducing Risk of Cancers Reducing the Risk of Second Cancers 14, 32, 43, 44, 45, 103, 104, 105, 158, 160, 161, 162, 163, 164 Scoliosis and Kyphosis Scoliosis and Kyphosis after Treatment for Childhood Cancer 101, 139, 151 Single Kidney Health Keeping Your Single Kidney Healthy 127, 128 45, 46, 111, 164 Skin Health after Childhood Cancer Skin Health Version 4.0 – October 2013 – Index COG LTFU Guidelines Patient Education Materials

3 Health Link – Abbreviated Title Health Link – Full Title Associated Guideline Section(s) Precautions for People Without a Functioning Spleen Splenic Precautions 82, 116, 149 Thyroid Problems Thyroid Problems after Childhood Cancer 60, 71, 72, 73, 74, 152, 154, 155 Spanish Health Links Health Link – Spanish Title Associated Guideline Section(s) Health Link – Abbreviated Title Diet and Physical Activity Manteniéndose Saludable a través de su Dieta y Actividades Físicas 54, 80, 81, 84, 85, 133 Educational Issues Asuntos Educacionales Después del Tratamiento para Cáncer de la Infancia 1, 20, 23, 30, 49, 66, 67, 129 Emotional Issues 1, 2, 3 Asuntos Emocionales Después Del Cáncer Infantil Female Health Issues Asuntos de Salud de la Mujer Despues del Tratamiento para el Cáncer Infantil 13, 62, 95, 96, 124, 141, 142 Finding Healthcare Encontrando y Pagando su Cuidado Medico después del Tratamiento por el 6 Cáncer Infantil Heart Health Manteniendo su Corazón Sano después del Tratamiento para Cáncer Infantil 33, 34, 80, 81 Introduction to Long-Term 1 Introducción al la Transición de Cuidado de Término Largo Después del Tratamiento para el Cáncer de Niños, Adolescentes, o Adultos Jóvenes Follow-Up Reducir el Riesgo de Cánceres Secundarios Reducing Risk of Cancers 14, 32, 43, 44, 45, 103, 104, 105, 158, 160, 161, 162, 163, 164 French Health Links Health Link – French Title Health Link – Abbreviated Title Associated Guideline Section(s) Breast Cancer Le Cancer du Sein Suite au Traitement d’un Cancer Pédiatrique : Êtes-Vous a 77, 157 Risque ? Cataracts Cataractes Suite au Traitement d’un Cancer Pédiatrique 16, 39, 64 Dental Health 10, 68, 69, 80, 81, 113, 162 La Santé Dentaire Suite au Traitement d’un Cancer Pédiatrique Eye Heatlh La Santé des Yeux Suite au Traitement d’un Cancer Pédiatrique 65, 112, 123 Growth Hormone Deficiency Les Problèmes Endocriniens Suite au Cancer Pédiatrique : Déficit en Hormone 55 de Croissance Precocious Puberty Les Problèmes Endocriniens Suite au Cancer Pédiatrique : La Puberté Précoce 56, 57 Splenic Precautions 82, 116, 149 Précautions Pour les Individus Sans Rate Fonctionnelle Version 4.0 – October 2013 – Index COG LTFU Guidelines Patient Education Materials

4 Health Link Healthy living after treatment of childhood cancer Late Effects after Amputation for Childhood Cancer Treatment for a childhood bone or soft tissue tumor of the arms or legs may include an amputation as part of the treatment. Sometimes an amputation is needed because of effects from amputation due to childhood cancer. What are the potential late effects of amputation? Skin blisters, redness, or bruising from a poorly fitting prosthesis • • Phantom limb pain (perception of pain coming from the area where the limb used to be) • Shooting pains, severe cramping, or a burning sensation in the amputated limb Skin breakdown and slow wound healing of the remaining limb • Back or other muscle pain (due to increased use of other muscle groups and limbs to make up for decreased • function in the amputated extremity) Emotional distress related to change in body image • Increased energy or effort to do daily activities • Increased weight gain (due to decreased physical activity) • Development of diabetes (because of weight gain, lack of physical activity and poor food choices) • What are the follow-up recommendations for amputees? Keep the residual limb clean and dry • Check the skin daily for color changes and skin break down • Wash items that are used in the prosthesis (stump shrinker, elastic garments, stump socks) regularly • Have an evaluation of the prosthesis fit every 6 months until you are fully grown, then once a year, and any time • problems arise • Work with a physical and occupational therapist to develop a plan for gait training, activities of daily living, and an exercise plan (including range of motion, strength, agility, and balance) Have a yearly physical examination • Maintain a healthy diet and activity level • What are the signs that your prosthesis needs the attention of a prosthetist? You hear noises of any kind (squeaking, popping, clicking, etc.) • You break any part of the prosthesis • You need new supplies • You have outgrown the prosthesis • You have chronic pain while wearing your prosthesis • What other issues occur after amputation? Dealing with peer pressure and body image change • Coping with “being different” • • Feeling anxious, unsure, or sad • Paying for a new prosthesis | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Amputation | Version 4.0 | 10/13 Page 1 of 2

5 Health Link Healthy living after treatment of childhood cancer Coping with environments that may or may not be accessible • Using public transportation (airplane, train, bus, etc.) • In some cases, living with chronic pain (see related Health Link: Chronic Pain after Childhood Cancer) • Where can I get help? Talk with your healthcare provider regularly to let them know of any difficulties that you may be facing. In addition, the following web sites offer resources for amputees: • www.amputee-coalition.org/first_step/firststepv2_toc.html Provides information about “First Step, A Guide for Adjusting to Limb Loss” published by the Amputee Coalition of America. • www.amputee-coalition.org Provides further resources for education, advocacy and peer support for amputees. The first step program above is part of the ACA. Written by Tori Marchese, PhD, PT, Pennsylvania State Hershey Medical Center, Hershey, PA; Rajaram Nagarajan, MD, MPH, Pedi- atric Hematology/Oncology/BMT, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH; and Tom Baker, CP (certified prosthetist), CFI, Memphis, TN. ® , Melissa M. Hudson MD, and Joan Darling PhD. Reviewed by Revonda Mosher RN, MSN, CPNP, CPON Reference: Lusardi MM, Jorge M, Orthotics & Prosthetics in Rehabilitation (3rd Ed). St. Louis: Saunders (an imprint of Elsevier Inc.), 2013. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this Note: Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Amputation | Version 4.0 | 10/13 Page 2 of 2

6 Health Link Healthy living after treatment of childhood cancer Bladder Health after Childhood Cancer Certain types of cancer and certain cancer treatments can cause damage to the urinary bladder. The information in this Health Link will help you to recognize signs and symptoms of urinary bladder problems that may occur after treatment with chemotherapy or radiation for childhood cancer. What is the urinary bladder? urinary bladder is a hollow organ that stores urine. It is located behind The filter the blood and make urine, which enters the the pubic bone. The kidneys Kidney bladder through two tubes called “ ” Urine leaves the bladder through ureters. another tube, the . In women, the urethra is a short tube that opens urethra Ureter - just in front of the vagina. In men, it is longer, and passes through the pros tate gland and then the penis. Bladder What are the risk factors for bladder problems? Urethra with cyclophosphamide and/or ifosfamide Chemotherapy • • Radiation therapy to the pelvic area What types of bladder problems can occur? • Bleeding into the bladder (hemorrhagic cystitis) • Scarring (fibrosis) of the bladder Bladder cancer • What is hemorrhagic cystitis? Hemorrhagic cystitis is a condition in which bladder irritation results in blood in the urine . What are the symptoms of hemorrhagic cystitis? - The urine color may range from slightly pink to bright red . Some people may feel like they have to urinate urgent , but there is usually no pain. Hemorrhagic cystitis may occur off and on cannot release all the urine , or that they ly for after completion of therapy. months to years How is hemorrhagic cystitis diagnosed? Usually, blood can be seen in the urine . Sometimes, the amount of blood in the urine is so small that it is seen only during a urinalysis (lab test to examine the urine). When there is blood in the urine, a urine culture is usually done to check for infection. What can I do if I have hemorrhagic cystitis? Usually it is helpful to drink extra fluids to flush out the bladder. Avoid tea, coffee, cola beverages, and other fluids containing caffeine since they may worsen the sudden urge to urinate. If you have kidney or heart problems, check with your healthcare provider before drinking extra fluid. When should I call my healthcare provider? Call your healthcare provider any time you see blood in the urine . You should also report any fever, pain with uri - nation, difficulty urinating, or the need to urinate urgently or frequently, because these are common symptoms of a urinary tract infection or other bladder problems. Version 4.0 | 10/13 | | Bladder Health Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Page 1 of 3

7 Health Link Healthy living after treatment of childhood cancer What is bladder fibrosis? Bladder fibrosis is scar tissue in the bladder . This may build up and cause the bladder wall to thicken. When this happens, the pressure inside the bladder increases. This may affect the bladder’s ability to store and empty urine. Over time these changes can lead to damage to the kidneys. What are the symptoms of bladder fibrosis? . Sometimes, blad or blood in the urine , leakage of urine , Problems may include difficulty emptying the bladder - der fibrosis may not cause any symptoms at all. How is bladder fibrosis diagnosed? An ultrasound - cystosco . A urologist may also perform a of the bladder may show thickening of the bladder wall py , a test that allows the doctor to look directly in the bladder through a thin, lighted tube. What can I do if I think I have bladder fibrosis? If you are at risk for bladder fibrosis and have any of the symptoms described above, you should . see a urologist When should I call my healthcare provider? symptoms of bladder fibrosi Call your healthcare provider anytime you have - s, such as difficulty emptying the blad der, leakage of urine, or blood in the urine. What other bladder problems can occur after childhood cancer? or Bladder cancer is a type of tumor that can develop in people who have been treated with cyclophosphamide radiation involving the bladder . This is a rare type of secondary cancer due to treatment. What are the symptoms of bladder cancer? blood in the urine The most common symptom is . If . There may also be a need to urinate urgently or frequently may be or in the bones , in the genital area , pain over the bladder the cancer is advanced at the time of diagnosis, present. How is bladder cancer diagnosed? The diagnosis is usually made by doing a cystoscopy to obtain a biopsy of bladder tissue. Sometimes the diagnosis can be made by finding cancer cells in the urine. What can I do if I think I have bladder cancer? . referral to a urologist If you are concerned about whether your symptoms may represent bladder cancer, ask for a - Written by Patricia Shearer, MD, MS, University of Maryland Medical Center, Baltimore, MD; Michael Ritchey, MD, Pediatric Urolo gy Associates, Phoenix, Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecticut Children’s Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Lucile Packard Children’s Hospital, Stanford University, Palo Alto, California. ® , Melissa M. Hudson MD, and Joan Darling, PhD. Reviewed by Jill Meredith RN, BSN, OCN Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bladder Health | Version 4.0 | 10/13 Page 2 of 3

8 Health Link Healthy living after treatment of childhood cancer series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bladder Health | Version 4.0 | 10/13 Page 3 of 3

9 Health Link Healthy living after treatment of childhood cancer Bleomycin Alert The lungs are very important organs that are responsible for supplying oxygen to the body and ridding it of carbon dioxide. Sometimes, treatments given for childhood cancer can cause lung damage. Because you received bleomycin during treatment for childhood cancer, it is important for you to learn about certain lung problems that can sometimes happen after treatment with bleomycin. We also suggest that you read the “Pulmonary Health” Health Link, which contains more information about your lungs and how to keep them healthy. What are the problems that can happen after treatment with bleomycin? People who received bleomycin during treatment for childhood cancer can sometimes develop lung problems many years after their treatment has been completed. These problems may include: Lung inflammation (interstitial pneumonitis) • • Lung scarring (pulmonary fibrosis) • Breathing problems associated with high levels of oxygen and/or intravenous fluids (acute respiratory distress syndrome) What is interstitial pneumonitis? Interstitial pneumonitis is inflammation of the thin layer of tissue between the air sacs (alveoli) in the lungs. This in- flammation can worsen if a person develops lung infections, such as pneumonia. Interstitial pneumonitis that occurs as a result of therapy with bleomycin sometimes develops after exposure to toxic fumes, tobacco, or high levels of oxygen given over several hours. What is pulmonary fibrosis? Pulmonary fibrosis is the formation of scar tissue in the small air sacs (alveoli) of the lungs. This scarring makes the lungs stiffer and affects the exchange of oxygen and carbon dioxide in the alveoli. Pulmonary fibrosis may worsen over time and can sometimes lead to early heart failure. What is acute respiratory distress syndrome (ARDS)? ARDS is a serious condition that occurs when alveoli in the lungs are damaged and can no longer provide oxygen to the body. People who received bleomycin in the past may be at risk for developing ARDS, usually as a result of a combination of high levels of oxygen and large amounts of intravenous fluid given during surgery. However, the risk of developing ARDS is very low. If you need a medical procedure requiring oxygen or general anesthesia, be sure to tell your surgeon, anesthesiologist, and other healthcare providers that you have received bleomycin in the past for treatment of childhood cancer. What are factors that increase the risk of developing lung problems after treatment with bleomycin? 2 or more in all doses combined) High total doses of bleomycin (400 units/m • Radiation to the chest or lungs, or total body irradiation (TBI) • • Treatment with other chemotherapy drugs that can also damage the lungs (see related Health Link: “Pulmonary Health”) Exposure to high oxygen levels (such as during general anesthesia or SCUBA diving) • • Smoking Inhaling drugs, such as smoking marijuana (“pot”) • | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bleomycin Alert | Version 4.0 | 10/13 Page 1 of 3

10 Health Link Healthy living after treatment of childhood cancer What monitoring is recommended for people who have received bleomycin for treatment of childhood cancer? A yearly medical check-up is recommended. • Pulmonary function tests may show lung problems that are not apparent during a check-up. For this reason, • it is helpful to have these tests done at least once (at least 2 years after completing cancer treatment) to find out if there are any problems. Your healthcare provider can decide if further testing is needed based on these results. In some cases, your healthcare provider may recommend repeating the pulmonary function tests if you are • scheduled for surgery that requires general anesthesia to check for changes in the lungs that could increase the risk of breathing problems during or after anesthesia. Are there any special precautions I should take? If you received therapy with bleomycin, you should: • Avoid SCUBA diving, unless you have had a complete check-up and have been advised by a pulmonologist (lung specialist) that diving is safe. During SCUBA diving, increased underwater pressures and high oxygen levels can damage the lungs. Tell your surgeon, anesthesiologist, and other healthcare providers about your medical history before any • scheduled procedures that may require oxygen. Avoid breathing high concentrations of oxygen whenever possible, especially for long periods of time (such as • over several hours). If you require oxygen, monitoring of your oxygen levels can usually be done so that you can receive the lowest oxygen concentration that is necessary. • Get the pneumococcal (pneumonia) vaccine. • Get yearly influenza (flu) vaccines. Don’t smoke or use inhaled drugs such as marijuana (“pot”). If you currently smoke, talk to your healthcare • provider about a program to help you quit. Written by Margery Schaffer, RN, MSN, CPNP, Department of Hematology/Oncology, The Children’s Medical Center, Dayton, Ohio. ® Reviewed by Emmett J. Broxson, Jr. MD; Edward Walz, MD; Karen Stormer, RN, CNS, CPON ; Melissa M. Hudson, MD; Debra Friedman, MD; Neyssa Marina, MD; and Smita Bhatia, MD, MPH. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bleomycin Alert | Version 4.0 | 10/13 Page 2 of 3

11 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bleomycin Alert | Version 4.0 | 10/13 Page 3 of 3

12 Health Link Healthy living after treatment of childhood cancer Keeping Your Bones Healthy after Childhood Cancer During childhood and into young adulthood, bone formation usually occurs faster than bone loss, causing bones to grow and become heavier (more dense). As a person gets older, the process of bone removal gradually overtakes bone formation, and bones slowly lose strength as part of the normal aging process. However, loss of bone strength may occur at earlier ages in childhood cancer survivors because of certain cancer treatments. Loss of bone strength may result in a condition known as osteoporosis, which is sometimes referred to as “low bone mineral density.” Osteoporosis: A Silent Disease Osteoporosis is a disorder resulting from too little new bone formation or too much bone loss, causing bones to - become weak. Most people do not have symptoms, especially in the early stages. However, as bones become weak er, the risk for fractures increases. Osteoporosis may occur in any bone, but most commonly affects the wrists, hips, spine, and leg bones. How is osteoporosis diagnosed? Although osteoporosis may be suspected based on a patient’s symptoms and risk factors, the diagnosis is made by measuring bone density with special x-ray techniques, called DEXA or bone density scans. These scans do not expose patients to large amounts of radiation, and generally take less than 20 minutes to perform. People who have osteoporosis should discuss treatment options with their healthcare provider. Medications, such as bisphosphonates and calcitonin, are available specifically for the treatment of low bone density. In addition, if you have low levels of male or female hormones, or low levels of growth hormone, you may also benefit from hormone replacement therapy. What are the risk factors for osteoporosis? Osteoporosis is more common in people with the following characteristics: Female (especially after menopause) • Family history of osteoporosis • Caucasian or Asian race • • Small, thin frame • Older age The following factors may also increase the risk of osteoporosis: Smoking • Diet low in calcium • Lack of weight-bearing exercise • Too much caffeine, alcohol, or soda • A diet high in salt • Additional causes of osteoporosis in people who have had cancer may include: A history of treatment with: • Corticosteroids (such as prednisone and dexamethasone) | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bone Health | Version 4.0 | 10/13 Page 1 of 4

13 Health Link Healthy living after treatment of childhood cancer Methotrexate • Radiation to weight-bearing bones (legs, hips, spine) • Conditions resulting from cancer treatment, including: • Low levels of female or male hormones • Growth hormone deficiency High levels of thyroid hormone • Chronic graft-versus-host disease requiring prolonged therapy with corticosteroids • • Prolonged periods of inactivity (bed rest) Other medical treatments, including: • Certain anticonvulsants (phenytoin and barbiturates) ® ® Aluminum-containing antacids (such as Maalox • ) or Amphogel • Medications such as Lupron (used for treatment of early puberty and endometriosis) High doses of heparin (used to prevent blood clots), especially with prolonged use • Cholestyramine (used to control blood cholesterol) • Many of the medications on this list are essential treatments for certain medical conditions. If you are taking any of these medications, do not change your dosage or stop taking your medication without consulting with your healthcare provider. What lowers the risk of osteoporosis? Fortunately, there are many things you can do to reduce the risk of osteoporosis. Regular weight-bearing exercise (such as brisk walking, dancing, jazzercise and jogging) helps to develop and maintain healthy bones. Bicycling and swimming are excellent exercises for general fitness, but these are NOT weight-bearing exercises, and they do not help to build strong bones. Exercises that are especially good for bone health include higher-impact weight-bearing activities, such as hopping, jogging and jumping rope. Resistance exercises, such as light weight lifting, also help to build strong bones and are especially important for bones of the upper body, including the arms and shoulders. If you have problems with your heart, or have painful bones or joints, be sure to discuss your individual health status and cancer treatment history with your healthcare provider before starting any new exercise program. A diet high in calcium also is important in preventing osteoporosis. Most healthcare professionals recommend 1000– 1500 mg a day, which means a diet rich in dairy products (milk, cheese, yogurt) and leafy green vegetables. Talking with a dietitian may help you design a healthy diet. Over-the-counter calcium supplements also may be useful. See Tables 1 and 2 for recommendations for calcium intake. Additional information about calcium-rich diets is available at www.nationaldairycouncil.org . Vitamin D is needed in order to absorb calcium. Skin makes this vitamin naturally when exposed to sunlight. Many dairy products also contain vitamin D. In general, at least 400 units of Vitamin D is recommended daily. You should not take more than 800 units of Vitamin D per day unless your health care provider has recommended a higher dose for you. Taking too much vitamin D may be harmful, so it’s important to check with your healthcare provider before taking any vitamin D supplements. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bone Health | Version 4.0 | 10/13 Page 2 of 4

14 Health Link Healthy living after treatment of childhood cancer What screening is recommended? After reviewing your treatment history and risk factors, your healthcare provider can advise you regarding the need - for bone density testing. For those at risk, a baseline bone density scan is recommended for childhood cancer sur vivors when they enter long-term follow-up (2 or more years after completion of therapy). Follow-up scans may be needed for ongoing monitoring of bone density in some patients. Table 1: Recommendations for Adequate Dietary Calcium Intake in the United States Age Recommended Calcium Intake 500 mg per day 1–3 years 4–8 years 800 mg per day 9–18 years 1300 mg per day 19–50 years 1000 mg per day 50–70+ years 1200 mg per day (from the Food and Nutritional Board, Institute of Medicine, 1997) Table 2: Common Foods that are Good Sources of Calcium Number of servings to equal Calcium Food Serving Size Content calcium in 1 cup low-fat milk Dairy foods 246 mg 1.0 Whole milk 1 cup (244 g) 1 cup (244 g) Low-fat (1%) milk 1.0 264 mg Nonfat milk 1.2 223 mg 1 cup (245 g) 1.0 258 mg 6 oz (170 g) Yogurt, nonfat, fruit variety 103 mg 2.6 ½ cup (72 g) Frozen yogurt, vanilla, soft serve 202 mg 1 1-oz slice (28 g) 1.3 Cheese Cheese, pasteurized, processed 1 ¾-oz slice (21 g) 144 mg 1.8 0.7 Cheese, ricotta, part skim milk ½ cup (124 g) 337 mg Nondairy foods 3 oz (85 g) 1.3 203 mg Salmon, sockeye canned, drained, with bones Tofu, firm, prepared with calcium ½ cup (126 g) 204 mg 1.3 sulfate and magnesium chloride White beans, cooked, boiled 1 cup (179 g) 161 mg 1.6 62 mg Broccoli, cooked 1 cup, chopped (156 g) 4.3 266 mg 1.0 1 cup, chopped (190 g) Collards, cooked, boiled, drained Baked beans, canned 127 mg 1 cup (253 g) 2.1 1 cup (255 g) Tomatoes, canned, stewed 3.0 87 mg | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Bone Health | Version 4.0 | 10/13 Page 3 of 4

15 Health Link Healthy living after treatment of childhood cancer Table 2 (continued) Calcium Number of servings to equal Serving Size Food calcium in 1 cup low-fat milk Content Foods fortified with calcium 0.9 Calcium-fortified orange juice 1 cup (240 ml) 300 mg Selected fortified breakfast cereals ¾–1 cup (30 g) 2.6 100 mg ½ cup (117 g) Instant oatmeal, fortified, plain, pre - 65 mg 4.1 pared with water 99 mg 2.7 English muffin, plain, enriched, with 1 muffin (57 g) calcium propionate 200–500 mg 1 cup (240 ml) Calcium-fortified soy milk 0.5–1.3 (from the U.S. Department of Agriculture Research Service, 2005) Written by Julie Blatt, MD, Division of Pediatric Hematology-Oncology, University of North Carolina, Chapel Hill, NC; and Lillian R. Meacham, MD, Division of Pediatric Endocrinology, Emory University, Children’s Healthcare of Atlanta, Atlanta, GA Reviewed by Charles Sklar, MD; Melissa M. Hudson, MD; Debra L. Friedman, MD; Joan Darling, PhD, Wendy Landier, RN, PhD, ® ® ; and Sarah Bottomley MN, RN, CPNP, CPON CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: No liability is assumed by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. Version 4.0 Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. | Page 4 of 4 10/13 | | Bone Health

16 Health Link Healthy living after treatment of childhood cancer Breast Cancer Following Treatment for Childhood Cancer: Are You at Risk? You have successfully been treated for cancer during childhood or adolescence and are now moving forward with your life—so the last thing you want to be reminded about is the risk of developing another cancer during adulthood. For a variety of reasons, the risk of cancer increases for everyone as they age. Depending on the specific treatment - you received for childhood cancer, you may be at increased risk for developing breast cancer. It is important to under stand that risk, so that you can take steps to protect your health. What are the risk factors? women treated with radiation to the chest for cancer during childhood, ad- Several studies have shown that have an increased risk of developing breast cancer as they get older, compared olescence, or young adulthood to women their same age in the general population. The risk of secondary breast cancer is related to the dose of radiation . People treated with higher doses of radiation have the highest risk. Researchers are studying this problem to better understand the risk factors and find ways to prevent secondary breast cancer. for developing breast cancer that apply to all women, not just those who have known risk factors There are other received radiation to the chest. These additional risk factors include: Early menstruation (before the age of 12) • Late menopause (after age 55) • • Never having a baby or having a first baby after the age of 30 Having a close relative with breast cancer • Being overweight • • Having an inactive (sedentary) lifestyle (not getting regular exercise) Other possible risk factors associated with developing breast cancer include: High fat diet • Drinking too much alcohol • Never breastfeeding • Smoking • • Birth control pills • Hormone replacement therapy taken for long periods of time When is breast cancer likely to occur? The risk of secondary breast cancer begins to increase between five and nine years following radiation therapy and continues to rise thereafter. This means that if a woman develops breast cancer following chest radiation for child- hood/adolescent cancer, it usually happens at a much younger age (usually 30 to 40 years old) than in women who develop primary breast cancer (usually age 50 or older). | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Breast Cancer | Version 4.0 | 10/13 Page 1 of 3

17 Health Link Healthy living after treatment of childhood cancer What can I do to protect my health? Most women who received radiation therapy to the chest during childhood, adolescence, or young adulthood will develop breast cancer. However, if you received radiation to the chest, it’s important to understand that the risk NOT IS higher for you than it is for women your age who never received radiation. So, the best way for you to protect your - health is by taking steps to closely monitor your breasts. That way, if a cancer develops, it will be detected in its ear liest stages, when treatment is most effective. It is also important to tell your healthcare provider about your cancer treatment history, including the dose of chest radiation that you received. You should arrange for your healthcare provider to obtain a written summary of your cancer treatment (see related Health Link: “Introduction to Long-Term Follow-Up”). What monitoring is recommended? If you received radiation therapy to the chest at a dose of 20 Gy (2000 cGy/rads) or higher* during childhood, adoles- cence, or young adulthood, you should: 1. Perform monthly breast self-examination. Report any lumps or changes to your healthcare provider right away. Have a clinical breast exam performed by your healthcare provider—at least once a year until you reach age 2. 25—then every 6 months thereafter. Have a yearly mammogram and breast MRI (magnetic resonance imaging test) starting at age 25 or 8 years 3. after you received radiation (whichever comes last). *Note: If you received total body irradiation (TBI), your TBI dose should be added to this total. If your healthcare provider is not familiar with these monitoring recommendations for women who have received chest radiation during childhood, adolescence, or young adulthood, we encourage you to share this Health Link with . www.survivorshipguidelines.org them, and tell them that additional information is also available at What if I had a lower dose of radiation to the chest (or had total body irradiation)? For those treated with lower doses of radiation therapy to the chest (less than 20 Gy or 2000 cGy/rads), or for those who had total body radiation (TBI), there still may be an increased risk, but the risk is lower compared with those who received 20 Gy or more of radiation. If you received chest radiation at a dose below 20 Gy, or if you received TBI, you should ask your healthcare provider if breast cancer screening should be started earlier for you than for people who never had radiation. Is there anything else I can do to minimize the risk? The following lifestyle changes may help reduce the risk of developing breast cancer, and will also help you to stay as healthy as possible: Eat more fruits and vegetables (at least 5 servings a day are recommended). • Exercise at least 30 minutes per day on most days of the week. • • If you are overweight, lose excess weight. • Limit your intake of alcohol to no more than one drink per day. • If you smoke, quit. If you have a baby, try to breastfeed for at least four months. • • If you need hormone replacement therapy or birth control pills, discuss the risks and benefits with your health- care professional. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Breast Cancer | Version 4.0 | 10/13 Page 2 of 3

18 Health Link Healthy living after treatment of childhood cancer Limit your exposure to potentially harmful chemicals and pesticides. Use protective equipment if you are ex- • posed to chemicals in your workplace. If you have questions regarding your risk of developing breast cancer, and how you can best protect your health, be sure to discuss this with your healthcare provider. Written by Melissa Hudson, MD, After Completion of Therapy Clinic, St. Jude Children’s Research Hospital, Memphis, TN; and ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Portions adapted Wendy Landier, RN, PhD, CPNP, CPON Winter 2001, used with permission. CCSS Newsletter from Reviewed by Jacqueline Casillas, MD; Smita Bhatia, MD, MPH; Louis S. Constine, MD; Debra Friedman, MD; and Fran Wiley RN, MN. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Note: Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Breast Cancer | Version 4.0 | 10/13 Page 3 of 3

19 Health Link Healthy living after treatment of childhood cancer Preventing Cardiovascular Complications after Treatment for Childhood Cancer As people get older, the risk for developing cardiovascular problems, such as heart attack and stroke, increases. Additional factors that increase the risk of developing cardiovascular problems include: • Being overweight or obese • Having high blood pressure Having high blood sugar • Having unhealthy cholesterol levels • Smoking • Certain cancer treatments given during childhood, adolescence, or young adulthood may increase the risk of develop - ing these health conditions. It is important for you to be aware of these risks so that you can practice healthy habits that can help prevent cardiovascular problems. What increases the risk for being overweight or obese? Treatment factors: Radiation to the brain or head (especially at doses of 18 Gy or higher) • Surgery to the brain affecting the “mid-brain” area (containing the pituitary gland) • Other known risk factors: Overeating • • Eating a diet that is high in fats and sugars Not having regular physical activity • • Having certain medical conditions, like an underactive thyroid (hypothyroidism), or deficient (too low) levels of growth hormone What increases the risk for high blood pressure? Treatment factors: Treatments that can damage the kidneys may increase the risk for high blood pressure. These include: • – Ifosfamide – Cisplatin Carboplatin – Methotrexate – Radiation involving the kidneys, including the abdomen, flank, and total body (TBI) – – Removal of one kidney (see related Health Link: “Single Kidney Health”) Hematopoietic cell transplant (particularly if complicated by chronic graft-versus-host disease) – | Cardiovascular Risk Factors | Version 4.0 | 10/13 Page 1 of 4 Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide.

20 Health Link Healthy living after treatment of childhood cancer Other known risk factors : Being overweight or obese • Having a family history of high blood pressure • • Not getting regular physical activity Eating a diet that is high in salt • What increases the risk for unhealthy cholesterol levels (including high triglycerides and low HDL)? Treatment factors: • Total body irradiation (TBI) Other known risk factors: • Being overweight or obese Having a family history of unhealthy cholesterol levels • Not getting regular physical activity • • Eating a diet high in saturated fats What increases the risk for high blood sugar/diabetes mellitus? Treatment factors: Abdominal radiation • Total body irradiation (TBI) • • Prolonged treatment with corticosteroids, such as prednisone or dexamethasone Other known risk factors: Being overweight or obese (note that survivors who received TBI may be at increased risk even if they are not • overweight or obese) Having a family history of diabetes • How I can I tell if I am overweight or obese? Have your height and weight measured, and then calculate your Body Mass Index (BMI). Calculators are available on-line at for adults and for children/teens. Enter your height and weight www.cdc.gov/healthyweight/assessing/bmi / into the calculator, and it will determine your BMI (for adults) or BMI percentile (for children/teens). Results can be interpreted as follows: For adults (20 years and older): • Healthy: BMI 18.5–24 – Overweight: BMI 25–29 – Obese: BMI 30 and greater – For children/teens (younger than age 20 years): • Healthy: BMI percentile 5–84 – – Overweight: BMI percentile 85–94 Obese: BMI percentile 95 and greater – | Cardiovascular Risk Factors | Version 4.0 | 10/13 Page 2 of 4 Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide.

21 Health Link Healthy living after treatment of childhood cancer What other testing should be done? Recommended screening depends on your treatment history and current health status, and may include one or more of the following: Blood pressure check (yearly) • • Fasting blood test for cholesterol levels (every two years) Fasting blood test for glucose or Hemoglobin A1c (every two years) • What can I do to lower my risk of cardiovascular complications? Get regular check-ups and follow your health care provider’s recommendations • • Eat a healthy diet (See related Health Link: “Diet and Physical Activity”) • Increase physical activity if you are able (See related Health Link: “Diet and Physical Activity”) • . If you don’t smoke, don’t start • . Ask your health care provider for help. On-line assistance is also available from the If you do smoke, quit . www.smokefree.gov National Institutes of Health at If you are overweight, obese, have high blood pressure, unhealthy cholesterol levels and/or high blood sugar, • see your health care provider regularly. Follow their recommendations for additional testing, if needed, and for ongoing treatment of your health condition. In some cases, medications may be required to treat these conditions. If you are prescribed medications, be • sure to take them regularly and to carefully follow your health care provider’s instructions. Written by Adam Esbenshade, MD, MSCI, Assistant Professor of Pediatrics, Vanderbilt-Ingram Cancer Center, Nashville TN. - Reviewed by Kimberley Dilley MD, MPH; Jill H. Simmons, MD; Lillian R. Meacham, MD; Eric J. Chow, MD, MPH; Saro H. Arme ® nian, DO, MPH; Melissa M. Hudson, MD; and Wendy Landier, RN, PhD, CPNP, CPON . Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young Throughout this Health Links Note: adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: and accompanying Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology | Cardiovascular Risk Factors | Version 4.0 | 10/13 Page 3 of 4 Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide.

22 Health Link Healthy living after treatment of childhood cancer Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. Page 4 of 4 10/13 | Version 4.0 | Cardiovascular Risk Factors | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide.

23 Health Link Healthy living after treatment of childhood cancer Cataracts after Treatment for Childhood Cancer Childhood cancer treatment sometimes requires the use of medications or radiation that can increase the risk of developing cataracts. Because vision can have a significant impact on daily living, it is important for survivors who received these treatments to have their eyes checked regularly. What is a cataract? A cataract is clouding of the normally clear lens of the eye. Cataracts often develop slowly, but as the clouding in- creases, vision can be affected. How does a cataract affect vision? The eyes are remarkable organs, allowing light to be converted into impulses that are transmitted to the brain, where . The cornea bends cornea images are perceived. Light enters the eye through a clear layer of tissue known as the and focuses the light, and sends it through the opening of the eye known as the pupil . The pupil controls how much light enters the eye. Behind the pupil is the lens of the eye, which focuses the light onto the retina, the membrane along the back wall of the eye. The nerve cells in the retina change the light into electrical impulses and send them through the ens becomes cloudy due to a cata- optic nerve to the brain, where the image is perceived. When the l ract , the image delivered to the retina becomes blurry. Lens What are the symptoms of a cataract? Retina Common symptoms of cataracts include: Pupil Painless blurring of vision • • Sensitivity to light and glare Cornea Double vision in one eye • • Poor night vision Conjunctiv a Fading or yellowing of colors • • The need for frequent changes in prescriptions for glasses or e Optic nerv contact lenses What cancer therapies increase the risk of developing cataracts? • Certain medications, including: – Busulfan – , such as prednisone and dexamethasone Corticosteroids to the following areas: Radiation therapy • – Eye and surrounding tissue (orbits) – Head or brain (cranial) – Total body irradiation (TBI) | | Version 4.0 | Cataracts Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 3

24 Health Link Healthy living after treatment of childhood cancer with: The risk for cataracts increases • Higher radiation doses – Frequent exposure to sunlight – – The passage of time (the longer off therapy the survivor is) What monitoring is recommended? Have an eye examination every year during your regular check-up • See an eye specialist (ophthalmologist or optometrist) for a full eye evaluation: • if you had: Every year – TBI • High doses (30 Gy or 3000 cGy/rads or higher) of radiation to the head, brain or eyes • • A tumor involving the eye if you had: Every 3 years – • Lower doses of radiation How are cataracts treated? Not all cataracts need treatment. In many cases, an ophthalmologist may monitor the vision closely over many years, and will recommend treatment if and when it becomes necessary. The only treatment for cataracts is surgical remov- al of the lens and replacement with an artificial lens. Today, cataract surgery is a low-risk procedure that is performed on an outpatient basis and usually is successful in restoring vision. How can I keep my eyes as healthy as possible? • Wear sunglasses with UV protection when in bright sunlight. When participating in sports, be sure to select protective eyewear that is appropriate for the sport. Eyewear • worn for sports should be properly fitted by an eye care professional. Avoid toys with sharp, protruding or projectile parts. • • Never play with fireworks or sparklers of any kind to avoid accidental injury. • Be careful when working with hazardous household chemicals. - • Wear protective eyewear when using a lawnmower, power trimmer, or edger, and when working with danger ous equipment in the workshop. • If you do experience an eye injury, seek medical attention promptly. Written by Teresa Sweeney, RN, MSN, CPNP, After Completion of Therapy Clinic, St. Jude Children’s Research Hospital, Memphis, ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. TN; and Wendy Landier, RN, PhD, CPNP, CPON ® Reviewed by Lisa Bashore, PhD, RN, CPNP, CPON ; and Joan Darling, PhD | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Cataracts | Version 4.0 | 10/13 Page 2 of 3

25 Health Link Healthy living after treatment of childhood cancer Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Cataracts | Version 4.0 | 10/13 Page 3 of 3

26 Health Link Healthy living after treatment of childhood cancer Endocrine Problems after Childhood Cancer: Central Adrenal Insufficiency Some people who were treated for cancer during childhood may develop endocrine (hormone) problems as a result of changes in the function of a complex system of glands known as the endocrine system. What is the endocrine system? Pituitar y gland The endocrine system is a group of glands that Hypothalamus regulates many body functions including growth, puberty, energy level, urine production, and Thyroid - stress response. Glands of the endocrine sys tem include the pituitary, hypothalamus, thyroid, adrenals, pancreas, ovaries (in females), and - testes (in males). The hypothalamus and pitu Pancreas itary are sometimes called the “master glands” because they control many of the other glands in Adrenal glands - the endocrine system. Unfortunately, some treat ments given for childhood cancer can damage Ovaries the endocrine system, resulting in a variety of problems. What are hormones? Testes Hormones are chemical messengers that carry information from the endocrine glands through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hor - mones, adrenal and thyroid hormones) that work together to maintain specific bodily functions. What is central adrenal insufficiency? Central adrenal insufficiency is caused by a deficiency of the pituitary hormone known as Adrenocorticotropic Hor - mone (ACTH). The adrenal glands (located on top of the kidneys) are stimulated by ACTH to produce a hormone known as cortisol. If the pituitary gland doesn’t make enough ACTH, then cortisol will not be made by the adrenal gland. Cortisol is important for health because it helps to keep the blood sugar at a normal level and helps the body deal with physical stress, such as fevers or injuries. What are the risk factors for central adrenal insufficiency? Radiation to the brain, especially in higher doses. • • Surgical removal of the pituitary gland What are the symptoms of central adrenal insufficiency? Under normal circumstances, there may be no symptoms at all, or there may be mild symptoms, such as fatigue, weakness, poor appetite, or dizziness. However, under stressful circumstances, such as fever, infection, surgery, or injury, symptoms may become severe, and may include vomiting, diarrhea, low blood sugar, and dehydration. | | Version 4.0 | Central Adrenal Insufficiency Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 2

27 Health Link Healthy living after treatment of childhood cancer What screening is recommended? - People who had radiation in a dose of 30 Gy (3000 cGy/rads) or higher to the central area of the brain (hypothalam ic-pituitary axis) should have a yearly evaluation by an endocrinologist (hormone specialist). Anyone who is having symptoms suggestive of central adrenal insufficiency should also have an evaluation by an endocrinologist. How is central adrenal insufficiency treated? Central adrenal insufficiency is treated with hydrocortisone, a medication that is given by mouth every day on a regu - lar schedule. In times of increased stress, such as illness or surgery, the dose of hydrocortisone is increased and can be administered by injection if necessary. If you have central adrenal insufficiency, you should wear a medical alert bracelet so that in case of an accident or sudden illness, emergency medical workers will be aware of your special health needs. Written by Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH; ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA and Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Charles Sklar, MD; Smita Bhatia, MD, MPH; Melissa M. Hudson, MD; and Susan Shaw, RN, MS, PNP Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Central Adrenal Insufficiency | Version 4.0 | 10/13 Page 2 of 2

28 Health Link Healthy living after treatment of childhood cancer Chronic Pain after Childhood Cancer Pain is a common experience during cancer treatment, either from the cancer itself or from the treatment. Usually, after the treatment is finished, there is no more pain. For some people, however, pain continues to be a side effect of - either the cancer or its treatment, even when the cancer is in remission and treatment has been completed. For can cer survivors, long-term pain may occur for a variety of reasons, such as damage to bones, joints, or nerves resulting from treatment with radiation, surgery, certain chemotherapy medications, or corticosteroids. What is the difference between acute and chronic pain? is generally the result of illness (such as cancer), injury and/or surgery and is usually confined to a limited Acute pain period of time. Acute pain has a biologic purpose, that is, it tells us that we are hurt or ill, so that we can protect ourselves. Chronic pain lasts after the underlying illness or injury has resolved. Chronic pain is a problem because the longer the pain lasts, the more complicated it might become, particularly in the way it could affect a survivor’s quality of life. Pain is very complex Healthcare providers used to think that the amount of pain a person had was directly related to the extent of physical damage to body tissue. Healthcare providers now know that the pain people feel is affected by many physical, emo - tional, and cognitive factors that are unique to each individual. Recent studies involving new technology to study the brain are confirming that many processes are involved in chronic pain. The experience of pain is the result of a complex interchange of information from many different areas - of the brain. These studies have also helped us to understand that pain can sometimes persist (even when the origi nal injury has healed) due to changes in the way the body sends and receives pain signals. Healthcare providers have learned that different people perceive pain in different ways. These differences can be seen in brain imaging studies as individuals rate their pain to the same source of pain, or “stimulus.” That is, some people seem to be very sensitive, whereas others may report little pain even with the same stimulus. While you might be born with some of these differences, environmental factors tend to play an important role too. Factors such as age, sex, developmental level, family and cultural traditions, prior pain experience, and circumstances surrounding the injury all contribute toward how a cancer survivor might interpret, experience, and cope with pain. Pain and Psychological Health Psychological factors play a role in the amount of distress that is experienced, or how upsetting the pain might be to each individual. Furthermore, other factors, such as family or work environment, can also affect the ability to cope with pain. In the case of chronic pain that lasts for months and years, it is possible for cancer survivors to become increas - ingly depressed if they don’t have ways to cope with the pain in a healthy way. Survivors with pain may sometimes become frustrated and angry, especially if pain is preventing them from doing activities that they used to enjoy. If a survivor believes that pain controls his or her life, then they may begin to feel powerless, develop low self-esteem, and avoid taking on challenges and opportunities for growth. Pain can develop into a troublesome cycle. For example, a survivor might stop moving around and doing physical activities because they are afraid of triggering or worsening their pain. However, the less active they are, the weaker their muscles become, which can then worsen the pain. Sometimes, people begin to anticipate the physical sensations of pain in a fearful way. They may withdraw from - social or community activities to avoid having to deal with pain in public situations, and they may increasingly iso | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Chronic Pain | Version 4.0 | 10/13 Page 1 of 3

29 Health Link Healthy living after treatment of childhood cancer late themselves. Depression, anxiety, and chronic stress may follow, which than can make the pain worse. This may also lead to physical changes in the body associated with stress, depression, and anxiety, which can lower the pain thresholds. How is Pain Treated? Fortunately, there are ways to manage and cope with chronic pain. Chronic pain can be treated with medicine, without medicine using behavioral treatments (such as relaxation or meditation), or by a combination of the two. Non-medicine treatments can be used along with medications to manage pain during all phases of cancer treatment. - Studies of patients suffering from chronic pain show that training in pain-coping skills can help increase self-con fidence and reduce distress from pain. Changes in how a person copes with pain and what they believe about their pain may also produce positive changes in behavior, such as increased exercise, improved pacing of activities, better compliance with medication, and increased participation in social activities. Behavioral skills can be helpful in treating and coping with pain. Specific techniques include relaxation, meditation, guided imagery, distraction, and redirected thinking, as well as changing thoughts and beliefs about pain and what it means. Other effective approaches include support groups, massage, music, and counseling focused on pain man - agement and behavioral modification. Additional information about chronic pain is available on the following websites: • www.americanpainsociety.org www.painandhealth.org • Written by Sunita Patel, PhD, Clinical Neuropsychologist and Director, Behavioral Research in Pediatrics, City of Hope National Medical Center, Duarte, CA. ® Reviewed by Scott Hawkins, LMSW; Wendy Landier, RN, PhD, CPNP, CPON ; and Joan Darling, PhD. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this Note: Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Chronic Pain | Version 4.0 | 10/13 Page 2 of 3

30 Health Link Healthy living after treatment of childhood cancer losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. 10/13 Page 3 of 3 | Version 4.0 | Chronic Pain Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. |

31 Health Link Healthy living after treatment of childhood cancer Colorectal Cancer Following Treatment for Childhood Cancer: Are You at Risk? You have successfully been treated for cancer during childhood or adolescence and are now moving forward with your life—so the last thing you want to be reminded about is the risk of developing another cancer during adulthood. For a variety of reasons, the risk of cancer increases for everyone as they age. Depending on the specific treatment you received for childhood cancer, you may be at increased risk for developing colorectal cancer (cancer of the colon or rectum). It is important to understand that risk, so that you can take steps to protect your health. What is colorectal cancer? Colorectal cancer is a type of cancer that occurs in the colon (large intestine) or the rectum (the last several inches of the large intestine). Colorectal cancer is the second leading cause of cancer deaths in the United States. Many of these deaths happen because the cancers are found too late to be cured. If colorectal cancer is found early enough, it can usually be cured. What are the risk factors? Several studies have shown that people who were treated with radiation to the abdomen, pelvis, or spine in moderate - to high doses during childhood, adolescence, or young adulthood have an increased risk of developing colorectal can cer. It is therefore important for you to obtain your radiation treatment records so that you know how much radiation you received. Other known risk factors for developing colorectal cancer include: • Having had colorectal cancer or large intestinal polyps in the past Having a close relative (brother, sister, parent or child) who has had colorectal cancer before age 60 • Having ulcerative colitis or Crohn’s disease • • Having a hereditary colon cancer syndrome (such as familial adenomatous polyposis) What are the signs of colorectal cancer? - Most colorectal cancers begin as a polyp. A polyp starts as a small, harmless growth in the wall of the colon or rec tum. However, as a polyp gets larger, it can develop into a cancer that grows and spreads. During the early stage of colorectal cancer, there are rarely any outward signs or symptoms to alert you or your healthcare provider that cancer is present. This is why screening is so important. Once the cancer has become more advanced, the following signs may be evident. If you have any of these signs, you should see your healthcare provider immediately: Bleeding from your rectum • Blood in your stool or in the toilet after you have a bowel movement • • A change in the shape of your stool Cramping pain in your lower stomach • A feeling of discomfort or an urge to have a bowel movement when there is no need to have one • A change in the normal frequency of your bowel movements • Other conditions can cause these same symptoms. You should be evaluated by your healthcare provider to find out the reason for your symptoms. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Colorectal Cancer | Version 4.0 | 10/13 Page 1 of 3

32 Health Link Healthy living after treatment of childhood cancer When is colorectal cancer likely to occur? In the general population, colorectal cancer is most likely to occur between the ages of 50 and 65. In cancer survivors who were treated with abdominal, pelvic, or spinal radiation, it may occur earlier. The risk begins to increase around 10 years after the radiation. What can I do to protect my health? develop colorectal cancer. not Most people who received radiation therapy to the abdomen, pelvis, or spine will higher for you than it is for is However, if you received this type of radiation, it is important to understand that the risk other people your age who never received radiation. So, the best way for you to protect your health is by taking steps to closely monitor your colon. That way, if a cancer develops, it can be detected in its earliest stages, when treatment is most effective. What monitoring is recommended? If you were treated with radiation therapy to the abdomen, pelvis, or spine at doses of 30 Gy (3000 cGy/rads) or higher* during childhood, adolescence, or young adulthood, you should have a colonoscopy at least every five years, starting at the age of 35, or 10 years after radiation (whichever occurs last). *Note: If you received total body irradiation (TBI), your TBI dose should be added to this total. What is a colonoscopy? Before you have this test, you will be given a medicine to make you feel relaxed and sleepy. A thin, flexible tube connected to a video camera is then inserted into your rectum and slowly guided into your colon. The doctor is able to examine your entire colon, and any polyps or growths can be removed through the tube during the exam. Colonosco - py may be uncomfortable, but it is usually not painful. What if I had a low dose of radiation to these areas (or had total body irradiation)? For those treated with lower doses of radiation therapy to the abdomen, pelvis, or spine (less than 30 Gy or 3000 cGy/rads), or for those who had total body irradiation, there still may be an increased risk, but there are no scientific studies currently available to confirm this. You should have a discussion with your healthcare provider and make a decision about whether or not monitoring with colonoscopy should be started earlier for you than for people who never had radiation. Is there anything else that I can do to minimize the risk? Yes, most definitely! Studies have shown that the following lifestyle changes reduce the risk of colorectal cancer and will help you stay as healthy as possible: Eat a variety of healthful foods, with an emphasis on grains, fruits and vegetables. • Eat five or more servings of a variety of vegetables and fruits each day. – Choose whole grains in preference to processed (refined) grains and sugars. – Limit consumption of red meats, especially processed meats (such as hot dogs or bologna) and those high – in fat. – Choose foods that maintain a healthy weight. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Colorectal Cancer | Version 4.0 | 10/13 Page 2 of 3

33 Health Link Healthy living after treatment of childhood cancer Adopt a physically active lifestyle. • Engage in at least moderate physical activity (such as brisk walking) for 30 minutes or more on five or – more days of the week. Engaging in 45 minutes or more of moderate to vigorous activity (activities such as running, in which you – are not able to carry on a conversation without needing to catch your breath) on five or more days per week may further reduce your risk of colorectal cancer. Written by Kevin Oeffinger MD, Division of Pediatrics, Memorial Sloan-Kettering Cancer Center, New York, New York. ® ; and Joan Darling, PhD. Reviewed by Jacqueline Casillas, MD; Wendy Landier, RN, PhD, CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Colorectal Cancer | Version 4.0 | 10/13 Page 3 of 3

34 Health Link Healthy living after treatment of childhood cancer Cystectomy and Childhood Cancer The information in this Health Link will help you recognize signs and symptoms of urinary bladder problems that may occur after cystectomy. What is a cystectomy? A cystectomy is an operation to remove the urinary bladder. Who needs a cystectomy? Two groups of cancer survivors may have undergone a cystectomy during their childhood cancer treatment. The first group includes those who had a - . Successful treatment of rhabdo cystectomy as part of their cancer treatment myosarcoma of the urinary bladder and prostate, Ewing’s sarcoma, and other sarcomas in the pelvic area sometimes requires cystectomy. The second group includes people who required a cystectomy because of treatment compli - cations , such as hemorrhagic cystitis (bleeding) or bladder fibrosis (scar tissue). How does urine exit the body after a cystectomy? After the urinary bladder is removed, a new passageway is created so that urine can leave the body. Urine is removed from the kidney in a process called “ diversion .” There are three main types of diversions, based on whether urine ”). ”) or is collected in a reservoir (“ flows from the body spontaneously (“i ncontinent diversion continent diversion An “ ” is usually made through a loop of small intestine that is separated from the rest of the incontinent diversion .” The ileal conduit is connected to the outside of the abdomen by urostomy ” or “ ileal conduit bowel and called an “ way of an opening called a “stoma”. Internally, the ureters empty into the conduit, which then serves as a pipeline for urine to flow directly through the stoma. There are two types of “ continent diversions .” The first is the cutaneous continent diversion . This reservoir is made from intestine and is placed within the abdomen in front of the kidneys. The ureters are then connected to this pouch. The appendix or another short piece of small intestine is used to create an extension from this pouch through the abdominal wall to the surface of the skin, often around the belly button. This opening is called a “stoma.” This design prevents urine from flowing back into the kidney (reflux) or spilling out onto the skin. Urine collects in the reservoir, and is removed several times a day by insertion of a catheter (tube) into the stoma. The second type of continent diversion is done by making a new bladder from bowel and is called an “ orthotopic ” The neobladder is connected directly to the urethra. Some people with a neobladder are able to urinate neobladder. naturally, while others may require catheterization to empty the bladder. What problems can occur following cystectomy? leakage of urine around the stoma. This may lead to irri - People who have an ileal conduit or ileal pouch may have tation of the skin and infection at the site of the stoma. Scar tissue (“ strictures ”) may form around the ureters or the conduit and block the flow of urine from the kidneys. Reflux of urine into the kidney may also occur, which increases the risk of a urinary tract infection or kidney stones. Incontinence , or the inability to control passage of urine, may occur after a neobladder is formed. People with this problem may benefit from muscle re-training in order to control urination effectively. If there is persistent leakage of urine, pressure testing of the neobladder and urethra may help decide about treatment. Bladder surgeries involving portions of the small intestine sometimes causes abnormal levels of chemicals and fats in diarrhea the blood. These problems may result in . Vitamin B12 , and/or low levels of kidney stones , | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Cystectomy | Version 4.0 | 10/13 Page 1 of 3

35 Health Link Healthy living after treatment of childhood cancer in both men and women. Surgery and medications sexual dysfunction Cystectomy may also increase the risk of may be used to treat this complication. What can I do if I have a problem following cystectomy? If you have had a cystectomy, you will need life-long . An enterostomal nurse (“ET close follow-up by a urologist nurse”) can help by giving advice about skin care, appliance fitting, and supplies. The nurse can also help “trouble - shoot” if there are problems with catheterization. What monitoring is recommended? If you had an ileal enterocystoplasty (bladder surgery involving a portion of the small intestine), you should have a yearly blood test to check your Vitamin B12 level starting 5 years after your bladder surgery. When should I call my healthcare provider? fever, pain in the midback or side, blood in the urine, or severe Call your healthcare provider whenever you have . If you perform self-catheterization and have irritation of the skin - , this is a difficulty inserting the catheter med ical emergency that needs immediate attention. This complication may mean that the pouch has ruptured, or that the pouch will rupture if the reservoir cannot be drained properly. This can result in serious infection from leakage of urine into the abdomen or pelvis. If you have had a cystectomy, contact your healthcare provider immediately if you have vomiting or abdominal pain. These symptoms may indicate a bowel blockage (obstruction) from scar tissue. - Written by Patricia Shearer, MD, MS, Pediatric Hematology/Oncology, University of Maryland Medical Center, Baltimore, Mary land; Michael Ritchey, MD, Pediatric Urology Associates, Phoenix, Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecticut Children’s Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Hematology/Oncology, Lucile Packard Children’s Hospital, Stanford University, Palo Alto, California. ® Reviewed by Jill Meredith, RN, BSN, OCN ; Melissa M. Hudson, MD; and Joan Darling, PhD. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Cystectomy | Version 4.0 | 10/13 Page 2 of 3

36 Health Link Healthy living after treatment of childhood cancer losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. 10/13 Page 3 of 3 | Version 4.0 | Cystectomy Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. |

37 Health Link Healthy living after treatment of childhood cancer Dental Health Following Childhood Cancer Treatment Treatment for cancer during childhood often increases the risk for dental problems. As a childhood cancer survivor, it is important for you to understand the reasons why dental care is especially important for maintaining your health. What are the risk factors for dental problems after childhood cancer treatment? before your permanent teeth were fully formed, especially if you were younger Treatment with chemotherapy • than 5 years old at the time of your treatment. Radiation that included the mouth and/or salivary glands • Treatment with azathioprine (sometimes given to patients receiving a hematopoietic cell transplant [HCT]) • • Chronic graft-versus-host disease (cGVHD) associated with HCT What dental problems can occur following treatment for cancer in childhood? chemotherapy or HCT during childhood include: Problems that may be a result of • Increased risk for cavities – Shortening or thinning of the roots of the teeth – Absence of teeth or roots – Problems with development of tooth enamel resulting in white or discolored patches on the teeth, grooves – and pits in the teeth, and/or easy staining of the teeth Because teeth develop slowly, these problems are more likely to develop in people who received chemotherapy over a long period of time (several years) during childhood. Problems that may be a result of radiation to the mouth and/or salivary glands include: • – Increased risk for cavities – Shortening or thinning of the roots of the teeth – Absence of teeth or roots Abnormal development of tooth enamel resulting in white or discolored patches on the teeth, grooves and – pits in the teeth, and/or easy staining of the teeth – Small teeth – Early loss of teeth Baby teeth not falling out – – Problems with tooth development or delayed eruption of permanent teeth Increased risk of tooth sensitivity to hot and cold sensation – Xerostomia (dry mouth due to decreased production of saliva) – – Alteration in taste – Trismus (limited ability to fully open the mouth) Temporomandibular joint dysfunction (causing pain in front of the ears) – | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Dental Health | Version 4.0 | 10/13 Page 1 of 5

38 Health Link Healthy living after treatment of childhood cancer – Malocclusion (bite problem, such as overbite or underbite) Abnormal growth of bones of the face and neck – Periodontal (gum) disease – – Osteoradionecrosis (problem with healing of the jawbone after dental surgery or extraction of teeth) (see related Health Link: “Osteoradionecrosis”) What can be done for these problems? - Taking care of teeth and gums is always important, and it is even more important if you have had radiation or che motherapy at a young age. If your gums are not healthy, they can shrink away from your teeth, causing infection in the bone supporting the roots. This bone can dissolve away slowly, causing the teeth to become loose. This condition (inflammation surrounding a tooth). Periodontitis can be prevented by proper brushing of your is called periodontitis teeth and gums and by flossing between your teeth at least once a day. Taking good care of your teeth and gums, combined with routine visits to your dentist, can prevent the development of cavities and gum disease. If your permanent teeth do not develop normally, you may need caps or crowns in order to improve your smile and the function of your teeth. Sometimes reconstructive surgery is needed to correct poor bone growth of the face or ), or cause some scarring and hard trismus jaw. Radiation can sometimes make it difficult to open your mouth fully ( - fibrosis ening of the jaw muscles ( ). Stretching exercises for the jaw may reduce fibrosis and improve your ability to - open your mouth. Your dentist will be able to instruct you or refer you to occupational therapy to learn these exercis es. If you have crooked or small teeth, this may be improved by bonding (applying a thin coating of plastic material on the front surface of the teeth to cover any flaws). If braces are needed, your dentist will do a panorex x-ray of the teeth to see if the teeth, roots and supporting bone are strong enough for braces. If you had high doses of radiation to the face or mouth and you require dental surgery, you may be at increased risk of developing a bone-healing problem ( ) after the surgery. Your dentist should discuss this potential problem with a radiation oncologist osteoradionecrosis before any dental surgery. If you had an allogeneic bone marrow or stem cell transplant (from a donor other than yourself), it is important to let your dentist know, so that the dentist can check for changes indicating chronic graft- versus-host disease. What is xerostomia and what should I do if I have it? Dry mouth, also called “xerostomia” can occur after radiation to the head or neck. Other problems related to xerosto - mia include persistent sore throat, burning sensation in the mouth and gums, problems speaking, difficulty swallow - ing, hoarseness, or dry nasal passages. Dryness of the mouth is a result of decreased saliva and/or thickening of the saliva, and can lead to the development of cavities. Drinking liquids frequently and the use of artificial saliva can help relieve the symptoms of xerostomia. Sugar-free candy stimulates salvia production. Proper brushing habits are very important for people with xerostomia, as is limiting the intake of candy and other sweets. Your dentist may recommend application of a fluoride gel to your teeth at least once a day. The fluoride acts on the enamel of your teeth to make it more resistant to decay. Ask your dentist about whether you should use daily fluoride. Should I take any special precautions when having dental work done? Always let your dentist know if you have the following health conditions: Shunt • (surgical placement of a tube to drain fluid from the brain) Limb salvage procedure • (replacement of bone with a metal rod or bone graft) | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Dental Health | Version 4.0 | 10/13 Page 2 of 5

39 Health Link Healthy living after treatment of childhood cancer • Leaky or scarred heart valve (this sometimes happens after radiation to the chest) (surgical removal of the spleen) Splenectomy • (40 Gy–4000 cGy/rads or more) High doses of radiation to the spleen • (cGVHD) following hematopoietic cell transplant Currently active chronic graft-versus-host disease • In any of these situations, bacteria that normally enter the bloodstream during dental work may increase the risk of serious infections. As a precaution against infection, if you have any of these conditions, antibiotics may be needed before any dental work is done. When dental work is planned, ask your dentist if you need to take antibiotics before the procedure. (Also see the fol - lowing related Health Links: “Splenic Precautions,” “Limb Salvage after Bone Cancer,” and “Heart Problems Following Treatment for Childhood Cancer ”). What is the risk of developing oral cancer? People who have had radiation to the head and neck during childhood, or who have cGVHD after bone marrow or stem cell transplant, may be at increased risk for oral cancers. Using tobacco in any form or using alcohol in combi - nation with smoking greatly increases this risk. Infection with certain forms of the human papillomavirus (HPV) also increases this risk. Your dentist should perform an oral cancer screening exam during each visit. If you notice any of the following, notify your dentist immediately: or that bleeds easily A sore that does not heal • • r of your mouth tissues A change in the colo in the mouth • A lump, thickening or rough spot s anywhere in the mouth or on the lips Pain, tenderness or numbnes • Most of the time, these symptoms do not indicate any problem, but a dentist can tell if they are the sign of a serious problem. What should I do to keep my teeth and mouth as healthy as possible? Follow these recommendations (unless your dentist recommends otherwise): • . Make sure that your dentist knows your health history See your dentist regularly at least every six months and the treatment you received. (Ask your oncologist for a summary of your treatment). Be sure that your visit includes an oral cancer screening, and be sure to notify your dentist if you notice any warning signs of oral cancer. Have a panorex x-ray done before dental/orthodontic procedures to evaluate the root development of your • teeth and determine if any modifications need to be made to your dental treatment plan. • Brush your teeth at least twice a day . Use a fluoride-containing toothpaste to help prevent tooth decay. – – Place your brush at a slight angle toward the gum when brushing along the gum line. Use a soft-bristle toothbrush, as recommended by your dentist. – – Clean all surfaces of the teeth. – Brush your tongue to remove bacteria that can cause bad breath. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Dental Health | Version 4.0 | 10/13 Page 3 of 5

40 Health Link Healthy living after treatment of childhood cancer • Floss your teeth once or twice a day Floss carefully between teeth because brushing alone does not remove plaque between teeth. – Use a gentle touch to avoid injury to gums. – – It is normal to have a small amount of bleeding when flossing, but if the bleeding increases or your gums are red and puffy, this may be a sign of infection and you should notify your dentist. • Use antibacterial, alcohol-free fluoride mouth rinses (your dentist can recommend the best ones for you). Drink liquids frequently and/or use artificial saliva • (available at most pharmacies without a prescription). Apply fluoride frequently • . Your dentist may recommend a daily fluoride rinse or gel that you can use at home after brushing, in addition to the special fluoride application you may receive at your regular dental cleanings. • Limit sweets and carbohydrate-rich foods. (check with your healthcare provider to • Do not use tobacco products and use alcohol only in moderation see if you should drink alcohol at all, since alcohol may increase other problems following childhood cancer treatment). Notify your dentist immediately if you develop any signs of infection in your mouth or gums, such as red - • ness, tenderness, excessive bleeding of gums, painful teeth, and/or increased areas of sensitivity. about dental health issues following childhood cancer treatment: For more information www.mouthhealthy.org American Dental Association’s dental health website at • ® Adapted by Debbie Lafond, DNP, RNCS, PNP, CPON , Children’s National Medical Center, Washington, D.C., from “Save Your - Smile” by Melissa Hudson, MD, St Jude Children’s Research Hospital, After Completion of Therapy (ACT) Clinic, used with per mission. ® Reviewed by Man Wai Ng, DDS; Revonda Mosher, MS, CPNP, CPON , Joan Darling, PhD; Louis S. Constine, MD; Smita Bhatia, ® . MD, MPH; and Lisa Bashore, PhD, RN, CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: and accompanying Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: No liability is assumed - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Dental Health | Version 4.0 | 10/13 Page 4 of 5

41 Health Link Healthy living after treatment of childhood cancer fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | 10/13 | Version 4.0 | Dental Health Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Page 5 of 5

42 Health Link Healthy living after treatment of childhood cancer Staying Healthy through Diet and Physical Activity Good nutrition and regular exercise offer many benefits to childhood cancer survivors. These include: Promoting healing of tissues and organs damaged by cancer and its treatment • Building strength and endurance • Reducing the risk of certain types of adult cancers and other diseases • Decreasing stress and providing a feeling of well-being • Impact of Childhood Cancer on Nutrition and Physical Activity The effects of childhood cancer on nutrition and physical activity will be different for each survivor. Cancer affects nutrition in a number of ways. Some survivors may have difficulty gaining weight, while others may have problems with gaining too much weight. Physical activity is an important factor in maintaining a healthy body weight. There are many factors that can influence a survivor’s ability to be physically active; however, childhood cancer and its treat - ment should not be used as an excuse for not eating a healthy diet or staying physically active. Many survivors, just like many people who have never experienced cancer, have poor health habits. Now is a good time to begin making healthy choices about diet and exercise. These choices can have a positive effect on your health for many years to come. Developing a Healthy Nutrition Plan Suggestions for a healthy diet include: • Choose a variety of foods from all the food groups. Use the interactive - customized guide at www.choosemyplate.gov to help develop a well-bal anced diet and activity plan. Eat five or more servings a day of fruits and vegetables, including citrus • fruits and dark-green and deep-yellow vegetables. • When drinking juice, choose 100% fruit or vegetable juice, and limit to about 4 ounces per day. Eat plenty of high-fiber foods, such as whole grain breads, rice, pasta and • cereals. Limit refined carbohydrates, including pastries, sweetened cereals, soft • drinks and sugars. Decrease the amount of fat in your meals by baking, broiling or boiling foods. • Limit intake of red meat and substitute fish, poultry, or beans. When you eat meat, select leaner and smaller • portions. Limit fried and high-fat foods, such as french fries, snack chips, cheeseburgers, and pizza. • Choose low-fat milk and dairy products. • • Avoid salt-cured, smoked, charbroiled, and pickled foods. • Adults should limit alcoholic drinks to less than two a day for men and one for women. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Diet and Physical Activity | Version 4.0 | 10/13 Page 1 of 4

43 Health Link Healthy living after treatment of childhood cancer , consult with your health care team and a nutritionist to develop a nutrition plan. Herbal If you need to lose weight or dietary supplements should be discussed to determine if they are truly healthy. There are several questions you should ask yourself to make sure your nutrition plan will be effective. Do you have a realistic, achievable weight goal? • • Does your plan include foods that you will enjoy eating for the rest of your life, not just a few weeks or months? • Does your plan include a variety of foods? Are foods on your plan easily available at your supermarket? • Does your plan fit into your lifestyle, daily schedule and budget? • Does your plan include lifestyle changes that will help you maintain your weight loss? • Developing a Healthy Exercise Plan - Check with your healthcare team before starting an exercise plan or taking part in new sports and recreational ac tivities. Your healthcare provider can make you aware of the activities that you can safely take part in and those you should avoid. When choosing an exercise plan, ask yourself these questions: Do you have reasonable goals based on your present strength and endurance? • Is the activity safe for you to perform? • Does the plan fit into your lifestyle and schedule? • Does the activity require special equipment or protective gear and will your budget cover the expense? • Do you need to make changes in the sport or activity based on a special need? • • Do you enjoy doing the sport or activity? Here are a few helpful suggestions when implementing your exercise plan: Start out slow. Don’t try activities that are too strenuous or put you at risk for muscle strain. • Begin your exercise plan with a warm-up program and end with a cool-down activity, such as stretching and • slow easy movements. Use correct posture when exercising. • Exercise until you are tired, but not in pain. • • Identify the muscles you want to strengthen and choose exercises that work on those muscles. • Alternate exercises to work different muscles and different parts of your body. To avoid injury, use the right equipment and shoes. • Avoid running, jogging, or aerobic dancing on hard surfaces such as asphalt or concrete. • Increase your workout by no more than 10 percent per week. • The American Cancer Society recommends having a physically active lifestyle. Adults should engage in at least moderate physical activity (brisk walking, bicycling, vacuuming, gardening) for at least 30 minutes per day on 5 or more days of the week: 45 to 60 minutes is preferable. If you don’t have the time for an activity session all at once, break it up into three shorter sessions of 10 to 15 minutes each. Children and adolescents should engage in at least 60 minutes per day of moderate to vigorous physical activity (running, aerobics, heavy yard work) at least 5 days per week. Here are some practical suggestions to try to work physical activity into your daily schedule. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Diet and Physical Activity | Version 4.0 | 10/13 Page 2 of 4

44 Health Link Healthy living after treatment of childhood cancer • Park a good distance from your place of work and walk the extra distance each day. Set aside 30 minutes a day to take a brisk walk. • Take the stairs instead of the elevator. • If you have a sit-down job, get up and stretch your muscles every hour and take a walk during your lunch or • break. Ride a bike to work or for running errands. • If you have a dog, take him/her on a brisk walk every day . • • Plant a garden, wash your car, mow the lawn, paint furniture, clean out the garage and catch up on all those chores you have been meaning to do—instead of watching TV or playing on the computer. Watch TV or read the newspaper while on a stationary bike or treadmill. • Plan active family outings, instead of attending a movie. • • Exercise with a friend you enjoy spending time with. Join a sports team. • Physical Activity for Survivors with Special Needs Survivors who have special needs can take part in most activities, but the help of a physical or occupational therapist may be needed to adapt the activity for success. A social worker may be able to help find insurance coverage or other resources for special equipment. Specialized programs for individuals with special needs, organizations and other www.ncpad.org resources are often available through your healthcare center, in your local community, and at . Adapted by Sharon Frierdich, RN, MS, CPNP, Pediatric Hematology/Oncology, University of Wisconsin Children’s Hospital, Madi - son, WI, from “Staying Physically Healthy, Play Safely, Play Well,” St. Jude Children’s Research Hospital, used with permission. Reviewed by Kevin Oeffinger, MD; Missy Layfield; Octavio Zavala; and Marcia Leonard, RN, PNP Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Throughout this Note: Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Diet and Physical Activity | Version 4.0 | 10/13 Page 3 of 4

45 Health Link Healthy living after treatment of childhood cancer and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. Page 4 of 4 10/13 | Version 4.0 | Diet and Physical Activity Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. |

46 Health Link Healthy living after treatment of childhood cancer Educational Issues Following Treatment for Childhood Cancer Treatment for cancer during childhood or adolescence may affect educational progress due to prolonged absences or - reduced energy levels that frequently occur during treatment. In addition, some types of cancer may require thera py to control or prevent spread of the disease to the brain and/or spinal cord (central nervous system). This therapy can sometimes affect memory and learning abilities. Parents and teachers should be aware of potential educational problems that may be related to cancer treatment so that children and teens at risk can be watched closely and given extra help if the need arises. What increases the risk of educational problems? Factors that may place children and teens at increased risk for difficulties in school include: • Diagnosis of cancer at a very young age • Numerous or prolonged school absences A history of learning problems before being diagnosed with cancer • Cancer treatment that results in reduced energy levels • Cancer treatment that affects hearing or vision • Cancer treatment that results in physical disabilities • Cancer therapy that includes treatment to the central nervous system (see below). • Are children and teens with certain types of cancer at higher risk of developing educational difficulties? Yes, children and teens with the types of cancer listed below are more likely to have received treatments that may affect learning and memory. Since treatments for these types of cancer vary widely, not everyone who was treated for these cancers is at increased risk. • Brain tumors Tumors involving the eye or ear • • Acute lymphoblastic leukemia (ALL) Non-Hodgkin’s lymphoma (NHL) • What types of treatment place children and teens at higher risk for learning and memory problems? • - Methotrexate—if given in high doses intravenously (IV) or injected into the spinal fluid [intrathecal (IT) or intrao mmaya(IO)] Cytarabine—if given in high doses intravenously (IV) • Surgery involving the brain • Radiation to any of the following areas: • Brain (cranial) – – Ear/infratemporal region (midfacial area behind the cheekbones) – Total body irradiation (TBI) – Cisplatin or carboplatin (may affect hearing) | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Educational Issues | Version 4.0 | 10/13 Page 1 of 4

47 Health Link Healthy living after treatment of childhood cancer What testing is recommended? Any young person who has had any of the above cancer treatments, or who is having difficulties in school, should undergo a specialized evaluation by a pediatric psychologist (neuropsychological testing) at the time of entry into long-term follow-up. This type of testing will measure IQ and school based skills, along with more detailed informa - tion about how the child processes and organizes information. - Even if the initial neuropsychological evaluation is normal, it is important for parents and teachers to remain watch ful. Further neuropsychological evaluations may be necessary if the child or teen begins having trouble in school or develops any of the problems listed in the section below. In addition, repeat testing is often recommended at times when academic challenges are more likely to occur, such as at entry into elementary school, middle school, high school, and during pre-college planning. What learning problems may occur? The brain is a very complex structure that continues to grow and develop throughout childhood and adolescence. Some problems may not become apparent until years after therapy is completed. Common problem areas include: • Handwriting Spelling • Reading • Vocabulary • • Math Concentration • Attention span • Ability to complete tasks on time • Memory • • Processing (ability to complete assignments that require multiple steps) Planning • • Organization • Problem-solving Social skills • What can be done to help with learning problems? - If a problem is identified, special accommodations or services can be requested to help maximize the student’s learn ing potential. The first step is usually to schedule a meeting with the school in order to develop a specialized educa - tional plan. Examples of strategies that are often helpful for children and teens with educational problems related to cancer treatment include: • Seating near the front of the classroom Minimizing the amount of written work required • Use of tape-recorded textbooks and lectures • • Use of a computer keyboard instead of handwriting Use of a calculator for math • | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Educational Issues | Version 4.0 | 10/13 Page 2 of 4

48 Health Link Healthy living after treatment of childhood cancer Modification of test requirements (extra time, oral instead of written exams) • • Assignment of a classroom aide Extra help with math, spelling, reading, and organizational skills • Access to an elevator • • Extra time for transition between classes • Duplicate set of textbooks to keep at home What laws protect the rights of students who have undergone treatment for cancer? In the United States, there are three public laws that protect the rights of students with educational problems related to cancer treatment. These laws are: The Rehabilitation Act of 1973 – Section 504 This legislation provides accommodations for students with a “physical or mental impairment which substantially limits one or more major life activities,” or students who have “a record of such impairment,” or who are “perceived as having such an impairment” (The Rehabilitation Act, 1973). Qualifying conditions include chronic illnesses such as cancer, as well as many other disabilities, including hearing problems, vision problems, learning disabilities, speech - disorders, and orthopedic handicaps. All childhood cancer survivors in the United States are eligible for accommo dations under this law, and all educational institutions receiving federal funding (including colleges and universities) are required to comply. Accommodations may include modifications in the curriculum (such as allowing the use of a calculator and extra time for assignments or test-taking) and the environment (such as seating near the front of the classroom or allowing extra time between classes). The Individuals with Disabilities Education Act (IDEA) The IDEA legislation (PL 105-17) requires that public schools provide “free and appropriate education in the least restrictive environment” for disabled students between the ages of 3 and 21 years of age. In order to qualify for special education services under IDEA, the student must meet qualifications under at least one disability outlined in the law—those that most commonly apply to students treated for cancer include “specific learning disability,” “traumatic brain injury,” or “other health impairment.” In order to access services under the IDEA legislation, parents must initiate the process by requesting that the student be evaluated for an “Individualized Education Plan” or IEP. The student will then undergo an assessment process to determine what assistance is required. A conference is then held to discuss the results of the evaluation and, if the student qualifies, to determine an individualized plan to meet - the identified specialized educational needs. Services available under the IDEA legislation include tutoring, special ized classroom placements (such as a resource room), psychological services, adaptive physical education, physical, occupational and speech/language therapy, and transportation services. All services and accommodations required by the student should be specified in the IEP (the written document describing the special education program). The IEP should be reviewed and updated on an annual basis to assure that it continues to meet the student’s educational needs. The Americans with Disabilities Act (ADA) - The ADA law (PL 101-336) protects against discrimination in employment, transportation, communication, govern ment and public accommodations for people with disabilities. It guarantees equal access to public spaces, event, and opportunities and may be particularly helpful for students seeking higher education or employment. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Educational Issues | Version 4.0 | 10/13 Page 3 of 4

49 Health Link Healthy living after treatment of childhood cancer Where can I get more information? Additional information is available from the Center for Parent Information and Resources ( www.parentcenterhub. ). org - American Childhood Cancer Organization, for the free publication: Educating the Child with Cancer, a Guide for Par .) www.acco.org ents and Teachers (phone: 1-855-858-2226, ext. 101; website: ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Written by Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Debra L. Friedman, MD; Melissa M. Hudson, MD; Julie Blatt, MD; Joan Darling, PhD; and Scott Hawkins, LMSW. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Educational Issues | Version 4.0 | 10/13 Page 4 of 4

50 Health Link Healthy living after treatment of childhood cancer Emotional Issues after Childhood Cancer The Cancer Experience Diagnosis and Treatment Diagnosis and treatment are difficult times for children with cancer and their families. During diagnosis, children have tests and procedures that are new, painful and often scary. For parents, it is the anxiety of waiting for the results of these tests and procedures that can be the worst part of this time. Learning the diagnosis can be a relief, especially - when effective treatments are available. These treatments, though, can be unpleasant for children to have and upset ting for families to watch or give. Tests and procedures are repeated during treatment to find out if the treatment is helping or should be changed. Children with cancer and their parents are frequently at the hospital, sometimes away from other family, friends, home, work or school for long periods of time. Parents worry about whether or not their child’s cancer will be cured, how to minimize their child’s suffering, and how to make the most of life. Brothers and sisters also worry about, and are sometimes jealous of, the child with cancer. Childhood cancer survivors and their siblings can be concerned about their parents, and keep worries and feelings to themselves to try to protect their parents. As a result, children with cancer, their parents and their siblings can feel angry, lonely, sad and afraid during treatment. Periods of anxiety and depression can occur. After Treatment Ends For survivors and their families, the end of treatment can bring new feelings as they come to know the good (and sometimes not so good) outcomes of successful treatment. During treatment, people tend to be concerned with getting through the day-to-day. It is after treatment that people can begin to think about and come to terms with their experience. People can have a range of feelings after treatment ends, and the blend of feelings can be as unique as each person. Survivors and their families often fear that the original cancer will return. Regular testing for recurrent cancer or late effects, and even just talking about possible late effects can cause stressful feelings. The diagnosis of a late effect related to cancer treatment or a new health problem unrelated to childhood cancer can also be sources of distress. Anniversaries of cancer events, such as the date of diagnosis or end of treatment, and life changes such as - school entry or the normalization of peer relationships can bring on feelings that include relief and happiness, sad ness about the loss of a regular childhood, and guilt over having survived when others did not. Some survivors may feel vulnerable because of their cancer experience, and can be concerned about their health and act with caution. Parents of childhood cancer survivors very much want to protect all of their children from harm. These protective feelings can increase usual tensions between parents and teenagers over issues related to growing independence, especially in matters that can affect health. Other teens who have had cancer believe that, having survived cancer, they can do anything—and this makes them feel invincible. These feelings can lead some survivors to undertake - difficult studies, work or hobbies. The same feelings can lead other survivors to take part in unhealthy or risky behav iors. Some Reactions to the Stresses of Survivorship For the most part, childhood cancer survivors and their family members respond well to the stresses of survivorship. Sometimes though, physical problems or other stresses related to childhood cancer and everyday life can sometimes lead to intensely distressing emotions that need medical attention. Some survivors, and their family members, can - experience periods of high anxiety that may or may not be triggered by reminders of the upsetting aspects of treat ment. They may develop three types of symptoms typically seen in people with posttraumatic stress disorder (PTSD), including (1) unwanted recall of unpleasant memories of cancer, (2) physical or emotional overreactions, and (3) going out of the way to avoid reminders of cancer. For the most part, childhood cancer survivors and their family members | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Emotional Issues | Version 4.0 | 10/13 Page 1 of 4

51 Health Link Healthy living after treatment of childhood cancer do not develop all three types of symptoms and PTSD. Yet one or two of these symptoms can nonetheless get in the way of relationships, school, work and other key areas of daily life in survivorship. Personal growth can be another reaction to the stresses of survivorship. After years of living with childhood cancer, some survivors and their family members may find that they have undergone meaningful and beneficial changes in themselves, their relationships with other people, and their values as a result of their experiences. It does not mean that these survivors would choose to have had cancer, but that they have been able to find some positive changes in their lives as a result of surviving that stressful experience. Experiencing these positive changes is sometimes referred to as posttraumatic growth. Risk Factors Several factors can affect the development of depression and anxiety with symptoms of posttraumatic stress after diagnosis and treatment of childhood cancer, including: Female gender • • Adolescent or young adult age Prior trauma • Mental health or learning problems before childhood cancer • Low levels of social support • • Parental history of depression, anxiety, or PTSD • Cancer of the brain or spine (central nervous system [CNS]) Cancer treatment to the CNS (radiation to head, chemotherapy into spinal fluid) • • Treatment with Hematopoietic Cell Transplant (bone marrow or stem cell transplant) When to Seek Help People with distress that (1) lasts two weeks or more, and/or (2) interferes with their ability to do key home, school or work tasks, should call their healthcare provider to discuss the need for a referral to a mental health professional. Because physical health problems can cause these same symptoms, a thorough check-up by your primary healthcare professional is recommended if they occur. Some possible signs that help is needed can include: Changes in appetite and weight • • Crying easily or being unable to cry • Constant tiredness and low energy level Sleeping a lot • Not sleeping well • Feeling hopeless; thoughts of death, escape, suicide • Increased irritability • Decreased interest in activities that had been pleasurable in the past • Unwanted recall of painful aspects of cancer • • Feeling extremely fearful, upset or angry when thinking about cancer Physical reactions (rapid heart rate, shortness of breath, nausea) when thinking about cancer • | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Emotional Issues | Version 4.0 | 10/13 Page 2 of 4

52 Health Link Healthy living after treatment of childhood cancer • Avoiding health care visits • Refusing to talk about cancer Share Your Concerns with Your Healthcare Provider If you experience distress, discuss it with your primary health care provider or childhood cancer specialist. Your distress may be related to your cancer experience, worries about late effects, or other events in your life. In any case, there is treatment. Talking with others about your fears and worries is a first step in gaining control over them. In - addition to receiving help from a health care provider, some people also find support through support groups, partici pation in activities at their place of worship, or their sense of spirituality. Support can help survivors and their families manage difficulties in useful ways. Treatment Options Treatments for depression, anxiety and posttraumatic stress symptoms include counseling in group or individual sessions and medication. Medication usually works in combination with some form of counseling. Mental health professionals (including mental health nurse practitioners, psychiatrists, psychologists, and social workers) provide treatment for depression and anxiety in a variety of community settings. Your primary healthcare provider can help you find a suitable mental health professional in your community. Resources Support is available to childhood cancer survivors and their families who have anxiety and depression after treatment. These are just a few of the many resources available: ) www.cancer.or American Cancer Society ( g This site provides web-based support network, other programs and services, and stories of hope for cancer survivors and their families. www.healthyminds.or American Psychiatric Association ( ) g This site provides guidelines for choosing a psychiatrist. The Anxiety and Depression Association of America ( www.adaa.or g ) This site provides information that can help people with anxiety disorders and depression find treatment and develop self-help skills. American Childhood Cancer Organization ( ) g www.acco.or This site offers education, support, service, and advocacy for childhood cancer survivors, their families and the pro - fessionals who care for them. Children’s Oncology Group ( www.childrensoncologygroup.or g ) This site provides parents and families with information related to specific cancer type, treatment stage and age group as well as tips on navigating the health care system, getting and giving support, and maintaining a healthy lifestyle. www.nimh.nih.go v ) National Institute of Mental Health ( - This site provides general information about anxiety or depression, available treatments, finding a mental health pro vider, and access to research reports and other relevant information. See these specific areas of the web site: http://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml http://www.nimh.nih.gov/health/topics/depression/index.shtml | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Emotional Issues | Version 4.0 | 10/13 Page 3 of 4

53 Health Link Healthy living after treatment of childhood cancer http://childhoodcancerguides.org/sresource.html Patient Centered Guides This site provides a list of follow-up clinics for childhood cancer survivors and articles related to psychosocial aspects of survivorship. Revised by Sheila Judge Santacroce, PhD, APRN, CPNP, University of North Carolina at Chapel Hill, Chapel Hill, NC. Originally adapted by Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, from “Dealing with Emotions after Childhood Illness” by Melissa Hudson, MD, After Completion of therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN. Reviewed by Joe Don Cavender, MSN, RN, CPNP; Daniel Armstrong, PhD; Joan Darling, PhD; Catherine L. Woodman, MD, Scott Hawkins, LMSW; and Octavio Zavala. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Note: Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Emotional Issues | Version 4.0 | 10/13 Page 4 of 4

54 Health Link Healthy living after treatment of childhood cancer Keeping Your Eyes Healthy after Treatment for Childhood Cancer High doses of radiation to the brain, eye, or eye socket (orbit) during treatment for childhood cancer can have a long-lasting effect on the eyes. Radioiodine treatment and chronic graft-versus-host disease (an immune response - that can develop after bone marrow or stem cell transplant) can also affect the eyes. Because vision can have a sig nificant impact on daily living, it is important for survivors who received these treatments to have their eyes checked regularly. How do the eyes work? Lacrimal The eyes are remarkable organs, allowing light to be converted into impulses that gland are transmitted to the brain, where images are perceived. The eyes are located in Orbit orbit or eye socket. A thin layer of tissue called the area of the skull known as the Lacrimal covers and protects the eye and eyelids. Tears are produced in the conjunctiva duct the lacrimal gland , located in the outer corner of the eye socket, above the eye - ball. Tears flow over the eye, providing lubrication, and drain into a tiny canal at Lens lacrimal duct the inner corner of the eye, called the . Light enters the eye through Retina a clear layer of tissue known as the cornea . The cornea bends and focuses the Pupil light, and sends it through the opening of the eye known as the pupil. The pupil Cornea controls how much light enters the eye. Behind the pupil is the lens of the eye, which focuses the light onto the retina, the membrane along the back wall of the eye. The nerve cells in the retina change the light into electrical impulses and Conjunctiv a optic nerve send them through the to the brain, where the image is perceived. Optic nerv e What eye problems can develop following treatment for childhood cancer? : Clouding of the lens of the eye. When this happens, light cannot pass through the lens easily. Common Cataracts symptoms of cataracts include painless blurring of vision, sensitivity to light and glare, double vision in one eye, poor night vision, fading or yellowing of colors, and the need for frequent changes in glasses or contact lens prescriptions (see related Health Link: Cataracts). Xerophthalmia : Dry eyes resulting from decreased tear production due to radiation or chronic graft-versus-host disease. Symptoms include pain at the surface of the eye and light sensitivity. : Shrinking of the lacrimal duct, which drains tears from the eye. Lacrimal duct atrophy can Lacrimal duct atrophy result in problems with increased tearing. This can be caused by radiation to the eye or orbit, or by radioiodine (I-131) therapy given for treatment of thyroid cancer. Other eye problems: The following eye problems are less common and are usually seen only in survivors who had higher-dose radiation treatments directed at the eye or orbit: : Underdevelopment of the eye and surrounding tissues, caused by radiation to the eye or orbit. Orbital hypoplasia This can result in a small eye and orbit (orbital hypoplasia). : Sunken eyeball within the orbit as a result of radiation. Enophthalmos | Version 4.0 Page 1 of 5 10/13 | Eye Health Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. |

55 Health Link Healthy living after treatment of childhood cancer Keratitis : Inflammation of the cornea (the clear, outer surface of the eye). This can cause pain at the surface of the eye and light sensitivity. : Enlargement of blood vessels in the white part of the eye. These do not usually cause any symp- Telangiectasias toms, but are sometimes bothersome because of their appearance. : Damage to the retina (the back surface of the eye where visual information is passed from the eye to Retinopathy the brain). Painless vision loss is the major symptom of retinopathy. Maculopathy : Damage to the macula (area of central vision within the retina), which may result in blurred vision. : Damage to the nerves that send visual information from the eye to the brain. This can Optic chiasm neuropathy result in vision loss. Papillopathy : Swelling of the optic disc (area where the optic nerve enters the eye). : Increased pressure within the eye. This can damage the optic nerve and result in vision loss. Glaucoma What cancer therapies increase the risk of developing these eye complications? Radiation therapy at doses of 30 Gy (3000 cGy/rads) or higher to the following areas increases the risk of treat- • ment-related eye problems: – Eye Orbits – – Brain (cranial) Other factors that may increase the risk for developing certain eye problems include: • Radioiodine (I-131) treatment for thyroid cancer (increased risk for lacrimal duct atrophy) – – Chronic graft-versus-host disease following bone marrow, cord blood, or stem cell transplant (increased risk for xerophthalmia) Diabetes mellitus (increased risk for problems involving the retina and optic nerve) – High blood pressure (increased risk of optic chiasm neuropathy) – Frequent exposure to sunlight (increased risk for cataracts) – Certain chemotherapy drugs, such as, actinomycin-D and doxorubicin, which can increase the risk of eye – problems when given together with radiation. What monitoring is recommended? Evaluation by an ophthalmologist at least once a year is recommended for any one who: • Had a tumor involving the eye – Had radiation to the brain, eye, or orbit at doses of 30 Gy (3000 cGy) or higher – Has graft-versus-host disease (as a result of bone marrow, cord blood, or stem cell transplant) – Note : An ophthalmologist is a medical doctor (MD or DO) who specializes in eye problems—this is different from a doctor of optometry (OD), who is also a vision specialist but not a medical doctor. Examination by an | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Eye Health | Version 4.0 | 10/13 Page 2 of 5

56 Health Link Healthy living after treatment of childhood cancer ophthalmologist should include vision screening, examination for cataracts, and a full examination of the inter - - nal structures of the eye. People who develop vision problems should be followed regularly by an ophthalmolo gist. • - Evaluation by an ocularist (a trained person who makes and fits artificial eyes) at least once a year is recom mended for anyone who has had: An eye removed because of cancer treatment and/or complications related to treatment – An artificial eye (prosthesis) that does not fit well – Evaluation by an ophthalmologist is recommended on an as-needed basis for people who had Radioiodine • (I-131) treatment, if they develop excessive tearing. , seek prompt medical evaluation. In some cases, referral to an If you develop any of the following symptoms ophthalmologist may be needed: – Blurry vision Double vision – – Blind spots Sensitivity to light – – Poor night vision Persistent irritation of surface of eye or eyelids – Excessive tearing/watering of eyes – Pain within the eye – – Dry eyes How are eye problems treated? Cataracts: Not all cataracts need treatment. In many cases, an ophthalmologist may monitor the vision closely over many years, and will recommend treatment if and when it becomes necessary. The only treatment for cataracts is surgical removal of the lens and replacement with an artificial lens. Today, cataract surgery is a low-risk procedure that is performed on an outpatient basis and works well in restoring vision. Orbital hypoplasia : Usually no treatment is needed for orbital hypoplasia. In severe cases, rebuilding of the bones around the eye may be possible. Enophthalmos : Plastic surgery can be done to build up the orbit. y: A surgical procedure to widen the tear drainage system can be performed if heavy tearing is Lacrimal duct atroph a significant problem. Xerophthalmia : Treatment of dry eye includes the frequent use of artificial tears (eye drops) or ointments to moisten the surface of the eye. In severe cases, the tear drainage system can be blocked by surgery to reduce the drainage of tears from the eye. - : The frequent use of artificial tears (eye drops) or ointments to moisten the surface of the eye is recom Keratitis mended. Patching the affected eye during sleep may also promote healing. Keratitis caused by infection is treated with antibiotic eye drops or ointment. Rarely, surgical replacement (transplant) of the cornea is necessary. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Eye Health | Version 4.0 | 10/13 Page 3 of 5

57 Health Link Healthy living after treatment of childhood cancer : No treatment is necessary. Telangiectasias : Retinopathy may require laser or photocoagulation (heat) treatment of the retina. Retinopathy and maculopathy Rarely, surgery to remove the eye is necessary in severe cases. : No treatment available. Optic chiasm neuropathy What can be done if there is impaired vision? - If impaired vision is detected, it is important to follow the recommendations of your ophthalmologist regarding treat ment. If vision is not correctable, services are available in most communities to assist people with visual impairments. In addition, in the United States, services are available for people under 22 years of age through the local public school district or referral agencies (available under the Individuals with Disabilities Education Act, PL 105-17). Some - times special accommodations, such as seating in the front of the classroom are all that is needed, but this usually requires that the parent request an Individualized Education Plan (IEP) for the child through the school district (see related Health Link: “Educational Issues Following Treatment for Childhood Cancer”). The Americans with Disabilities Act (ADA, PL 101-336) guarantees people with visual impairment equal access to public events, spaces, and opportunities. How can I protect my vision? It’s important to protect your eyes whether or not you have treatment-related eye disorders. Precautions you can take include: • Wear sunglasses with UV protection when in bright sunlight. When participating in sports, be sure to select protective eyewear that is appropriate for the sport. Eyewear • worn for sports should be properly fitted by an eye care professional. • Avoid toys with sharp, protruding, or projectile parts. Never play with fireworks or sparklers of any kind to avoid accidental injury. • Be careful when working with hazardous household chemicals. • - Wear protective eyewear when using a lawnmower, power trimmer, or edger, and when working with danger • ous equipment in the workshop. If you do experience an eye injury, seek medical attention promptly. • Revised by Teresa Sweeney, RN, MSN, CPNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN. ® ; and Lise Reviewed by Julie Blatt, MD; Debra Friedman, MD; Melissa M. Hudson, MD; Revonda Mosher, RN, MSN, CPNP, CPON Yasui. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Eye Health | Version 4.0 | 10/13 Page 4 of 5

58 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Eye Health | Version 4.0 | 10/13 Page 5 of 5

59 Health Link Healthy living after treatment of childhood cancer Female Health Issues after Treatment for Childhood Cancer The effects of childhood cancer therapy on female reproductive function depend on many factors, including the girl’s age at the time of cancer therapy, the specific type and location of the cancer, and the treatment that was given. It is important to understand how the ovaries and female reproductive organs function and how they may be affected by therapy given to treat cancer during childhood. The female reproductive system At birth, the ovaries contain all the eggs they will ever have. When the time comes to begin puberty, the pituitary gland in the brain signals the ovaries by releasing two hormones (FSH and LH). The ovaries secrete the female Ovaries hormones estrogen and progesterone, which are necessary for reproductive function Normally, during a monthly menstrual cycle, one egg matures and is released from the ovaries. If the egg is not fertilized, menstruation begins. Uterus The cycle then repeats itself about every 28 days. With each menstrual cycle, the supply of eggs decreases. When most of the eggs are depleted from a woman’s ovaries, menopause begins. During menopause, the menstrual cycles stop, the ovaries stop making hormones, and the woman is no longer able to become pregnant. How does cancer therapy affect the ovaries? Certain chemotherapy drugs, radiation therapy, and surgery can sometimes damage the ovaries, reducing the reserve supply of eggs. When the ovaries are not able to produce eggs or hormones, this is called ovarian failure. What are the causes of ovarian failure? Chemotherapy of the “alkylator” type (such as cyclophosphamide, nitrogen mustard and busulfan) is most likely to affect ovarian function. The total dose of alkylators used during cancer treatment is important in determining the likelihood of ovarian damage. With higher total doses, the likelihood of damage to the ovaries increases. If treatment for childhood cancer included a combination of both radiation and alkylating chemotherapy, the risk of ovarian failure may also be increased. Radiation therapy can affect ovarian function in two ways: Primary (direct) failure of the ovaries can be caused by radiation that is aimed directly at or near the ovaries. The age of the person at the time of radiation and the total radiation dose can affect whether or not ovarian failure occurs. Generally, younger girls tend to have less damage to the ovaries than people who received equal doses but who were teenagers or young adults at the time of radiation. However, higher doses usually cause the ovaries to stop functioning in most females regardless of age. Secondary (indirect) failure of the ovaries can occur as a result of radiation therapy to the brain. The pituitary gland, located in the center of the brain, regulates the production of two hormones (FSH and LH) needed for proper ovarian function. Radiation to the brain at higher doses can damage the pituitary gland, leading to low levels of these hor - mones. | | Female Health Issues Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. | Version 4.0 10/13 Page 1 of 4

60 Health Link Healthy living after treatment of childhood cancer Surgery . If both ovaries were removed (bilateral oophorectomy) during cancer therapy, this always results in ovarian failure. This type of ovarian failure is sometimes called “surgical menopause.” If one ovary was removed (unilateral oophorectomy), menopause may occur earlier than it otherwise would have (“premature menopause”). What types of cancer therapy increase the risk of ovarian failure? Females who received the following therapy may be at risk for ovarian failure: • to any of the following areas: Radiation therapy – Whole abdomen – Pelvis Lower spine (lumbar and sacral areas) – – Total body (TBI) Head/brain (cranial)—if dose was 30 Gy (3000 cGy/rads) or higher – • —the class of drugs called “alkylators” can cause ovarian failure when given in high doses. Chemotherapy Examples of these drugs are: Alkylating agents : Busulfan – Carmustine (BCNU) – – Chlorambucil ® – Cyclophosphamide (Cytoxan ) – Ifosfamide – Lomustine (CCNU) – Mechlorethamine (nitrogen mustard) – Melphalan – Procarbazine Thiotepa – : Heavy metals – Carboplatin Cisplatin – : Non-classical alkylators Dacarbazine (DTIC) – Temozolomide – Surgery • : Removal of one or both ovaries – | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Female Health Issues | Version 4.0 | 10/13 Page 2 of 4

61 Health Link Healthy living after treatment of childhood cancer What are the effects of childhood cancer therapy on the female reproductive system? Failure to enter puberty 1. . Pre-pubertal girls who received cancer therapy that results in ovarian failure will need hormonal therapy (hormones prescribed by a doctor) to progress through puberty. If this occurs, referral to an endocrinologist (hormone doctor) should be made for further evaluation and management. . Many females who were already menstruating will stop having Temporary cessation of menstrual cycles 2. - monthly periods during their cancer therapy. In most cases, menstrual cycles will resume sometime after can cer treatment ends, although the timing of this is unpredictable. In some cases, it may take up to several years to restart menstruation. Since eggs are released before the menstrual cycles, pregnancy can occur before the menstrual periods resume. If pregnancy is undesired, birth control (contraception) should be used, even if the menstrual cycles have not resumed. 3. . Menopause (the permanent cessation Permanent cessation of menstrual cycles (premature menopause) of menstrual cycles) occurs at an average age of 51. Females who were already menstruating prior to their cancer therapy sometimes develop ovarian failure as a result of their cancer treatment and never resume menstrual cycles. Others may resume menstrual cycles, but then stop menstruating much earlier than would normally be expected. If a woman is currently having menstrual periods but received chemotherapy or radiation that can affect ovarian function or had one ovary removed, she may still be at risk for entering menopause at If a woman at risk for premature menopause desires to have children, it is best not to delay an early age. childbearing beyond the early thirties, because the period of fertility may be shortened after having . cancer therapy . Females with ovarian failure do not make enough estrogen. Estrogen is needed for Lack of female hormones 4. functions other than reproduction—it is very important for maintaining strong healthy bones, a healthy heart, and overall well-being. Young women with ovarian failure should see an endocrinologist (hormone specialist) for hormone replacement therapy, which will be necessary until they reach middle age. 5. . Infertility is the inability to achieve a pregnancy after at least one year of unprotected intercourse. In Infertility - women, infertility occurs when the ovaries cannot produce eggs (ovarian failure), or when the reproductive or gans are unable to sustain a pregnancy. Infertility may be the result of surgery, radiation therapy, chemotherapy, . There may also be other reasons for infertility that are unrelated to cancer therapy or any combination of these. If a woman has regular monthly menstrual periods and normal hormone levels (FSH, LH and estradiol), she is likely to be fertile and able to have a baby. If a woman does NOT have monthly menstrual periods, or if she has monthly menstrual periods ONLY with the use of supplemental hormones, or if she had to take hormones in order to enter or progress through puberty, she is likely to be infertile. Girls who had surgical removal of both ovaries will be infertile. Girls who had surgical removal of the uterus (hysterectomy) but still have functioning ovaries can become mothers with the use of a gestational surrogate (another female who carries the pregnancy to term). Women who are infertile should discuss their options with - a fertility specialist and their oncologist. The use of donor eggs may be an alternative for some women. Addi tional options may include adoption of a biologically unrelated child or child-free living. . Certain therapies used during treatment for childhood cancer can sometimes increase the 6. Pregnancy risks risk of problems that a woman may experience during pregnancy, labor, and childbirth. The following women may be at increased risk: – Women who had radiation to the whole abdomen, pelvis, lower spine, or total body (TBI) may have an increased risk of miscarriage, premature delivery, or problems during labor. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Female Health Issues | Version 4.0 | 10/13 Page 3 of 4

62 Health Link Healthy living after treatment of childhood cancer – Women who received anthracycline chemotherapy (such as doxorubicin or daunorubicin), and women who received radiation to the upper abdomen or chest may be at risk for heart problems that can worsen with pregnancy and labor (see related Health Link: “Heart Health”). Women with these risk factors should be followed closely by an obstetrician who is qualified to care for women with high-risk pregnancies. Fortunately, in most cases, there is no increased risk of cancer or birth defects in children born to childhood cancer survivors. In rare cases, if the type of cancer in childhood was a genetic (inherited) type, then there may be a risk of passing that type of cancer on to a child. You should check with your oncologist if you are not sure whether the type of cancer you had was genetic. What monitoring is recommended? Females who have had any of the cancer treatments that may affect ovarian function should have a yearly check-up that includes careful evaluation of progression through puberty, menstrual and pregnancy history, and sexual func - tion. Blood may be tested for hormone levels (FSH, LH, and estradiol). If any problems are detected, a referral to an endocrinologist (hormone specialist) and/or other specialists may be recommended. For women with ovarian failure, a bone density test (special type of x-ray) to check for thinning of the bones (osteoporosis) may also be recommended. Written by: Marcia Leonard, RN, PNP, Long Term Follow Up Clinic, Department of Pediatric Hematology-Oncology, University of Michigan Medical Center, Ann Arbor, MI. Reviewed by Charles Sklar, MD, Julie Blatt, MD; Daniel Green, MD; Melissa M. Hudson, MD; Wendy Landier, RN, PhD, CPNP, ® ; Smita Bhatia, MD, MPH; and Peggy Kulm RN, MA. CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health and accompanying Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Female Health Issues | Version 4.0 | 10/13 Page 4 of 4

63 Health Link Healthy living after treatment of childhood cancer Finding and Paying for Healthcare after Treatment for Childhood Cancer As a childhood cancer survivor, it is important for you to have regular medical check-ups, since some of the treat- ments that you received may increase your risk for health problems as you get older. Sometimes it is difficult to find and pay for the medical care that you need. There are several things you can do to make sure you are getting the best possible care for your needs. Here are some suggestions. . Many childhood cancer programs have long-term follow-up clinics. A If possible, find a long-term follow-up clinic directory of long-term follow-up clinics affiliated with Children’s Oncology Group institutions can be found at this link: . If you are http://applications.childrensoncologygroup.org/Surveys/lateEffects/lateEffects.PublicSearch.asp still followed in a childhood cancer center, or if there is a childhood cancer center near where you live, contact that center to discuss your options for obtaining long-term follow-up care. Long-term follow-up clinics usually screen for late effects and educate survivors about ways to lower the risk of health problems after cancer. They are generally an excellent place to get a complete health evaluation, but are not usually designed to meet the everyday healthcare needs of survivors. Also, some long-term follow-up programs are only able to follow survivors until they reach adult- hood, which may mean that they can see survivors only until they reach age 18 or 21. So, even if you are attending a long-term follow-up clinic, it is also important to find a primary healthcare provider who can take care of your general medical needs. Choose a primary healthcare provider in your community . The best primary healthcare providers for adults are usually those who specialize in family practice or internal medicine. The chance of finding a primary healthcare pro- vider who has experience taking care of childhood cancer survivors is low, due to the rarity of serious illnesses like cancer in children. However, it is important to look for a healthcare provider who is thorough, well-trained, and a good listener. Ask friends and family members to help you identify healthcare providers with these qualities who are prac - ticing in your area. Make an appointment for a general check-up and discuss your past medical history and health risks during this visit. It is best to do this at a time when you are well, and not when you are being seen because of an illness. Tell your healthcare provider about the Childhood Cancer Survivor Long-Term Follow-Up Guidelines , avail- www.survivorshipguidelines.org . This comprehensive set of able on the Children’s Oncology Group website at healthcare screening and management guidelines is designed for use by healthcare professionals who are providing ongoing medical follow-up for childhood cancer survivors. Organize a medical team to provide your local care . Get advice from your childhood cancer doctor and your primary healthcare provider about who should be on your medical team. Your team should always include a primary healthcare provider and a dentist. Depending on your situation, you may also need to include other professionals that are important for your continued health, such as a physical therapist or psychologist. Your primary healthcare provider can help you select these individuals and provide referrals for their services. . Ask your hospital or clinic to send Share your medical records with all the members of your medical team copies of your treatment records to all of your new healthcare providers. If possible, ask the doctor who treated your childhood cancer to provide you with a summary of your diagnosis and treatment, future health risks, and recommended screening. Keep a copy of the summary and important sections of your pediatric medical records in a personal medical file. Be sure that every new healthcare provider you see is aware of your medical history and any special health risks you may have because of your cancer treatment. If you need help in obtaining your medical . call the hospital, clinic, or medical center where you received your treatment records, | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Finding and Paying for Healthcare | Version 4.0 | 10/13 Page 1 of 4

64 Health Link Healthy living after treatment of childhood cancer . To find out if you are getting adequate care, ask yourself the fol- Be a partner in the healthcare that you receive lowing questions: • Do I know my cancer diagnosis and specific treatment I received? • Do I know about the health problems that can occur after this treatment? • Have I shared this information with my healthcare providers? Does my healthcare provider check periodically for health problems specifically related to my childhood • cancer? Does my healthcare provider advise me about things I should or should not do to keep healthy after my treat- • ment for childhood cancer? Explore all resources for paying for healthcare . Healthcare is expensive and people who have had a serious illness often face many hurdles when trying to obtain adequate follow-up care. In the United States, insurance companies are now required to provide coverage for childhood cancer survivors, regardless of pre-existing medical conditions. The law also now provides the option of coverage under a parent’s health insurance policy for young adults under age 26. More information about your rights and protections under the health care law (commonly known as the https://www.healthcare.gov/how-does-the-health-care-law-pro- “Affordable Care Act”), is available at this link: tect-me/ . If you aren’t insured, you should seek assistance a local social service organization or your hospital social worker to identify your coverage options. As a survivor of childhood cancer, you have already overcome many obstacles. The process of obtaining and paying for healthcare can sometimes seem discouraging, but it is worth the effort!! Survivorship Healthcare Coverage Checklist Define your current healthcare needs. Ask yourself: • Do I mainly need a healthcare provider for general check-ups? • Do I have chronic health problems that require frequent medical visits? Do I have problems that need periodic monitoring by specialists? • Am I on expensive prescription medications? • • Do I require prosthetic or rehab services? Explore all resources for healthcare coverage: • Coverage through a parent’s or spouse’s policy Health insurance coverage offered by your college or employer • State or federal public assistance programs that may substantially lower the cost of coverage • Discounted or free healthcare through health department clinics or church-based programs • • Low cost or free prescription programs provided by some pharmaceutical companies for people with low incomes If you are insured, get the facts about your policy. What services are covered? • • Does your plan offer a discounted prescription program? • Are referrals to specialists controlled through a primary care physician? | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Finding and Paying for Healthcare | Version 4.0 | 10/13 Page 2 of 4

65 Health Link Healthy living after treatment of childhood cancer Are limitations set on pre-existing medical conditions? • Is coverage in effect only while the patient is a full-time student? • Does coverage expire at certain age? • Ask for help in understanding current resources and locating new ones. Ask family members, friends, hospital or clinic insurance managers and insurance representatives to explain • unclear details about insurance benefits. • Call a clinic or hospital social worker to ask for help in finding state or community healthcare resources. Check out services offered by national nonprofit organizations (example, Lions Club for ocular prostheses). • Be proactive in obtaining and maintaining health insurance coverage. • • to determine your options for insurance coverage and to determine whether you qualify Visit healthcare.gov for discounted or free coverage available to people with low income or disability. • Avoid lapses in coverage. Plan for transitions in health insurance coverage that occur with college graduation, aging out of parental coverage, or job changes. Be aware of the laws that help you keep insurance benefits. The following laws apply to survivors living in the United States: (Affordable Care Act), the comprehensive health care reform law enacted in the United States on March ACA • 30, 2010, created a Health Insurance Marketplace and new rights and protections that make health insurance coverage fairer and easier to understand. More information is available at www.healthcare.gov . • COBRA (Consolidated Omnibus Budget Reconciliation Act) requires employers or larger businesses to make insurance available for a limited time to employees (and their dependents) who are fired or laid off. (Health Insurance Portability and Accountability Act of 1996) allows people with pre-existing conditions HIPAA • to keep comprehensive insurance coverage when they are changing insurance plans or jobs. Under the new Health Care Law in the United States, HIPAA eligibility provides greater protections than are otherwise available under state law. Be persistent when meeting obstacles. Try not to get overwhelmed. • Complete and follow through with applications. Appeal denials with letters of support from your healthcare provider. • • Contact groups such as Candlelighters and the National Coalition of Cancer Survivors for more information about healthcare resources. • Don’t give up! Recommended Resources National Coalition of Cancer Survivors is a patient-led advocacy organization for cancer survivors. Their The booklet, “A Cancer Survivor’s Almanac,” lists hundreds of organizations and agencies that offer help regarding spe- cific cancer-related issues, including finding affordable healthcare. The booklet is available on their website, www. canceradvocacy.org . Their phone number is (877) 622-7937. Cancer Care , a nonprofit organization dedicated to providing emotional support, information, and practical help to people with cancer and their loved ones. They also offer assistance in helping people with a cancer history under - stand the provisions of the Affordable Care Act. 1-800-813- HOPE (4673). . www.cancercare.org | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Finding and Paying for Healthcare | Version 4.0 | 10/13 Page 3 of 4

66 Health Link Healthy living after treatment of childhood cancer Written by: Melissa M. Hudson, MD, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN; Sally Wiard, MSW, LCSW, Christus Santa Rosa Hospital, San Antonio, TX; and Allison Hester, RN, MSN, CPNP, Arkansas Chil- dren’s Hospital, Little Rock, AR. Adapted from the CCSS Newsletter, Spring 2003, used with permission. Reviewed by Leslie L. Robison, PhD; Kevin Oeffinger, MD; Peggy Kulm, RN, MA; Scott Hawkins, LMSW; and Octavio Zavala. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Finding and Paying for Healthcare | Version 4.0 | 10/13 Page 4 of 4

67 Gastrointestinal Health Health Link Healthy living after treatment of childhood cancer Gastrointestinal Health after Treatment for Childhood Cancer Treatment for childhood cancer can sometimes cause scarring and chronic problems of the intestines (bowel) or other parts of the gastrointestinal (GI) system. It is important to know about the GI system so that you can recognize symptoms and keep your GI system healthy. How does the gastrointestinal system work? The GI system (also known as “the digestive system”) is a group of organs that break down (digest) the food that we eat.. This allows the body to use food to build and nourish cells and provide energy. What types of GI problems can arise after treatment? The types of problems can vary depending on the treatment that was given. Generally, GI problems occurring after treatment for childhood cancer are related to surgery or radiation. The effects depend on the location of the surgery, the radiation treatment field, and the dose of radiation received. Problems that can develop include: (blockage of the Bowel obstruction • Eshopagus intestines)—the risk is higher for people Liver who have had a combination of abdominal Gallbladder radiation and surgery. • (scarring and nar - Esophageal stricture Large intestine (colon) rowing of the tube that delivers food from the mouth to the stomach)—this is usually Intestines Small intestine a result of radiation and can cause prob- lems with swallowing. (solid deposits of cholesterol or Gallstones • calcium salts that form in the gallbladder or Rectum bile ducts)—the risk is increased in people who had abdominal radiation. • Hepatic fibrosis or cirrhosis (scarring of the liver)—the risk is increased for people who received radiation to the abdomen, or for those with a chronic liver infection (hepatitis). • Chronic enterocolitis (inflammation of the intestines resulting in chronic diarrhea and abdominal pain)—the risk is increased after abdominal or pelvic radiation. • Colorectal cancer (cancer of the large intestine)—the risk is increased for people who had abdominal or pelvic radiation (see related Health Link “Colorectal Cancer”). What treatments increase the risk for developing a gastrointestinal problem? Surgery • involving the abdomen or pelvis Radiation at doses of 30 Gy (3000 cGy/rads) or higher to the: • – Neck Chest – | 10/13 | Version 4.0 | Gastrointestinal Health Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Page 1 of 4

68 Health Link Healthy living after treatment of childhood cancer Abdomen – Pelvis – : Other risk factors include • – History of bowel adhesions (scarring) – History of bowel obstruction (blockage) History of chronic graft-versus-host disease (cGVHD) of the intestinal tract – Family history of colorectal or esophageal cancer – Family history of gallstones – Tobacco use – What are the possible symptoms of a gastrointestinal problem? Chronic acid reflux (heartburn) • Difficult or painful swallowing • • Chronic nausea or vomiting • Abdominal pain Chronic diarrhea • Chronic constipation • • Black tarry stools or blood in stool • Weight loss Changes in appetite • Abdominal distension/feeling bloated • Jaundice/yellow eyes, yellow skin (see related Health Link: “Liver Health”) • If you develop any of these symptoms, see your healthcare provider. Symptoms that come on quickly or are severe (such as the sudden onset of abdominal pain and vomiting) may indicate a more urgent problem (such as a bowel obstruction) requiring immediate medical evaluation. What medical tests are used to screen for a gastrointestinal problem? Screening for problems affecting the GI system involves an annual physical examination by a qualified health care professional. X-rays, blood tests, and testing for small amounts of blood in the stool (called the guaiac test) are may be needed if gallstones or gallbladder problems are suspected. Additionally, ultrasound sometimes needed. An colonoscopy certain tests that examine the inside of the colon ( ) with special instruments ) or esophagus ( endoscopy are sometimes needed. What can be done to prevent gastrointestinal problems? Develop a healthy nutrition plan. Suggestions for a healthy diet include: • www.choosemyplate.gov Choose a variety of foods from all the food groups. Visit – for help developing a well-balanced meal plan. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Gastrointestinal Health | Version 4.0 | 10/13 Page 2 of 4

69 Health Link Healthy living after treatment of childhood cancer – Eat 5 or more servings a day of fruits and vegetables, including citrus fruits and dark-green and deep-yel - low vegetables. When drinking juice, choose 100% fruit or vegetable juice, and limit to about 4 ounces a day. – - Eat plenty of high fiber foods, such as whole grain breads, rice, pasta and cereals. Avoid foods high in sug – ars (such as candy, sweetened cereals, and sodas). – Buy a new fruit, vegetable, low-fat food, or whole grain product each time you shop for groceries. Decrease the amount of fat in your meals by baking, broiling or boiling foods and not eating fried foods. – – Limit intake of red meat by substituting fish, chicken, turkey or beans. When you eat meat, select leaner cuts and smaller portions. – Limit fried and high-fat foods, such as fries, snack chips, cheeseburgers, and pizza. – Choose low-fat milk and dairy products. Avoid salt cured, smoked, charbroiled and pickled foods. – Be sure that you eat foods rich in calcium, such as milk, yogurt and dark green vegetables. – Avoid cancer-promoting habits. • Do not smoke or use tobacco products. – Avoid second-hand smoke when at all possible. – • If you drink alcohol, use moderation. – Heavy drinkers (people who drink two or more hard drinks per day), especially those who use tobacco, have a higher risk of GI cancer and other gastrointestinal problems. Limiting the use of alcohol can reduce these risks. – Written by: Sharon M. Castellino, MD, Department of Pediatrics, Hematology/Oncology, Wake Forest University Health Sciences, Winston-Salem, NC, and Sheila Shope, RN, FNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Hospital, Memphis, TN. ® Reviewed by Jacqueline Casillas, MD; Melissa M. Hudson, MD; Wendy Landier, RN, PhD, CPNP, CPON ; and Joan Darling, PhD. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Note: Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Gastrointestinal Health | Version 4.0 | 10/13 Page 3 of 4

70 Health Link Healthy living after treatment of childhood cancer The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: No liability is assumed - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Gastrointestinal Health | Version 4.0 | Page 4 of 4 10/13

71 Health Link Healthy living after treatment of childhood cancer Endocrine Problems after Childhood Cancer: Growth Hormone Deficiency Some people who were treated for cancer during childhood may develop endocrine (hormone) problems as a result of changes in the function of a complex system of glands known as the endocrine system. What is the endocrine system? Pituitary gland The endocrine system is a group of glands Hypothalamus that regulates many body functions including growth, puberty, energy level, urine production, Thyroid and stress response. Glands of the endocrine system include the pituitary, hypothalamus, thyroid, adrenals, pancreas, ovaries (in fe- males), and testes (in males). The hypothal- Pancreas amus and pituitary are sometimes called the Adrenal glands “master glands” because they control many of the other glands in the endocrine system. Ovaries Unfortunately, some treatments given for childhood cancer can damage the endocrine system, resulting in a variety of problems. What are hormones? Testes Hormones are chemical messengers that carry information from the endocrine glands through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hor- mones, adrenal and thyroid hormones) that work together to maintain specific bodily functions. What is growth hormone deficiency? Growth hormone (GH) is made by the pituitary gland. In order for children to grow to their full height potential, they need adequate amounts of GH. GH works with thyroid hormone, exercise, proper nutrition, and rest to help children and teenagers grow. GH also helps maintain normal blood sugar levels and is needed for the normal development of teeth. In addition to helping with bone growth, GH affects how well the heart and blood vessels work, how the body uses fat, makes muscle, and strengthens bones, and generally influences overall health throughout life. In healthy people, GH production continues into adulthood. Adults need small amounts of GH to maintain proper amounts of fat, muscle and bone. GH may also play a role in regulating mood and emotion. Cancer treatments, such as radiation or surgery to structures in the head or brain, may cause malfunction of the glands that control growth. As a result, the pituitary gland may not make enough GH, resulting in growth hormone deficiency. GH deficiency can also occur in people who have never had cancer treatment. Signs and symptoms of growth hormone deficiency Slowing of growth (height) is one of the most obvious signs of GH deficiency in children. A GH deficient child usually grows less than 2 inches per year. Children with GH deficiency are smaller and tend to look younger than children their same age, but they usually have normal body proportions. | | Version 4.0 | Growth Hormone Deficiency Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 3

72 Health Link Healthy living after treatment of childhood cancer Adults who have GH deficiency may have a variety of different physical symptoms, such as thinning of the bones, decreased muscle strength, increased body fat, or high blood cholesterol levels. Adults may also have emotional symptoms such as feeling tired, anxious, irritable, gloomy, unmotivated, or having a decreased interest in sex. Risk factors for growth hormone deficiency Risk factors related to treatment for cancer during childhood include: Cancer treatment before reaching adult height, especially in very young patients • • Radiation to any of the following areas: Brain (cranial) – – Eye or eye socket (orbit) Ear or infratemporal region (midfacial area behind the cheekbones) – Nasopharynx (area above the roof of the mouth) – Total body (TBI) – Surgery to the brain, especially the central region of the brain where the pituitary gland is located (suprasellar • region) Recommended screening after cancer treatment All childhood cancer survivors should have a yearly physical examination including measurement of height and weight, and assessment of pubertal status, nutritional status, and overall well-being. For patients with the risk factors listed above, this screening should be done every 6 months until growth is completed. If there are signs of poor growth, an x-ray of the wrist (bone age x-ray) should be done. Other possible causes of growth problems, such as low thyroid function, should also be checked. - If GH deficiency is suspected, your healthcare provider will probably refer you to an endocrinologist (doctor who spe cializes in hormone problems). The endocrinologist will do more specific tests to evaluate the problem. How is growth hormone deficiency treated? If GH deficiency is detected, your endocrinologist will suggest treatment options for you. Usually this involves supple- menting or replacing the GH that your pituitary gland is not making on its own. Synthetic GH is given by injection. GH is usually given for several years, until the person reaches an acceptable adult height or the greatest possible height. Your endocrinologist can give you information about how much growth is possible on GH therapy. Treatment options for GH deficiency that persists into adulthood should be discussed on an individual basis with your endocrinologist. Written by: Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH Reviewed by Lillian R. Meacham, MD; Priscilla Rieves, MS, RN, CPNP; Charles Sklar, MD; Julie Blatt, MD; Melissa M. Hudson, ® . MD; Winnie Kittiko, RN, MS; and Sarah Bottomley, MN, RN, CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Growth Hormone Deficiency | Version 4.0 | 10/13 Page 2 of 3

73 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Growth Hormone Deficiency | Version 4.0 | 10/13 Page 3 of 3

74 Health Link Healthy living after treatment of childhood cancer Hearing Loss after Treatment for Childhood Cancer Some chemotherapy drugs, other medications, or radiation needed for treatment of childhood cancer can damage hearing. Hearing loss interferes with daily living. If you received these treatments, it is important to have your hearing checked and to obtain treatment if hearing loss is found. Inner ear Middle ear Outer ear How do the ears work? It’s easier to understand hearing loss if you understand how the Auditor e y nerv Ossic les ears work. The ear is made up of three main parts, known as the outer, middle, and inner ear. Outer ear Sound waves travel through the air and first enter the body through the outer ear. The part of the ear that can be seen outside the body is called the pinna. The pinna collects and funnels sound Eardrum into the auditory (ear) canal. The auditory canal is like a tunnel. It Cochlea makes the sound louder and directs it toward the middle ear. y canal Auditor Middle Ear The eardrum separates the outer ear from the middle ear, a chamber that is normally filled with air. Inside the middle ear are three tiny bones (ossicles) that form a chain connecting the eardrum to the opening of the inner ear. Sound - waves cause the eardrum to vibrate. These vibrations cause the three tiny bones in the middle ear to move, transmit ting the sound to the inner ear. Inner Ear - The inner ear is known as the cochlea, and it is filled with fluid. The cochlea contains thousands of tiny nerve end ings, known as sensory hair cells. Sounds travel in waves through the fluid of the inner ear. The sensory hair cells change the sound waves into nerve impulses that are sent to the brain by way of the auditory nerve (also known as the eighth cranial nerve). In the cochlea, the sensory hair cells are arranged in order of pitch, from low-pitched sounds (such as a man’s voice) to very high-pitched sounds (such as a bird’s chirping). Each hair cell is sensitive to a specific range of pitches. What are the types of hearing loss? Hearing loss that occurs in the outer or middle ear is called conductive hearing loss . This means that the hearing loss is due to a problem in transmission of sound from the air to the inner ear. An example of this would be changes in hearing because of fluid collection in the middle ear. Sometimes this happens when people have ear infections. The fluid “muffles” the sound when it is traveling through the middle ear. Hearing loss that results from damage to the inner ear or auditory nerve is called sensorineural hearing loss . An example of this would be damage to the sensory hair cells in the inner ear from chemotherapy. Even though sound waves still move through the inner ear fluid, they can no longer be changed into nerve impulses, so the sound does - not reach the brain. Sensory hair cells that process high-pitched sounds are usually damaged first, followed by dam age to the sensory hair cells that process lower-pitched sounds. mixed hearing loss . Hearing loss with both conductive and sensorineural components is called | Hearing Loss Page 1 of 5 | Version 4.0 | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13

75 Health Link Healthy living after treatment of childhood cancer What types of cancer therapy increase the risk of hearing loss? The following cancer treatments can potentially cause hearing loss: Chemotherapy from the “platinum” group, such as cisplatin or high doses of carboplatin • Any dose of carboplatin, if given prior to one year of age • High doses of radiation (30 Gy or 3000 cGy/rads or higher) to the head or brain, especially when the beam is • directed at the brainstem or ear Surgery involving the brain, ear or auditory (eighth cranial) nerve • Certain antibiotics (medicines used to treat infections) and diuretics (medicines that help the body get rid of • excess water) What are the effects of childhood cancer treatment on hearing? High doses of radiation to the ear or brain can cause inflammation or ear wax buildup in the outer ear, problems with fluid buildup in the middle ear, or stiffness of the eardrum or middle ear bones. Any of these problems can result in conductive hearing loss. Radiation can also damage the sensory hair cells in the inner ear, causing sensorineural - hearing loss. Damage from radiation may affect one or both ears, depending on the area of radiation treatment. Con ductive hearing loss may improve over time, but sensorineural hearing loss is usually permanent. Platinum chemotherapy can cause damage to sensory hair cells in the inner ear, resulting in sensorineural hearing loss. Most often, the effect is similar in both ears and is permanent. What are the symptoms of hearing loss? Symptoms of hearing loss may include: Ringing or tinkling sounds in the ear • Difficulty hearing in the presence of background noises • Not paying attention to sounds (such as voices, environmental noises) • • School problems (see related Health Link: “Educational Issues Following Treatment for Childhood Cancer”) Some people may have no symptoms at all • What monitoring is recommended? Testing should be done by an experienced audiologist (a professional trained in hearing disorders). Hearing is usually evaluated by a series of tests. During an audiogram, the person wears earphones and listens • for sounds of different pitches and different degrees of loudness. Speech audiometry tests the person’s ability hear single words and sentences. Tympanometry tests the status of the middle ear and the movement of the eardrum in response to a puff of air. • People who are not able to have an audiogram (such as those who are too young or who cannot understand the test instructions) can have their hearing tested using Brainstem Auditory Evoked Response (BAER). The person - having this test is usually given medicine so that they go to sleep, and then their brainwave responses to vari ous sounds are recorded. How often should hearing be tested? Everyone who had cancer treatment that can affect the ears (such as cisplatin, high doses of carboplatin, any dose of carboplatin if given prior to one year of age, high doses of radiation to the brain) should have their hearing tested | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hearing Loss | Version 4.0 | 10/13 Page 2 of 5

76 Health Link Healthy living after treatment of childhood cancer at least once following completion of treatment. The need for additional testing depends on the type and dosage of cancer treatments that were used. If hearing loss is found, testing should be repeated yearly or as advised by an audiologist. In addition, hearing should be tested anytime a hearing problem is suspected. What can be done if hearing loss is detected? If hearing loss is detected, it is important to have an evaluation by an audiologist or otologist (doctor who specializes in hearing disorders). Hearing loss can cause problems with a person’s ability to communicate and carry out daily activities. Younger children are at higher risk for school, learning, and social difficulties, and problems with language development. It is therefore very important for a person with hearing loss to find the services that will best help to - make the most of their ability to communicate well. There are many options available, and these can be used in vari ous combinations, depending on the hearing problem. make sounds louder. Several types are available, depending on the age and size of the person Hearing aids and the extent of hearing loss. Most children under 12 years of age wear a behind-the-ear model to allow for adjustments as the child grows. These are available in a variety of colors—allowing for personalization and assisting with the child’s acceptance of the hearing aid. Teenagers and adults may benefit from a smaller, in- the-ear or in-the-canal model. It is very important that the hearing aid batteries are fresh and that the hearing aid is turned to the “on” position when in use. (also known as “FM trainers”) are devices that are particularly useful in the school setting. Auditory trainers The person who is speaking (usually the teacher) wears a microphone that transmits sound over FM radio waves. The person with hearing loss wears a receiver that picks up the sound. This device can be worn alone or attached to the hearing aid and allows the person with hearing loss to hear the speaker clearly, even in a noisy environment. Other assistive devices are also available for people with hearing loss. These include telephone amplifiers and teletypewriters (TTYs—sometimes also referred to as Telephone Devices for the Deaf or TDDs). Specialized appliances designed for people with hearing loss include alarm clocks that vibrate and smoke detectors with flashing lights. Closed captioning for television is widely available. The Internet is also a helpful communication tool for people with hearing loss, providing options such as e-mail, on-line discussions, and access to informa - tion via websites. Many cell phones now offer text messaging, instant messaging, Internet access, and photo transmission. are available in video and voice/text formats. The video relay service is Telecommunication relay services - internet-based and allows a person using signed language to communicate via a video interpreter, who trans lates the signed language into voice or text. The voice/text relay service allows a person using a teletypewriter to communicate through an operator, who then relays the message to the hearing person in spoken form. may be an option for people with profound hearing loss who are unable to benefit from Cochlear implants hearing aids. These electronic devices are surgically placed behind the ear and electrodes are threaded into the inner ear. A microphone and speech processor are then used to transmit sound to the electrodes, stimulating the auditory nerve and allowing sound perception by the brain. After the cochlear implant is installed, auditory training is given for a period of time to teach the individual to recognize and interpret sounds. Alternate or supplementary communication methods , including speechreading, signed language and cued speech, are available for people with significant hearing loss. Spoken language may also be an option, but - usually requires an intensive educational approach with speech therapy. In the United States, healthcare orga nizations that receive federal funding are required to provide sign language interpreters when requested by a patient. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hearing Loss | Version 4.0 | 10/13 Page 3 of 5

77 Health Link Healthy living after treatment of childhood cancer in the United States include services through local public school Community and educational resources districts or referral agencies (available under the IDEA legislation, PL 105-17), such as intensive speech therapy and auditory trainers for classroom use. Sometimes special accommodations, such as seating in the front of - the classroom are all that is needed, but this usually requires that the parent request an Individualized Educa tion Plan (IEP) for the child through the school district (see related Health Link: “Educational Issues Following Treatment for Childhood Cancer”). Many hospitals have a teacher or school liaison that can assist with arrang - ing for the IEP and other specialized services that may be needed. The Americans with Disabilities Act (ADA, PL 101-336) guarantees people with hearing loss equal access to public events, spaces and opportunities, includ - ing text telephones and telephone amplifiers in public places, and assistive listening devices in theaters. Some theaters also offer special showings of newly released movies with captioning. What can I do to protect my hearing? If you have experienced hearing loss, or have received therapy that has the potential to damage your hearing, you - should discuss this with your healthcare provider. Be sure to obtain prompt evaluation and treatment for ear infec tions, swimmer’s ear, and earwax impaction. Whenever possible, ask your healthcare provider to consider alternatives to medications that have the potential to cause further hearing loss, including certain antibiotics (aminoglycosides such as gentamicin), certain diuretics (“loop” diuretics, such as furosemide), salicylates (such as aspirin) and med - ications for high iron levels. You should also take care to protect your ears from loud noises. In fact, loud noises can cause significant damage to your ears. Examples of items and activities that can be hazardous to your hearing include: Occupations Appliances Recreation Firefighters Power saws Hunting Boating or water skiing Construction workers Vacuum cleaners Motorcycling or four-wheeling Farmers Lawn mowers Stereo headphones Yard trimmers or leaf blowers Airport workers Cab, truck, and bus drivers Amplifiers Hair stylists (due to constant exposure to loud hair dryers) If you cannot avoid exposure to noise, you should: • Wear hearing protectors such as ear plugs or ear muffs Limit periods of exposure to noise (for example, if you are at a loud concert go to a quieter area for a while to • give your ears a break) • Be aware of the noise in your environment and take control of it when you can ® Written by Wendy Landier, RN, PhD, CPNP, CPON , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Portions adapted from “Noise and Hearing Loss, Do You Know...An Educational Series for Patients and Their Families,” St. Jude Chil - dren’s Research Hospital, Memphis, TN (used with permission). ® ; Debra Friedman, MD; Smita Bhatia, MD, MPH; Louis S. Constine, MD; Reviewed by Kathleen Ruccione, RN, PhD, FAAN, CPON ® . Melissa M. Hudson, MD; and Revonda Mosher, RN, MSN, CPNP, CPON | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hearing Loss | Version 4.0 | 10/13 Page 4 of 5

78 Health Link Healthy living after treatment of childhood cancer Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hearing Loss | Version 4.0 | 10/13 Page 5 of 5

79 Health Link Healthy living after treatment of childhood cancer Keeping Your Heart Healthy after Treatment for Childhood Cancer Most childhood cancer survivors do not develop heart problems; however, certain types of cancer treatment given during childhood can sometimes result in problems with the heart. Because heart problems may occur many years after cancer treatment, it is important for childhood cancer survivors to be aware of any treatments they may have received that can affect the heart. That way, they can take steps to keep their heart healthy, including regular medical check-ups and tests to monitor heart function. And if a problem develops, it can be detected and treated early. How does the heart work? Blood vessels The heart is a muscular organ that is at the center of the body’s circulatory system. The heart is responsible for pumping blood with oxygen and nutrients to body tissues. There are four cham - bers (two atria and two ventricles) within the heart that work Valves together to pump blood. Valves direct the flow of blood through the heart chambers and into the blood vessels. The rhythm of heart contraction and rate of the heartbeat are coordinated by nerves that send electrical impulses to different parts of the heart. A thin a Atri ericardium P membrane (pericardium) surrounds and protects the heart and anchors it within the chest. What types of cancer treatments can cause heart Electrical system Ventric les problems? The heart can be affected by certain types of chemotherapy and by radiation therapy. Anthracycline chemotherapy The anthracyclines are a type of chemotherapy used to treat many childhood cancers. This type of chemotherapy can sometimes affect the heart. Commonly used anthracyclines include: ® • ) Doxorubicin (Adriamycin ® Daunorubicin/daunomycin (Cerubidine ) • ® • Idarubicin (Idamycin ) ® Mitoxantrone (Novantrone ) • • Epirubicin Radiation therapy Heart problems may also result from radiation therapy to the heart or surrounding tissues. This includes radiation to the following areas: • Chest or thorax (including mantle, mediastinal, and axillary treatment fields) • Spine (chest or “thoracic” portion) • Abdomen • Total body irradiation (TBI) | Version 4.0 | | 10/13 Heart Health Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Page 1 of 6

80 Health Link Healthy living after treatment of childhood cancer What heart problems can occur after treatment for childhood cancer? There are several types of heart problems that may result from cancer treatments: - left ven The muscle cells of the heart may be damaged so that the heart doesn’t contract and relax normally ( • , tricular dysfunction ). cardiomyopathy • The electrical pathways that conduct impulses to control heart rhythm may be scarred or damaged, resulting in arrhythmias abnormally fast, slow, or irregular heart beats ( ). • The valves and blood vessels of the heart may be damaged, resulting in stiff or leaky valves ( valvular stenosis ). or insufficiency ). pericarditis The protective covering of the heart may become inflamed ( • pericardial fibrosis ) or scarred ( ), preventing delivery coronary artery disease The blood vessels of the heart may become scarred or blocked ( • of oxygen and nutrients to the heart and other tissues. In severe cases, these problems may result in the death of heart tissue (heart attack or myocardial infarction), a dan - gerous heart rhythm (arrhythmia), or an inability of the heart to pump blood properly (congestive heart failure). Which types of cancer treatment are associated with which heart problems? • may cause problems with heart muscle function (left ventricular dysfunction, cardiomyopathy) Anthracyclines and abnormal heart rhythms (arrhythmias). may result in scarring and stiffening of heart tissues, causing abnormal heart rhythm (ar Radiation therapy • - rhythmias) and problems with the heart muscle (cardiomyopathy), heart valves (valvular stenosis or insufficien - cy), blood vessels (coronary artery disease), and membrane surrounding the heart (pericarditis or pericardial fibrosis). Are there other risk factors for heart problems? Some other medical conditions may also increase the risk of heart problems from chemotherapy or radiation therapy. These include obesity, high blood pressure, high cholesterol or triglyceride levels in the blood, and diabetes. You may have a higher risk of having heart problems if these conditions run in your family. Heart disease is also more common in women who have gone through menopause, so female survivors who go through an early menopause may be at - higher risk. Many health behaviors can add to the risk of heart disease including smoking, having an inactive (seden tary) lifestyle, and eating a diet high in fat. Who is at risk for developing heart problems? The risk of developing a heart problem after childhood cancer treatment is related to several factors: The age of the patient at the time of cancer therapy • • The total dose of anthracycline chemotherapy The total dose of chest radiation • The amount of the heart tissue included in the radiation treatment field • • Treatment with other medications that affect heart function • The presence of other conditions that affect heart function . Most childhood cancer survivors who were treated with anthracyclines or chest radiation have no heart damage at all Some survivors have very mild changes in heart size or function that have not gotten worse over time. Only a small - number of survivors have developed severe heart problems leading to heart failure or dangerous heart rhythms. Over | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Heart Health | Version 4.0 | 10/13 Page 2 of 6

81 Health Link Healthy living after treatment of childhood cancer all, the risk of developing heart problems after childhood cancer therapy is highest in survivors treated with higher doses of anthracyclines or chest radiation, especially those who received both treatments at a young age. Because we do not understand why some survivors develop heart problems after treatment for childhood cancer and others do not (even when they have gotten the same treatment), it is important for each childhood cancer survivor treated with anthracyclines or chest radiation to continue to have regular medical check-ups so that if a problem with the heart develops, it can be detected and treated early. What are the symptoms of heart problems? • No symptoms may be noted with mild to moderate heart problems. Identification of problems may only be noted by cardiac tests such as ECHO, EKG, or MUGA. Shortness of breath • Dizziness • • Lightheadedness, fainting or near-fainting Severe fatigue preventing exercise or normal play • Chest pain that feels like a heavy pressure or fullness and travels to the arm, chin or face Sweating, nausea, or • shortness of breath with chest pain Sharp piercing pain in the center or the left side of the chest (often worsens with taking a deep breath) • • Very swollen feet or ankles (so swollen that if a finger is pressed firmly on the area for a few seconds it leaves an indentation) Cough and wheezing that doesn’t go away • Periods of heart racing or throbbing • • Periods of irregular heartbeat (feeling of the heart skipping beats) How does exercise affect the heart? Aerobic exercise (brisk walking, running) is generally safe and healthy for the heart. However, some types of exercise heavy weight lifting and are particularly stressful to the heart. These include intensive isometric activities, such as - . When a person is squatting to lift a very heavy weight, the heart must work harder because blood pres wrestling sure increases as a person strains. Using lower amounts of weights to perform limited high repetition weight lifting - (lifting a lighter weight repeatedly) is less stressful to the heart and is more likely to be safe. The number of repeti tions should be limited to that which can be done with ease. Survivors treated with anthracyclines or chest radiation therapy should check with their healthcare provider before beginning any exercise program. Intensive isometric exercises should generally be avoided. Those who choose to engage in strenuous or varsity team sports should discuss appropriate guidelines and a plan for ongoing monitoring with their heart specialist (cardiologist). What other conditions or activities can make heart problems worsen? A heart affected by anthracyclines and chest radiation may not be able to handle the stress of certain conditions that dramatically increase the heart rate, blood pressure, blood volume in the circulatory system. These changes may . If your cancer treatment included medicines that can high fever or during illnesses with pregnancy occur during affect heart function, be sure that your healthcare provider is aware, so that steps can be taken to reduce the stress on your heart. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Heart Health | Version 4.0 | 10/13 Page 3 of 6

82 Health Link Healthy living after treatment of childhood cancer Some drugs can increase stress on the heart, including cocaine, diet pills, ephedra, (a dietary supplement also and ), - . These types of drugs have been associated with worsen performance-enhancing drugs known as mahuang ing of heart function and even death in childhood cancer survivors who received anthracycline chemotherapy. Are there any other special precautions? - Survivors with abnormalities of heart valves (leaky or scarred valves) or those with currently active chronic graft-ver sus-host disease (cGVHD) following hematopoietic cell transplant (HCT) may need to take an antibiotic prior to dental work or other invasive medical procedures (such as those involving the respiratory, gastrointestinal, or urinary tracts) to prevent a serious infection of the heart (endocarditis) that can result from bacteria entering the blood stream during such procedures. If you have been told that you have an abnormal heart valve or if you have active cGVHD, ask your doctor, heart specialist, and/or dentist if you should take antibiotics to prevent endocartitis before dental or other medical procedures. What monitoring is required for potential heart problems? Anyone treated with anthracycline chemotherapy or chest radiation for childhood cancer should have a yearly check- up with special attention to any symptoms relating to the heart. In addition, an electrocardiogram (ECG, EKG) should be done at the time the survivor enters long-term follow-up (usually about 2 years from completion of therapy). An echocardiogram or MUGA scan is also recommended at the first long-term follow-up visit, then according to the following schedule (or as recommended by your healthcare provider): Schedule for Echocardiogram or MUGA Scans Recommended frequency Total anthracycline Chest radiation Age at treatment* of ECHO or MUGA*** dose** Any Ye s Every year 2 Every 2 years < 1 year < 200 mg/m No 2 Every year ≥ 200 mg/m Every year Ye s Any 2 Every 5 years < 100 mg/m 1 to 4 years old 2 ≥ 100 to < 300 mg/m Every 2 years No 2 Every year ≥ 300 mg/m 2 Every 2 years < 300 mg/m Ye s 2 ≥ 300 mg/m Every year 2 ≥ 5 years old Every 5 years < 200 mg/m 2 ≥ 200 to < 300 mg/m No Every 2 years 2 Every year ≥ 300 mg/m *age at first treatment with anthracycline or chest radiation (whichever was given first) **based on total doses of doxorubicin/daunorubicin or the equivalent doses of other anthracyclines Echocardiograms are the preferred ***MUGA scans may be used for patients who received anthracycline chemotherapy without radiation; involving the heart because the test provides more detailed information regarding structural test for those who received radiation issues, including valve structures. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Heart Health | Version 4.0 | 10/13 Page 4 of 6

83 Health Link Healthy living after treatment of childhood cancer to the heart or surrounding tissues or at a dose of 40 Gy (4000 cGy) or higher radiation Survivors who received radiation at a dose of 30 Gy (3000 cGy) or higher plus anthracycline chemotherapy may be advised to undergo evaluation by a cardiologist for stress testing 5 to 10 years following radiation, with repeat testing as recom- mended by the cardiologist. blood test to check for Survivors who received radiation to the heart or surrounding tissues should also have a (lipid profile and fasting glucose or hemoglobin A1C) every 2 years. other cardiac risk factors Additional evaluation by a cardiologist is recommended for female survivors who are pregnant or planning pregnancy and received any of the following therapy: 2 Anthracycline chemotherapy at a dose of 300 mg/m or more • Radiation at a dose of 30 Gy (3000 cGy) or higher to the heart or surrounding tissues • Radiation to the heart (at any dose) in combination with anthracycline chemotherapy or high doses of cyclo- • ® ) phosphamide (Cytoxan Heart monitoring may be necessary due to the extra strain on the heart during the later stages of pregnancy and - during labor and delivery. Suggested monitoring includes an echocardiogram before and periodically during pregnan cy, especially during the third trimester, and cardiac monitoring during labor and delivery. How are the heart tests done? An electrocardiogram (ECG, EKG) is a test used to evaluate heart rate and rhythm. Electrodes (small sticky patches) are placed on the chest, arms, and legs. Wires are attached to the electrodes and the electrical impulses of the heart are then recorded. An (heart ultrasound) is used to test the muscle function of the heart and how well the heart echocardiogram pumps. The person lies on a table and has conductive jelly applied to the chest. Then a transducer (device that emits the ultrasound waves) is placed on the chest to obtain different views of the heart. Slight pressure is applied on the transducer and can sometimes cause discomfort. The test results are displayed on videotape and photographed for the doctor to study later. Many measurements are done during this test to help find out if the heart muscle is pumping blood well. The ultrasound test also looks at the valves of the heart to see that they open and close normally. Elec- trodes are usually placed on the chest to monitor the heart’s electrical impulses during the test. (multiple-gated acquisition) scan is another way of testing the motion of the heart and how well it pumps MUGA A blood to the body. During this test, a small amount of radioactive isotope is injected into a vein. The person then lies on a table and a special camera moves above the table to obtain pictures of the heart in motion. Electrodes are also placed on the chest to monitor the heart’s electrical impulses during the test. measures heart function during periods when the heart is working hard. During this test, the cardiac stress test A heart and blood pressure are usually monitored while the person walks on a treadmill. What happens if a problem with the heart is detected? Your healthcare provider will advise you about the follow-up care you need. Sometimes, a referral to a cardiologist is needed for additional evaluation and/or treatment with medications. What can be done to prevent heart problems? With increasing age, the risk of certain types of heart disease (such as heart attacks and hardening of the arteries) also increases. Factors that may increase the risk of heart problems include smoking, being overweight, eating a high | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Heart Health | Version 4.0 | 10/13 Page 5 of 6

84 Health Link Healthy living after treatment of childhood cancer fat diet, and not exercising. Medical conditions that increase the risk include diabetes, high blood pressure, and high blood cholesterol. You can reduce your risk of heart problems by: Not smoking (or quitting if you currently smoke). • Staying at a healthy body weight. • Limiting the fat in your diet to no more than 30% of calories. • • Exercising regularly for at least 30 minutes on most days of the week. If you have diabetes, high blood pressure, or high blood cholesterol, keep these under good control with diet or med- ication as recommended by your healthcare provider. Be sure to promptly report any symptoms of heart problems to your healthcare provider. Written by Debra L. Friedman, MD, REACH for Survivorship Clinic, Vanderbilt University/Ingram Cancer Center, Nashville, TN; Melissa M. Hudson, MD, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN; ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. and Wendy Landier, RN, PhD, CPNP, CPON ® ; and Joan Darling, PhD. Reviewed by Roberta G. Williams, MD; Julie Blatt, MD; Sarah Bottomley, MN, RN, CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health and accompanying Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Heart Health | Version 4.0 | 10/13 Page 6 of 6

85 Health Link Healthy living after treatment of childhood cancer Hepatitis after Childhood Cancer Treatment for childhood cancer often requires transfusions of blood and blood products. Unfortunately, some of these life-saving blood products may have contained viruses that can cause hepatitis (infection of the liver). There are two main types of hepatitis that can be transmitted through blood products (hepatitis B and hepatitis C). Before the blood supply was routinely screened for these infections, people who received blood products may have been infected with these viruses. In the United States, routine screening of blood donors for hepatitis B began in 1971. The most accu- rate screening test for hepatitis C has been in use since 1992. Survivors who received blood products prior to these dates may have been infected with these viruses. (Note: The dates that blood donor screening for hepatitis began in countries outside of the United States may be different.) Hepatitis B and C can also be spread through other types of blood contact (such as needle-sharing among drug users, tattoos, body piercing, kidney dialysis and organ transplantation). These infections can also be spread through sexual contact, or passed from mother to newborn baby during the birth process, but this is more likely to occur with hepati- tis B than with hepatitis C. What is the liver? The liver is a triangular-shaped organ tucked under the rib cage on the right side of the body. In an average adult, the liver is about the size of a football and weighs about three pounds. It is responsible for filtering out toxins from the blood, aiding with digestion and metabolism, and producing many important substances including blood-clotting proteins. hepatitis ? What are the signs and symptoms of Many people do not have symptoms of hepatitis when first infected. Some people have symptoms similar to the flu, such as fatigue, loss of appetite, nausea, vomiting, or low-grade fever. Some people may have symptoms indicating that the liver is not working well, such as yellow eyes and skin (jaundice), dark urine, severe itching, or pale (clay-col- ored) stools. In rare cases, people may become seriously ill and develop liver failure. Hepatitis may completely resolve and cause no further health problems. Unfortunately, many people who become infected with hepatitis B or C during childhood become “chronically” infected. People with chronic hepatitis may have no symptoms and feel well, but they are at risk for scarring (cirrhosis) of the liver and other complications. In rare cases, liver cancer can develop. People with chronic hepatitis infections are also at risk for spreading the infection to others. ? What are common signs of liver damage - Most people with chronic hepatitis have no signs or symptoms. Chronic infection over a long time may cause pro gressive liver damage. Signs of liver damage include enlargement of the liver and spleen, swelling or collection of fluid in the abdomen, yellow color of the eyes and skin (jaundice), and problems with blood clotting. What tests are done to check for hepatitis? A blood test can be done to check for viral hepatitis. A positive antibody test for hepatitis B or C means that the per - son has been exposed to the virus. Additional testing may then be done to determine if there is an active infection. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hepatitis | Version 4.0 | 10/13 Page 1 of 4

86 Health Link Healthy living after treatment of childhood cancer Who is at risk for hepatitis B and C? Anyone who received the following blood or serum products are at risk for hepatitis B (if transfused before 1972) and hepatitis C (if transfused before 1993): • Packed red blood cells Whole blood • White blood cells (granulocytes) • Platelets • Fresh frozen plasma • • Cryoprecipitate • Immunoglobulin preparations (IVIG, VZIG) Bone marrow or stem cells from an allogeneic donor (someone other than your self) • Other risk factors include: Blood clotting factors (such as Factor VIII or Factor IX) made before 1987 • Solid organ transplants (such as kidney, liver, or heart) before 1993 • Long-term kidney dialysis (lasting for at least several months) • Shooting or snorting drugs • Body piercing, tattoos • • Sharing razors, nail clippers, or toothbrushes with people who have hepatitis Occupational exposure to blood and body fluids • High-risk sexual behavior (such as having multiple sexual partners, not using a condom, or having anal sex) • What follow up is needed for those at risk? • Anyone who is at risk for hepatitis B or C should have blood tests done to see if they are infected. If you have chronic hepatitis, you should also: See a liver specialist for evaluation and possible treatment. • Tell your healthcare providers about all over-the-counter medications andsupplements that you are taking. • Do not drink alcohol, which can cause further liver damage. • ® or • Avoid over-the-counter pain or fever-reducing medications containing acetaminophen (such as Tylenol “aspirin-free” products). • Have a blood test to see if you have immunity to hepatitis A and B. If you do nothave immunity, get immunized against these common infections in order toprotect your liver (there is currently no vaccine to protect against hepatitis C). • Discuss your hepatitis status with your healthcare providers. (If you are pregnant,discuss this with both your obstetrician and the baby’s pediatrician.) | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hepatitis | Version 4.0 | 10/13 Page 2 of 4

87 Health Link Healthy living after treatment of childhood cancer How can the spread of chronic hepatitis be prevented? Hepatitis B and C are not spread by casual contact, such as hugging or shaking hands. However, if you have hepatitis B or C, in order to prevent spreading the infection to others you should: • Avoid direct contact of your blood and body fluids with others. Clean any spilled blood or body fluids with bleach. • Cover cuts or other open sores. • Avoid sharing sharp personal objects, such as razors, toothbrushes, nail clippers, ear or body rings, or any • object that may come in contact with blood. Be sure that new sterile needles are used for body piercing, injections, tattoos, or acupuncture. Never share • needles. • Make sure all close household members and sexual partners are screened for hepatitis B. If they do not have immunity, they should be given the hepatitis B vaccine. If you are sexually active, use barrier precautions (such as latex condoms) during intimate sexual contact. • Talk with your healthcare provider about whether your sexual partner should be tested for hepatitis C. What else can I do to keep my liver healthy? Drink plenty of water. • • Eat a well-balanced, high-fiber diet. Cut down on fatty, salty, smoked and cured foods. • • Do not take more than the recommended doses of medications. • Avoid taking unnecessary medications. Do not mix drugs and alcohol. • Do not use illegal street drugs. • Be careful about using herbs and natural supplements, especially when combined with medications. • Avoid exposure to chemicals (solvents, aerosol cleaners, insecticides, paint thinners, and other toxins) that can • be harmful to the liver. If you must use these substances, wear a mask and gloves and work in a well-ventilated area. ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Written by Wendy Landier, RN, PhD, CPNP, CPON ® . Reviewed by Melissa M. Hudson, MD; Smita Bhatia, MD, MPH; and Lisa Bashore, PhD, RN, CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hepatitis | Version 4.0 | 10/13 Page 3 of 4

88 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hepatitis | Version 4.0 | 10/13 Page 4 of 4

89 Health Link Healthy living after treatment of childhood cancer Endocrine Problems after Childhood Cancer: Hyperprolactinemia Some people who were treated for cancer during childhood may develop endocrine (hormone) problems as a result of changes in the function of a complex system of glands known as the endocrine system. Pituitar y gland What is the endocrine system? Hypothalamus The endocrine system is a group of glands that regulate many body functions including growth, Thyroid puberty, energy level, urine production, and stress response. Glands of the endocrine sys- tem include the pituitary, hypothalamus, thyroid, adrenals, pancreas, ovaries (in females), and Pancreas testes (in males). The hypothalamus and pitu- itary are sometimes called the “master glands” Adrenal glands because they control many of the other glands in the endocrine system. Unfortunately, some treat- Ovaries ments given for childhood cancer can damage the endocrine system, resulting in a variety of problems. Testes What are hormones? Hormones are chemical messengers that carry information from the endocrine glands through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) that work together to maintain specific bodily functions. What is hyperprolactinemia? Hyperprolactinemia is a condition that occurs when there is too much of the hormone known as prolactin in the body. Prolactin is a hormone made by the pituitary gland. Prolactin is important in breast development in females during pregnancy and milk production after childbirth. Too much prolactin can cause problems with functioning of the ovaries (in females) or testicles (in males). In females, high levels of prolactin can cause galactorrhea (breast milk production by a person who is not breastfeeding) and irregular or absent menstrual periods. In males, high levels of prolactin can cause galactorrhea and decreased testosterone levels that may result in a diminished sex drive (libido). In preteens and teens, high prolactin levels may interfere with normal pubertal development. Risk factors for hyperprolactinemia The risk of developing hyperprolactinemia after treatment for childhood cancer is quite low. Risk factors for its development include radiation to the pituitary gland in very high doses, the development of a second tumor (usually non-cancerous) in the pituitary region, pregnancy, and certain medications and drugs (such as marijuana and alco- hol). Rarely, thyroid failure (a condition in which the thyroid gland fails to secrete enough thyroid hormone) can cause hyperprolactinemia. Correcting the thyroid problem may correct the high prolactin level. | | Version 4.0 | Hyperprolactinemia Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 2

90 Health Link Healthy living after treatment of childhood cancer Recommended screening All childhood cancer survivors should have a yearly comprehensive health check-up. If hyperprolactinemia is suspect- ed, a prolactin blood test will be done. If a problem is detected, your healthcare provider may order additional tests (such as a CT scan or MRI of the brain) and refer you to an endocrinologist (a doctor who specializes in the treatment of hormone problems) for further evaluation and treatment. How is hyperprolactinemia treated? Endocrinologists may use medications to suppress prolactin production. If a tumor is detected, surgery or radiation is sometimes needed. The length and type of treatment varies for each patient and should be discussed with your doctor. Written by Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Reviewed by Lillian R. Meacham, MD; Charles Sklar, MD; Julie Blatt, MD; Melissa M. Hudson, MD; Winnie Kittiko, RN, MS; and Susan Shaw, RN, MS, PNP. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links Note: Throughout this series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hyperprolactinemia | Version 4.0 | 10/13 Page 2 of 2

91 Health Link Healthy living after treatment of childhood cancer Endocrine Problems after Childhood Cancer: Hypopituitarism Some people who were treated for cancer during childhood may develop endocrine (hormone) problems as a result of changes in the function of a complex system of glands known as the endocrine system. Pituitar y gland What is the endocrine system? Hypothalamus The endocrine system is a group of glands that regulate many body functions including growth, Thyroid puberty, energy level, urine production, and stress response. Glands of the endocrine sys - tem include the pituitary, hypothalamus, thyroid, adrenals, pancreas, ovaries (in females), and Pancreas testes (in males). The hypothalamus and pitu - itary are sometimes called the “master glands” Adrenal glands because they control many of the other glands in - the endocrine system. Unfortunately, some treat Ovaries ments given for childhood cancer can damage the endocrine system, resulting in a variety of problems. Testes What are hormones? Hormones are chemical messengers that carry information from the endocrine glands through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) that work together to maintain specific bodily functions. What is hypopituitarism? Hypopituitarism is the decrease or lack of one or more of the pituitary hormones. The lack of three or more of the pituitary hormones is referred to as panhypopituitarism. Pituitary hormones include: • Growth hormone (GH) —stimulates the growth of bone and other body tissues, and also affects how the body uses fat, makes muscle, strengthens bones, and generally influences overall health throughout life • Adrenocorticotropic hormone (ACTH) —stimulates the adrenal gland to produce cortisol • Thyroid stimulating hormone (TSH) —stimulates the thyroid gland to produce thyroid hormones • - Reproductive hormones (gonadotropins) , including luteinizing hormone (LH) and follicle stimulating hor —stimulate the testes and ovaries to make sex hormones mone (FSH) • Antidiuretic hormone (ADH) —helps to control the balance of water in the body by controlling urine output —controls milk production in women who are breastfeeding • Prolactin | | Version 4.0 | Hypopituitarism Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 3

92 Health Link Healthy living after treatment of childhood cancer What causes hypopituitarism? Risk factors related to childhood cancer treatment include: Radiation to the brain, especially in doses of 30 Gy (3000 cGy/rads) or higher • Surgical removal of the pituitary gland • Damage to the hypothalamus or pituitary gland, which can occur during brain surgery, or can be caused by a • tumor in or near the pituitary or hypothalamus for pituitary problems include infections, severe head trauma, or the lack of development of the Other risk factors pituitary from birth. What are the symptoms of hypopituitarism? The symptoms depend on the specific hormones that are lacking. One or more of the following hormones may be affected: Adrenocorticotropic hormone (ACTH) deficiency The adrenal glands (located on top of the kidneys) are stimulated by ACTH to producecortisol. If the pituitary gland doesn’t make enough ACTH, then cortisol will not be made. Cortisol helps keep the body’s blood sugar at a normal level and helps the body deal with physical stress, such as fever or injury. For more information about ACTH deficien - cy, see the related Health Link: Central Adrenal Insufficiency. Growth hormone (GH) deficiency Growth hormone affects the growth of body tissues and bone as well as fat, muscle, and sugar metabolism. For more information about growth hormone problems, see the related Health Link “Growth Hormone Deficiency.” Gonadotropin (FSH, LH) deficiency LH and FSH control the production of male and female hormones. In males LH and FSH stimulate the testicles to make testosterone, and in females LH and FSH stimulate the ovaries to make estrogen and progesterone, resulting in development of sexual characteristics during puberty. If the body doesn’t have enough LH and FSH during puberty, there can be problems with pubertal development. For more information about male and female hormonal issues, see the related Health Links: “Male Health Issues after Childhood Cancer Treatment” and “Female Health Issues after Childhood Cancer Treatment.” Thyroid Stimulating Hormone (TSH) deficiency - TSH stimulates the thyroid gland to release thyroxin, which is important for brain development, growth, and metabo lism. People with too little thyroxin may develop the following symptoms: tiredness, sleeping too much, weight gain, slow growth, poor appetite, cold intolerance, dry skin, constipation, or hair that is dry, coarse, and thin. For more information about thyroid problems, see the related Health Link “Thyroid Problems after Childhood Cancer.” Antidiuretic Hormone (ADH) deficiency ADH (also known as “vasopressin”) is a hormone produced in the hypothalamus and stored in the pituitary gland. When the amount of water in the body is low, the pituitary gland releases ADH, sending a message to the kidneys to conserve water. This slows down the production of urine. When there is not enough ADH, too much urine will be diabetes insipidus produced, resulting in a condition known as diabetes insipidus. Symptoms of include excessive thirst and frequent urination. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hypopituitarism | Version 4.0 | 10/13 Page 2 of 3

93 Health Link Healthy living after treatment of childhood cancer What screening is recommended? - All cancer survivors should have a yearly physical examination including measurement of height and weight, as sessment of their progression through puberty, and assessment of overall well-being. If a hormone problem, such as hypopituitarism is suspected, further tests may be done and a referral may be made to an endocrinologist (doctor who specializes in hormone problems). Written by: Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Reviewed by Lillian R. Meacham, MD; Charles Sklar, MD; Julie Blatt, MD; Melissa M. Hudson, MD; Winnie Kittiko, RN, MS; and Susan Shaw, RN, MS, PNP. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Hypopituitarism | Version 4.0 | 10/13 Page 3 of 3

94 Health Link Healthy living after treatment of childhood cancer Introduction to Long-Term Follow-Up after Treatment for Childhood, Adolescent, or Young Adult Cancer Congratulations! You have “graduated” to long-term follow-up. You can now think of yourself as a cancer survi- vor, not as a cancer patient! In long-term follow-up, the goal is to help you stay as healthy as possible—to stay well and to do well in school or at work. Even though you are a cancer survivor, it is still important that you continue to have regular medical care. In some cases, your care may continue at the same hospital or clinic where you received your treatment, but you may be seen by different doctors and nurses in a special Long-Term Follow-Up Program. In other cases, you may receive care from a healthcare provider working in partnership with your treatment center, or from a provider who is closer to your home. No matter where you receive your care, it is important that you learn what you need to know about your treatment and the follow-up care that you need so that you can stay in the very best health possible. Your cancer treatment summary When you graduate to long-term follow-up, it is important that you get a record of the cancer treatment that you received. This record, known as a Summary of Cancer Treatment , should contain the following information: • Name of the disease that you had, the date when you were diagnosed, and the site/stage of the disease Da – te(s) and description(s) of any relapses Name, – address, and phone number of hospital(s) or clinic(s) where you received your care – address, and phone numbers of your cancer doctor (oncologist) and other health team members Name, responsible for your care te that your cancer treatment was completed Da – Names of all the chemotherapy medicines that you received and specific information about certain chemo- • therapy drugs as follows: – T otal doses of anthracycline chemotherapy (such as doxorubicin or daunorubicin) or cytarabine and methotrexate: How they were given (such as by mouth or into the vein), and if into the – F 2 vein, whether you received “high dose” (1000 mg/m or more in any single dose) or “standard dose” therapy – or carboplatin: Whether or not the dose was myeloablative (given during preparation for a bone marrow, F cord blood, or stem cell transplant), and whether any carboplatin was given prior to one year of age. – T otal doses of other chemotherapy agents and how they were given should be included, if available Radiation : including therapy summary, • – Part(s) of body that received radiation (radiation site or field) – Total radiation dose (including any boost doses) to each field • Name and da tes of any that you had surgeries Whether or not you received a • (bone marrow, cord blood, or stem cell trans- hematopoietic cell transplant plant), and if so, whether or not you developed chronic Graft-versus-Host Disease (cGVHD) Names of an that you received (such as radioiodine therapy or bioimmunotherapy) cancer treatment(s) y other • | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Introduction to Long-Term Follow-Up | Version 4.0 | 10/13 Page 1 of 4

95 Health Link Healthy living after treatment of childhood cancer , and treatments received for the complication(s) any significant complication(s) Names and dates of • Keep a copy of your cancer treatment summary in a safe place, and give a copy to each of your healthcare providers. Your follow-up schedule Most cancer survivors need long-term follow-up visits about once a year. During these visits, it is important to talk about your progress and check for problems that can happen after treatment for cancer. Talk with your healthcare provider about your individual situation and determine a schedule for the follow-up care that best meets your needs. Between visits Once you “graduate” to long-term follow-up care, you will usually need to identify a local healthcare provider that you can visit or call if you are injured or sick. Make an appointment for a check-up with this healthcare provider so that they can get to know you before an illness arises. If a problem comes up that may be related to your cancer treat - ment, your local healthcare provider can discuss this with your long-term follow-up team. Late effects after treatment for childhood, adolescent, or young adult cancer Problems that happen after treatment for cancer are known as “late effects.” Fortunately, most long-term survivors don’t have serious late effects, but it is important to catch any problems early. You may have already learned about some of the possible late effects that can happen after treatment for cancer. Some of the more common ones are reviewed here. Growth Treatment for cancer during childhood, especially radiation to the brain or spine, can sometimes slow or stunt growth. Yearly measurements help to predict whether you will reach a normal height. If you are “at risk” for being short as an adult, your healthcare provider may also recommend other specialized tests and treatments. Heart A small percentage of survivors treated with chest radiation or certain chemotherapy drugs known as “anthracy - clines” (such as doxorubicin or daunomycin) have problems with the heart. This is most likely to happen in people who received higher doses of these medicines, and in those who received their treatment before their heart finished - growing. Your healthcare provider may recommend tests to check your heart function, and may arrange for a cardiol ogist (heart specialist) to see you if the tests show any sign of problems. Fertility Radiation to the pelvis and certain anticancer drugs can affect sexual development and reproduction. Some survivors may be at risk for delayed puberty, infertility (inability to have children), or early menopause. Check-ups and certain blood tests can help determine if you have any of these problems. These issues are important, and if you have any concerns, you should be sure to discuss them with your healthcare provider. If there is a problem, arrangements may be made for you to see a specialist. Thyroid Head or neck radiation can sometimes cause the thyroid gland to stop working properly. This gland helps regulate growth, weight, and the balance of body chemicals. Blood tests can be done to check thyroid hormone levels. Low thyroid levels are easily treated with oral medication. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Introduction to Long-Term Follow-Up | Version 4.0 | 10/13 Page 2 of 4

96 Health Link Healthy living after treatment of childhood cancer Second Cancers Some chemotherapy drugs and radiation can increase the risk of a second (different) cancer. Some survivors may have genetic changes that put them at risk for second cancers. Tobacco, excessive sun exposure, and other chemi- cals and behaviors can also increase this risk. Talk with your healthcare provider about ways to lower your risk and to detect common cancers at an early stage. School and Work Problems with schoolwork or jobs can occur as a result of some types of cancer treatment. Psychologists can work with your local school system to make sure that any special needs are met. Also, financial assistance for education and job training may be available through government programs. Social workers can help to explain these programs. Moving toward the future Thinking about developing late effects after surviving cancer can be anxiety provoking. But it is quite possible that you will NOT develop any serious complications. And if you do, it is best to catch them early, so that you can begin treatment right away. So don’t let anxiety get in the way of taking the very best care of your health. Being treated for cancer at a young age is always a difficult experience. Having survived that experience, you have learned many things. Most likely, you are a stronger person than you were before you were diagnosed with cancer. As you move forward into your future, use those strengths to your advantage. Make healthy choices. Keep your follow-up appointments. And always remember that YOU are the most important member of your healthcare team! ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, California. Written by Wendy Landier, RN, PhD, CPNP, CPON Portions adapted from “Introduction to the After Completion of Therapy Clinic,” St. Jude Children’s Hospital, Memphis, TN, used with permission. Reviewed by Melissa M. Hudson, MD; Smita Bhatia, MD, MPH; and Scott Hawkins, LMSW. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health Introduction to Late Effects Guidelines and Health Links: and accompanying were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Introduction to Long-Term Follow-Up | Version 4.0 | 10/13 Page 3 of 4

97 Health Link Healthy living after treatment of childhood cancer No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Introduction to Long-Term Follow-Up Page 4 of 4 | 10/13 | Version 4.0

98 Health Link Healthy living after treatment of childhood cancer Kidney Health after Childhood Cancer The kidneys are vital organs responsible for filtering out waste products from the blood, controlling blood pressure, and stimulating red blood cell production. Treatment for childhood cancer can sometimes damage the kidneys. It is important to understand how the kidneys function so that you can keep your kidneys as healthy as possible. How do the kidneys work? The kidneys are two bean-shaped organs, each approximately the size of an adult fist, lo- cated below the rib cage near the middle of the back. The kidneys filter about 200 quarts of blood each day, removing harmful waste products and excess water, and returning import- ant elements (such as calcium, sodium and potassium) to the blood. Filtering occurs in tiny units inside the kidneys, known as nephrons. Each kidney has approximately one million nephrons. After the blood is filtered by the nephrons, the excess water and waste products become urine. The urine flows from the kidneys to the bladder through tubes called ureters. The bladder then stores the urine until it is full, at which time the waste is emptied from the body through the urethra. How is kidney function measured? Kidney function is measured in percentages. Two normal kidneys account for 100% of kid- ney function. A single kidney provides about 50% of kidney function. One can lead a normal life with one kidney as long as the single kidney remains healthy. When kidney function drops to less than 50% of normal, the risk of health problems increases. Serious health problems are more frequent when kidney function drops to below 20%. Dialysis or trans- plant is necessary if kidney function falls to 15% or below. What treatments for childhood cancer can cause kidney problems? Certain treatments used for childhood cancer can sometimes cause kidney problems. There may also be other risk factors present that can increase the chance of kidney problems. If you have any of the following risk factors, you should take extra care to keep your kidneys healthy: Radiation involving the kidneys , including: • Kidney (renal or flank) radiation Abdominal radiation • Total body irradiation (TBI) • Certain medications that can cause kidney damage, including: Cisplatin • Carboplatin • • Methotrexate • Ifosfamide Certain antibiotics used to treat bacterial and fungal infections, such as tobramycin, gentamicin, • and amphotericin • Certain medications used to treat graft-versus-host disease, such as cyclosporine and FK-506 (tacrolimus) | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Kidney Health | Version 4.0 | 10/13 Page 1 of 3

99 Health Link Healthy living after treatment of childhood cancer Other risk factors that may increase the chance of kidney problems include: (surgical removal of a kidney)—see the related Health Link “Single Kidney Health” Nephrectomy • • , such as high blood pressure, diabetes, or a tumor involving Medical conditions that may affect the kidney the kidney History of urinary tract problems , such as frequent urinary tract infections, back-flow of urine into the kidney • (reflux), or other urinary tract abnormalities • Cystectomy (removal of the bladder)—this increases the risk of chronic urinary tract infections and other kidney problems What are the signs and symptoms of a kidney problem? Swelling, especially of the feet and ankles (edema) • • Low red blood count (anemia) High blood pressure (hypertension) • People who have signs of serious kidney problems, such as edema, low red blood count, and hypertension, may • also have other symptoms, including fatigue, nausea and vomiting, drowsiness, itchy skin, or headaches. What follow up is recommended? Have a medical check-up at least yearly • . This should include a blood pressure check and urinalysis. (blood salts and minerals) • Have a blood test for kidney function (BUN and creatinine) and electrolytes at your first long-term follow-up visit (at least 2 years after completing cancer treatment). If problems are detected, follow your health care provider’s recommendations. People with low levels of blood salts and min - erals may need to take supplements (prescribed by a healthcare provider). This can be important for long-term health. For example, persistently low levels of blood magnesium can lead to heart problems. If you have had a cystectomy evaluation by a urologis t (urinary (bladder removal), you should also have an • at least once a year tract specialist) . What can I do to keep my kidneys healthy? Drink plenty of water, especially when playing sports, while out in the sun, and during hot weather. • • Call your healthcare provider immediately if you have symptoms of a urinary tract infection (burning when you urinate, urinating more frequently than usual, and/or feeling an urgent sensation to urinate). Use non-steroidal anti-inflammatory drugs with caution. These include pain or fever medicines (over-the-count - • er and by prescription) that contain aspirin, ibuprofen, acetaminophen or naproxen. These medications have been known to cause kidney damage (analgesic nephropathy), especially when taken in excessive doses or when two or more of these medications are combined with caffeine or codeine and taken over long periods of time. If you require long-term medications for management of pain, be sure to discuss the alternatives with your healthcare provider, and to choose medications that are not harmful to your kidneys. Written by Anne Mauck, RN, MSN, CPNP, Division of Pediatric Hematology Oncology,Virginia Commonwealth University Health System, Richmond, Virginia. Reviewed by Dr E. Clifton Russell; Dr. Nancy L. Dunn; Dr. Gita Massey; Dr. Vimal Chadha; Elizabeth Hall, CPNP; Kevin Oeffinger, ® ; Daniel Green, MD; Melissa M. Hudson, MD; Smita Bhatia, MD, MPH; Catherine L. MD; Wendy Landier, RN, PhD, CPNP, CPON Woodman, MD; and Josee Pacifico RN, BSc (N). | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Kidney Health | Version 4.0 | 10/13 Page 2 of 3

100 Health Link Healthy living after treatment of childhood cancer Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Kidney Health | Version 4.0 | 10/13 Page 3 of 3

101 Health Link Healthy living after treatment of childhood cancer Limb Sparing Procedures What is a “limb sparing procedure”? A limb sparing procedure is a surgical operation that replaces a diseased bone and reconstructs a functional limb by using a metal implant, a bone graft from another person (allograft), or a combination bone graft and metal implant (allo-prosthetic composite). What are the potential late effects after a limb sparing procedure? —For people who had reconstruction with a bone graft, nonunion Nonunion • (non-healing) of the bones is a possible late complication. In the allograft procedure, the portion of bone removed due to tumor is replaced with donated bone. Nonunion occurs when one or both ends of the replaced bone do not heal, making fracture more likely, especially if the area is stressed. Surgery for additional bone grafting may be necessary. • Limb-length discrepancy —Bones are constantly growing during childhood and adolescence, until adult height is reached. Each bone has a growth plate (area where growth activity occurs). Often, bone cancers are located near the growth plate, requir - ing removal of this area during the limb sparing procedure. Since the reconstructed section of bone cannot grow, a difference (discrepancy) in limb-length may occur over time. Surgeries or other procedures may be necessary to allow for growth. - —Sometimes the implanted joint can loosen or wear out, es Prosthetic loosening • pecially in people who are active. These complications may require further surgery to tighten or replace part or all of the implant. Any loosening of the implant should be reported to your orthopedic surgeon. Contractures • —After a limb sparing procedure, muscles, tendons and ligaments sometimes stiffen or shrink, forming contractures (permanent tightening of the joint). This is more likely to occur in people who are not physically active. Periodic follow-up with a physical and/or occupational therapist helps prevent contractures from forming. • —for revision of prosthesis as a person grows in height. Additional surgery may be needed —may result if the person becomes physically inactive. • Obesity —some people may develop persistent problems with pain and/or infection. Chronic pain and/or infection • What is the recommended follow-up care after a limb sparing procedure? Follow-up visits are usually done by the orthopedic surgeon (bone specialist) every 6 months until the • . The follow-up intervals may lengthen as time progresses. person is fully grown, then every year are usually done at least yearly. X-rays • Life-long follow-up • by an orthopedic surgeon (ideally by an orthopedic oncologist) is recommended. Limitation of certain physical activities • is sometimes necessary. What can you do to promote health after limb sparing surgery? Physical and occupational therapy • are important for successful rehabilitation after limb sparing surgery. Both help maintain the best limb function. passive and active range-of-motion exercises | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Limb Sparing Procedures | Version 4.0 | 10/13 Page 1 of 2

102 Health Link Healthy living after treatment of childhood cancer , fever at the surgical site, or if you develop other signs of infection or any swelling, redness , • If there is pain contact your healthcare provider promptly . Antibiotics may be needed prior to dental procedures (including teeth cleaning) other invasive , and for • medical procedures such as those involving the respiratory, gastrointestinal, or urinary tracts. Infection can result if bacteria enter the bloodstream during these procedures and become attached to the internal metal The potential need for antibiotics should be components (screws, plates, rods, joints) of the endoprosthesis. . discussed with your orthopedic surgeon and your dentist problem when going through security screening Some metal implants may pose a • , such as at the airport. It carry a medical letter indicating that you received treatment for bone cancer and have a metal is good idea to implant. Written by Asako Komiya, RN, MSN, PNP, Division of Pediatrics, City of Hope National Medical Center, Duarte, CA. Reviewed by Dominic Femino, MD; Neyssa Marina, MD; Winnie Kittiko, RN, MS; Catherine L. Woodman, MD; Melissa M. Hudson, ® MD; and Revonda Mosher, RN, MSN, CPNP, CPON . Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health and accompanying were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Limb Sparing Procedures | Version 4.0 | 10/13 Page 2 of 2

103 Health Link Healthy living after treatment of childhood cancer Liver Health after Childhood Cancer Treatment for childhood cancer can sometimes damage the liver. It is important to know about how the liver functions so that you can keep your liver as healthy as possible. What is the liver? The liver is a triangular-shaped organ tucked under the rib cage on the right side of the body. In an average adult, the liver is about the size of a football and weighs about three - pounds. The liver is responsible for filtering out toxins from the blood, aiding with diges tion and metabolism, and producing many important substances, including blood-clotting proteins. What are the signs and symptoms of liver damage? Many people with liver damage have no symptoms at all. Some people may develop jaundice (yellowish eyes and skin), dark urine, pale (clay-colored) stools, severe itching, easy bruising or bleeding, chronic fatigue, nausea, loss of appetite, or other symptoms. The liver sometimes enlarges (hepatomegaly), and as liver damage increases, the liver may become hard (fibrosis) and scarred (cirrhosis). Eventually, there can be accumulation of fluid in the abdomen (ascites), swelling of the spleen (splenomegaly), or bleeding into the esophagus or stomach. Very rarely, liver cancer may develop. Who is at risk? People who had high doses of radiation (30 Gy or 3000 cGy/rads or higher) to the following areas may be at risk for liver problems: • Upper abdomen or whole abdomen Liver • The following chemotherapy drugs also have the potential to cause liver damage, although the most likely time for this to happen is during treatment or shortly after treatment ends. It is very uncommon for these medicines to cause liver problems years after treatment: • Methotrexate • Mercaptopurine Thioguanine • Other risk factors include: Medical conditions that involve the liver, such as a liver tumor or surgical removal of a large portion of the liver • Pre-existing liver problems • Excessive alcohol use • Chronic liver infection (hepatitis)—see related Health Link: “Hepatitis after Childhood Cancer” • • History of multiple transfusions • Chronic graft-versus-host disease (as a result of bone marrow, cord blood, or stem cell transplant) | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Liver Health | Version 4.0 | 10/13 Page 1 of 3

104 Health Link Healthy living after treatment of childhood cancer What tests are done to monitor the liver? The following blood tests are used to monitor the liver. monitor levels of specialized proteins that are normally present inside liver cells. If liver • Liver enzyme tests cells are damaged, these proteins can leak out, causing high blood levels of liver enzymes. The most common liver enzyme tests are: – Alanine aminotransferase (ALT), sometimes also called SGPT – Aspartate aminotransferase (AST), sometimes also called SGOT • Liver function tests are indicators of how well the liver is working. Common liver function tests include: Bilirubin (a waste product formed during the breakdown of red blood cells) – Albumin (a major blood protein that is produced by the liver) – – Prothrombin Time (PT), a measure of blood clotting , including specific tests for viral hepatitis A, B, and C Tests for liver infection • Test to check for iron overload • (ferritin) related to multiple transfusions What follow up is needed for those at risk? when the survivor enters (including ALT, AST, and bilirubin) should be done A blood test to evaluate the liver . Those who have undergone a bone marrow, cord blood, or stem cell transplant should into long-term follow-up also have a blood test to check for iron overload (ferritin). The liver should also be checked for enlargement by a healthcare professional during yearly physical examinations . If problems are identified, additional tests and a referral to a liver specialist may be recommended. People at risk for hepatitis may need further testing (see related Health Link, “Hepatitis after Childhood Cancer”). What can I do to keep my liver healthy? If you do not have immunity to hepatitis A and B, get immunized against these common infections in order • to protect your liver (there is currently no vaccine to protect against hepatitis C). You can find out if you have immunity to hepatitis A and B by having a blood test (Hepatitis A IgG antibody and Hepatitis B surface antibody). If you drink alcohol, do so in moderation. • • Drink plenty of water. • Eat a well-balanced, high-fiber diet. Cut down on fatty, salty, smoked and cured foods. Do not take more than the recommended doses of medications. • • Avoid taking unnecessary medications. Do not mix drugs and alcohol. • Do not use illegal street drugs. • Check with your healthcare provider before starting any new over-the-counter medications or herbs and sup - • plements to be sure that they do not have harmful effects on the liver. If you are sexually active, use barrier protection (such as latex condoms) during intimate sexual contact to pre • - vent infection by viruses that can damage the liver. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Liver Health | Version 4.0 | 10/13 Page 2 of 3

105 Health Link Healthy living after treatment of childhood cancer Avoid exposure to chemicals (solvents, aerosol cleaners, insecticides, paint thinners, and other toxins) that can • be harmful to the liver. If you must use these substances, wear a mask and gloves and work in a well-ventilated area. ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Written by Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Melissa M. Hudson, MD; Smita Bhatia, MD, MPH; and Billie Buchert RN, BSN. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Note: Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health and accompanying Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Liver Health | Version 4.0 | 10/13 Page 3 of 3

106 Health Link Healthy living after treatment of childhood cancer Male Health Issues after Treatment for Childhood Cancer The effects of childhood cancer therapy on male reproductive function depend on many factors, including the boy’s age at the time of cancer therapy, the specific type and location of the cancer, and the treatment that was given. It is important to understand how the male reproductive system functions and how it may be affected by therapy given to treat cancer during childhood. The male reproductive system Ureter The male reproductive system contains many structures and is controlled by the pituitary gland in the brain. The testicles are located in the scrotum Vas deferens (the loose pouch of skin that hangs behind the penis). The testicles are Seminal made up of Leydig cells (cells that produce the male hormone—testos - le Vesic terone) and germ cells (cells that produce sperm). When a boy enters Prostate puberty, the pituitary gland in the brain releases two hormones (FSH and Gland Urethra LH) that signal the testicles to begin producing sperm and testosterone. Epididymis As puberty progresses, testosterone causes deepening of the voice, le Testic enlargement of the penis and testicles, growth of facial and body hair, and Scrotum muscular development of the body. Penis How does cancer therapy affect the male reproductive system? (the inability to initiate a pregnancy). Infertility can occur following treatment Cancer therapy can cause infertility with certain types of to the brain or testicles, or surgery involving the male reproductive chemotherapy, radiation system. testosterone deficiency , also known as “hypogonadism” or “Leydig Another possible effect of cancer therapy is cell failure.” When this occurs, the testicles are unable to produce enough of the male hormone, testosterone. If this happens to a young boy, he will not be able to go into puberty without the help of hormones prescribed by a doctor. If it develops after puberty, a man will need testosterone therapy to maintain muscular development, bone and muscle strength, proper distribution of body fat, sex drive, and the ability to have erections. What are the causes of male reproductive problems after childhood cancer treatment? Chemotherapy of the “alkylator” type may cause (such as cyclophosphamide, nitrogen mustard and procarbazine) . The total dose of alkylating chemotherapy used during cancer treatment is important in determining the infertility likelihood of damage to sperm-producing cells. The higher the total dose, the more potential for developing infertility. Very high doses can occasionally cause testosterone deficiency. If alkylating chemotherapy was used in combination with radiation, the risk of infertility is increased, and the possibility of testosterone deficiency also exists. Radiation therapy can affect testicular function in two ways: Radiation aimed directly at or near the testicles . The sperm-producing cells (germ cells) are very sensitive • to the effects of radiation therapy. Most males who receive radiation to the testicles at doses of 3 to 6 Gy (300 to 600 cGy/rads) or higher will be infertile. The testosterone producing cells are more resistant to the effects of radiation and chemotherapy, but if testicular radiation was given in doses of 20 Gy (2000 cGy/rads) or higher, the Leydig cells may stop functioning, resulting in testosterone deficiency (in addition to infertility). Radiation to the pituitary gland in the brain • . Brain radiation can result in damage to the pituitary gland, lead - ing to low levels of the hormones (FSH and LH) needed to signal the testicles to make sperm and testosterone. Page 1 of 5 10/13 | Version 4.0 | Male Health Issues Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. |

107 Health Link Healthy living after treatment of childhood cancer Males with low levels of these hormones will need to take testosterone for the rest of their lives. However, it is sometimes possible for these men to regain fertility with the use of specialized hormone treatments. Men who have infertility as a result of brain radiation and wish to achieve fertility should see a fertility specialist. - that involves removal of both testicles (bilateral orchiectomy) will result in infertility and testosterone defi Surgery ciency. Pelvic surgery, such as retroperitoneal lymph node dissection (RPLD), or spinal surgery sometimes results in nerve damage that may prevent the ejaculation of sperm. Removal of the prostate or bladder may result in difficulties achieving an erection and/or ejaculation. In these situations, sperm production may be unaffected and fertility may still be possible by using specialized techniques, such as sperm harvesting and artificial insemination. If fertility is desired, consultation with a fertility specialist is recommended. What types of cancer therapy increase the risk of problems with the male reproductive system? • Chemotherapy - the class of drugs called “alkylators” can cause infertility when given in high doses. Very high doses may occasionally cause testosterone deficiency. Examples of these drugs are: Alkylating agents: – Busulfan Carmustine (BCNU) – Chlorambucil – – Cyclophosphamide (Cytoxan“) Ifosfamide – – Lomustine (CCNU) – Mechlorethamine (nitrogen mustard) – Melphalan – Procarbazine Thiotepa – Heavy metals: Carboplatin – – Cisplatin Non-classical alkylators: Dacarbazine (DTIC) – Temozolomide – Radiation therapy to any of the following areas may cause infertility. • Testicles – Pelvis (including iliac/inguinal/femoral, bladder, prostate, total nodal, and “inverted Y” fields) – – TBI (total body irradiation) Head/brain (cranial)—if dose was 30 Gy (3000 cGy/rads) or higher – | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Male Health Issues | Version 4.0 | 10/13 Page 2 of 5

108 Health Link Healthy living after treatment of childhood cancer In addition to causing infertility, high doses of radiation to the testicles or pelvis (usually 20 Gy or higher) or brain (usually 30 Gy or higher) may also cause testosterone deficiency. Surgeries that may cause infertility or disrupt normal sexual functioning include: • – Removal of both testicles (this surgery will always result in infertility) Retroperitoneal lymph node dissection (RPLD) – Removal of tumor in the retroperitoneal area – Cystectomy (removal of the bladder) – Prostatectomy (removal of the prostate) – – Spinal surgery – Removal of tumor near the spinal cord In addition, removal of both testicles will result in infertility and testosterone deficiency. What monitoring is recommended? Males whose treatment places them at risk for problems with the reproductive system should have a yearly check-up that includes careful evaluation of their hormone and puberty status. Blood may be tested for hormone levels (FSH, LH, and/or testosterone). If any problems are detected, a referral to an endocrinologist (hormone specialist), urologist (specialist in the male reproductive organs) and/or fertility specialist may be recommended. Boys who have had both testicles removed should have regular checkups with an endocrinologist starting at about age 11. What can be done for testosterone deficiency? Males with low testosterone levels should receive testosterone replacement therapy. Testosterone is available in several forms, including skin patches, injections, and topical gel. Your endocrinologist will determine which form of therapy is best for you. How will I know if I am infertile? Infertility is not related to sexual function. Some men with infertility may notice a decrease in the size or firmness of the testicles, but in others, there are no physical indications of infertility. Males who had surgical removal of both testicles will not be able to make sperm, and infertility will be permanent. In other males, the only certain way to check for sperm production is to have a semen analysis performed. This test checks the appearance, movement and concentration of sperm in the semen. A semen analysis that shows azoosper - mia (no sperm in the semen sample) on more than one sample is an indicator of infertility. Sterility following radiation is likely permanent. However, recovery of sperm production may occur months or years after the completion of chemotherapy in some men. For others, chemotherapy damage may be permanent. It is not possible to determine if sperm production will resume, especially if chemotherapy ended only a few years prior to the always assume that you can make someone pregnant unless you are absolute semen analysis. For this reason, - ly sure that you cannot !! | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Male Health Issues | Version 4.0 | 10/13 Page 3 of 5

109 Health Link Healthy living after treatment of childhood cancer When should I get a semen analysis? - Any sexually mature male who is concerned about fertility should have a semen analysis performed. Most non-pedi atric hospitals will be able to perform a semen analysis. Not all insurance companies cover the cost of this analysis, so you should check with your insurance company to be sure, or check with the hospital or clinic regarding the costs of this procedure. If the semen analysis results are within normal limits, natural conception can occur. What if the sperm count is low? If the results show no sperm (azoospermia) or very low sperm counts (oligospermia), the test should be repeated sev - eral times. Sperm recovery following chemotherapy may take as long as 10 years, so if you have had chemotherapy that may cause low sperm counts, it may be important to check periodically over several years. Also, men’s sperm counts vary considerably from day to day, so sub-normal test results may improve if additional samples are checked after waiting a month or two. Sperm production and quality may continue to improve as more time passes from the chemotherapy treatment. Men who have low sperm counts cannot rely on this to prevent pregnancy. Pregnancy can occur with low sperm . Some method of birth control must be used if pregnancy is not desired counts. If pregnancy is desired, men with low sperm counts may benefit from assisted reproductive techniques such as Intra-Cytoplasmic Sperm Injection (ICSI), a form of in vitro fertilization. A consultation with an infertility specialist is helpful in order to obtain further information regarding these options. What are my options if there are no sperm in the semen analysis? - If semen analysis shows no sperm (azoospermia), and children are desired, a consultation with a doctor who spe cializes in male infertility should be obtained. Medical advancements dealing with male infertility are being made. Recently, surgeons have been able to locate areas of active sperm production in the testes of men who have no sperm on semen analysis. Surgical harvesting of the sperm has resulted in pregnancies with techniques devised for men with absent or very low sperm counts. Occasionally, azoospermia may be unrelated to chemotherapy altogether, . and treatment for another disorder may be indicated Other good options for males who produce no sperm include donor insemination or adoption. Donor insemination (DI) uses sperm from another male, either from a known or anonymous donor. DI results in pregnancy with a child that is biologically related only to the mother. Additional options may include adoption of a biologically unrelated child or child-free living. How do I use the sperm cryopreserved before treatment started? Options for using banked sperm depend on the amount and quality of material saved. Men who banked sperm prior to cancer treatment will need to work with a doctor specializing in reproductive medicine, so that the cryopreserved (frozen) sperm can be used in an optimal manner. What if only one testicle was surgically removed? Although fertility and testosterone production are not usually affected if only one testicle was surgically removed, you should take precautions to protect the remaining testicle from injury by always wearing an athletic supporter with a protective cup when participating in any activities that may potentially cause injury to the groin area (such as contact sports, baseball, etc.). If your remaining testicle was treated with radiation, or if you received chemotherapy that can affect testicular function, the effects of these treatments are the same as discussed above. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Male Health Issues | Version 4.0 | 10/13 Page 4 of 5

110 Health Link Healthy living after treatment of childhood cancer What are the risks if pregnancy occurs after childhood cancer treatment? Fortunately, in most cases, there is no increased risk of cancer or birth defects in children born to childhood cancer survivors. In rare cases, if the type of cancer in childhood was a genetic (inherited) type, then there may be a risk of passing that type of cancer on to a child. You should check with your oncologist if you are not sure whether the type of cancer you had was genetic. Written by Marcia Leonard, RN, PNP, Long Term Follow Up Clinic, Department of Pediatric Hematology-Oncology, University of Michigan Medical Center, Ann Arbor, MI. Reviewed by Charles Sklar, MD; Julie Blatt, MD; Daniel Green, MD; Smita Bhatia, MD, MPH; Wendy Landier, RN, PhD, CPNP, ® CPON , and Missy Layfield. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Male Health Issues | Version 4.0 | 10/13 Page 5 of 5

111 Health Link Healthy living after treatment of childhood cancer Neurogenic Bladder following Treatment for Childhood Cancer Certain types of cancer and certain cancer treatments can cause damage to the urinary bladder. The information in this Health Link will help you to recog - Kidney nize the signs and symptoms of a neurogenic bladder. What is the urinary bladder? Ureter The urinary bladder is a hollow organ that stores urine. It is located behind Bladder the pubic bone. The kidneys filter the blood and make urine, which enters the bladder through two tubes called “ureters.” Urine leaves the bladder through Urethra another tube, the urethra. In women, the urethra is a short tube that opens - just in front of the vagina. In men, it is longer, and passes through the pros tate gland and then the penis. What is a neurogenic bladder? A neurogenic bladder is abnormal function of the bladder caused by damage to the nerves that control the bladder’s ability to fill, store and empty urine. Abnormal bladder function can cause the bladder to be underactive (not emptying completely) or overactive (emptying too frequently or quickly). People with neurogenic bladders also have a higher risk of urinary tract infections (UTIs) and kidney damage. What are the symptoms of a neurogenic bladder? There may be a sudden urge to urinate or the need to urinate frequently. There may also be dribbling during urination, straining in order to urinate, or the inability to urinate. Who is at risk of a neurogenic bladder? People who have had tumors involving the bladder, prostate, pelvis, or spine are at risk of developing neurogenic bladder. Also, people who had surgery or radiation in these areas may be at risk. How is a neurogenic bladder diagnosed? If a neurogenic bladder is suspected, an evaluation should be done by a urologist. A urologist is a physician who specializes in disorders of the urinary tract. The urologist will order tests to determine how well the bladder is able to store and empty urine, such as a voiding cystourethrogram (VCUG) or bladder cystometry. What can I do if I have a neurogenic bladder? Treatment of neurogenic bladder is based on your individual needs. Medications may be useful for an overactive bladder or for a bladder that fails to store urine properly. Surgery to enlarge the size of the bladder may be needed if the medications are not successful. Removal of urine by insertion of a small, clean tube in the urethra several times a day (intermittent catheterization) may be necessary if you cannot completely empty your bladder. This helps prevent high pressure in the bladder that interferes with flow of urine from the ureters and kidneys. | | | Version 4.0 10/13 Neurogenic Bladder Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Page 1 of 2

112 Health Link Healthy living after treatment of childhood cancer When should I call my healthcare provider? Call your healthcare provider if you are awakened more than usual during the night to urinate, if leakage of urine occurs, any time fever or pain is present, or if blood is seen in the urine. Written by Patricia Shearer, MD, MS; Pediatric Hematology/Oncology,University of Maryland Medical Center, Baltimore, MD; Michael Ritchey, MD, Pediatric Urology Associates, Phoenix, Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecti - cut Children’s Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Hematology/Oncology, Lucile Packard Children’s Hospital, Stanford University, Palo Alto, California. ® ® ; and Joan Darling PhD. ; Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Jill Meredith, RN, BSN, OCN Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: series, the term “childhood cancer” is used to desi Health Links Throughout this gnate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Neurogenic Bladder | Version 4.0 | 10/13 Page 2 of 2

113 Health Link Healthy living after treatment of childhood cancer Osteonecrosis What is osteonecrosis? Osteonecrosis is a disorder resulting from a temporary or permanent loss of blood supply to the bone. Blood carries essential nutrients and oxygen to the bones. When the blood supply is disrupted, the bone tissues (osteo) begin to break down (necrosis). This can weaken the bone and eventually result in its collapse. If this occurs near a joint, it can lead to the collapse of the joint surface, resulting in pain and inflammation (arthritis). Osteonecrosis is also referred to as avascular necrosis or “AVN,” “aseptic necrosis,” and “ischemic bone necrosis.” Osteonecrosis can occur in any bone, but most commonly affects the ends (epiphysis) of long bones such as the - thigh bone (femur), causing hip and knee problems. Other common sites include the bones of the upper arms, shoul ders, and ankles. Osteonecrosis can occur in a single bone, but more commonly occurs in several bones at one time (multifocal osteonecrosis). Osteonecrosis can sometimes be disabling, depending on what part of the bone is affected, how large an area is in - volved, and how well the bone rebuilds itself. Normal bone continuously breaks down and rebuilds itself. This process keeps the bones strong. Osteonecrosis is the result of bone tissues breaking down faster than the body can repair them. If the disorder progresses, it can lead to pain and arthritis. What causes osteonecrosis? Osteonecrosis is caused by interruption of the blood supply to the bone. If blood vessels are blocked with fat, become too thick or too small, or get too weak, they may not be able to provide the amount of blood necessary for the bone tissue to survive. What are the risk factors for osteonecrosis? Corticosteroids (such as prednisone and dexamethasone) given during cancer treatment can affect the bone and blood vessels, resulting in osteonecrosis. People who have undergone hematopoietic cell transplant (bone marrow, cord blood, or stem cell transplant) are also at risk for developing osteonecrosis. Other factors that increase the risk of osteonecrosis in people who received corticosteroid therapy or hematopoietic cell transplant (HCT) include treat - ment with high doses of radiation to weight bearing bones, treatment with older radiation approaches (before 1970), being pubertal or post-pubertal at the time of treatment, having sickle cell disease, receiving total body irradiation (TBI), undergoing an allogeneic transplant (from someone other than yourself), and having prolonged treatment with corticosteroids for chronic graft-versus-host disease following HCT. Osteonecrosis is most likely to occur during the time that cancer is being treated, but it can also sometimes happen after completion of cancer therapy. Steroids and osteonecrosis Corticosteroids (such as prednisone and dexamethasone) are commonly used for treatment of many cancers, such as leukemia and lymphoma. Dexamethasone is also sometimes used for treatment of nausea and vomiting associ - ated with chemotherapy and to control brain swelling. There is no clear explanation as to how corticosteroids cause osteonecrosis, but it is believed that they may interfere with the body’s ability to break down fatty substances. These substances can clog the blood vessels, causing them to narrow. This reduces the amount of blood that gets into the bone. What are the symptoms of osteonecrosis? People in the early stages of osteonecrosis may not have any symptoms. However, as the disorder progresses, most - people will experience some joint pain. At first, the person may only experience pain when bearing weight on the af | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Osteonecrosis | Version 4.0 | 10/13 Page 1 of 4

114 Health Link Healthy living after treatment of childhood cancer fected bone or joint. As the disorder progresses, symptoms may be present even at rest. Pain may develop gradually and its intensity can range from mild to severe. If osteonecrosis progresses and the bone and surrounding joint surfaces collapse, the pain can increase considerably - and may become severe enough to limit movement in the affected joint. The period of time between the first symp toms of osteonecrosis and the loss of joint function is different for each person and ranges from several months to years. How is osteonecrosis diagnosed? is usually the first test to be done when osteonecrosis is suspected. It can help distinguish osteonecrosis An x-ray from other causes of bone pain, such as fracture. In the early stages of osteonecrosis, an x-ray may appear normal, so other tests may need to be done to establish the diagnosis. Once the diagnosis has been made, and in the later stages of osteonecrosis, x-rays are useful in monitoring the course of the condition. MRI is one of the most useful tools in diagnosing osteonecrosis because it can detect osteonecrosis in the earliest stages, when symptoms are not are sometimes used to diagnose osteonecrosis. They are useful because one scan can show Bone scans yet present. all the areas in the body affected by osteonecrosis. However, bone scans do not detect osteonecrosis at the earliest provides a three-dimensional image of the bone and can be useful in determining the extent of CT scan stages. A such as a bone biopsy can conclusively diagnose osteonecrosis, but are not Surgical procedures bone damage. commonly done. How is osteonecrosis treated? The goals of treatment for osteonecrosis are to improve the person’s use of the affected joint, reduce pain, stop bone damage, and ensure joint survival. Treatment can be conservative or surgical. In order to decide the best treatment for a patient, the following factors are considered: The person’s age • • The stage of the disorder (early or late) The location and the amount of bone affected (small or large) • The status of cancer and cancer treatment • Conservative treatment • —to reduce pain Medication • Reduced weight bearing —to slow the damage and promote natural healing. Crutches may be recommended to limit weight or pressure on the affected joint. —to keep the joints flexible. This is also important to maintain movement and Range of motion exercises • increase circulation in the joints. This can promote healing and may relieve pain. Physical therapists can teach the correct exercises. —to induce bone growth Electrical stimulation • Conservative treatments may be used alone or in combination, but they may not provide lasting improvement. Some people may require surgery to permanently repair or replace the joint. Surgical Treatment Core decompression • —is a surgery that removes the inner layer of bone. This may reduce pressure within the bone and create an open area for new blood vessels to grow. Sometimes a piece of healthy bone with good | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Osteonecrosis | Version 4.0 | 10/13 Page 2 of 4

115 Health Link Healthy living after treatment of childhood cancer blood vessels (bone graft) is put in this area to speed up the process. This procedure works best in the early stages of osteonecrosis and should help relieve pain and promote healing. • —is a surgery that involves taking out a piece of bone, usually a wedge, to reposition the bone so Osteotomy that the tissue lacking blood supply (avascular area) bears less weight than an adjacent healthy area. • —is also referred to as joint replacement. The affected bone is removed and replaced with an Arthroplasty artificial joint. This treatment may be needed in the late stages of osteonecrosis and when a joint is destroyed. Health Promoting Behaviors/Interventions Avoid activities that put a lot of stress on your joints. Activities that stress the joints include running, jumping, • football, soccer, volleyball, basketball and similar sports. Activities that are good for joints with osteonecrosis are swimming and bicycling. Be consistent with recommended exercises. • Rest joints when they hurt. • Let your healthcare provider or physical therapist know if there are any changes in your symptoms. • • Take pain or anti-inflammatory medications as prescribed. Resources • National Institute of Arthritis and Musculoskeletal and Skin Diseases National Institutes of Health, 1 AMS Circle, Bethesda, MD 20892-3675 Phone: 301-495-4484 or 877-226-4267 (toll free), TTY: 301-565-2966 Fax: 301-718-6366. Web: www.niams.nih.gov/hi/topics/osteonecrosis/index.htm American Academy of Orthopaedic Surgeons • 6300 North River Road, Rosemont, IL 60018 www.aaos.org Phone: 847-823-7186 (toll free). Web: Adapted by Katherine Myint-Hpu, MSN, MPH, PNP, Georgetown University Hospital, Washington, D.C., from “Health Topics: Questions and Answers about Avascular Necrosis” by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, January 2001, and “Avascular Necrosis – Do You Know” by St. Jude Children’s Research Hospital, used with permission. Reviewed by Neyssa Marina, MD; Joan Darling, PhD; Melissa M. Hudson, MD; Smita Bhatia, MD, MPH; and Sarah Bottomley, MN, ® RN, CPNP, CPON . Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Osteonecrosis | Version 4.0 | 10/13 Page 3 of 4

116 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Osteonecrosis | Version 4.0 | 10/13 Page 4 of 4

117 Health Link Healthy living after treatment of childhood cancer Osteoradionecrosis after Childhood Cancer What is osteoradionecrosis? Osteoradionecrosis (ORN) is a problem with bone healing that can occur in people who received high doses of radi- ation, particularly to the jaw. This complication can occur after dental surgery or extraction of teeth. High doses of radiation can decrease the bone’s blood supply. If this happens, the bone gets less oxygen than it needs, resulting in the death (necrosis) of bone tissue. The most commonly affected bone is the jawbone (mandible). Who is at risk for osteoradionecrosis? Survivors who received high doses of radiation to the jaw area (40 Gy or 4000 cGy/rads or higher) are at risk for this complication. Radiation fields that often include the jawbone are as follows: • Cranial (head/brain) • Nasopharyngeal (area above the roof of the mouth) • Oropharyngeal (mouth and throat) Neck or spine (“cervical” portion) • Supraclavicular (area above the collarbones) • • Mantle or mini-mantle (neck/underarm/chest areas) It is important to obtain your medical records so that you know exactly how much radiation you received and where the radiation was directed. For example, survivors exposed to radiation doses of 50 Gy or higher to the jawbone have the highest risk for the development of ORN. When does osteoradionecrosis occur? Although it is uncommon, ORN most often occurs when a survivor undergoes a dental procedure (such as pulling of tooth) or other surgery involving the jawbone. What are the symptoms of osteoradionecrosis? Symptoms of ORN may occur months to years after radiation. Common symptoms include mouth pain, jaw swelling and difficulty opening the mouth fully (trismus). How is osteoradionecrosis diagnosed? - ORN can be diagnosed by physical examination and imaging studies (x-ray, CT scan and/or MRI). Sometimes, a sur geon may need to take a sample (biopsy) of the problem area in order to make a definite diagnosis. Radiation therapy records should be reviewed to determine the location and dose of radiation that was given. How is osteoradionecrosis treated? Treatment of ORN is mainly through control of uncomfortable symptoms. Salt-water rinses and light scrubbing of affected tissues may be helpful. Antibiotics may help if a wound becomes infected. Hyperbaric oxygen therapy (oxy- gen delivered in a pressurized chamber) is sometimes used to increase the amount of oxygen given to the affected tissues and improve the chance of healing. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Osteoradionecrosis | Version 4.0 | 10/13 Page 1 of 2

118 Health Link Healthy living after treatment of childhood cancer Is there anything I can do to prevent osteoradionecrosis? People who received radiotherapy involving the jaw should: Tell their dentist that they received radiation. The dentist will then be able to get details about the radiation • treatment before doing any tooth extractions that could lead to ORN. • Have regular dental care and take good care of their teeth and gums, since the risk for cavities is higher in people who received large doses of radiation. The dentist may order daily fluoride treatments to reduce the risk of cavities and the need for extracting teeth in the future. (See related Health Link: “Dental Health”) Resources • The Oral Cancer Foundation 3419 Via Lido #205, Newport Beach, CA 92663 Phone 949-723-4400 http://www.oralcancerfoundation.org/complications/osteoradionecrosis.php Web: Written by Arnold Paulino, MD, Division of Radiation Oncology, MD Anderson Cancer Center, Houston, Texas. ® ; and Joan Darling, PhD. Reviewed by Jacqueline Casillas, MD; Wendy Landier, RN, PhD, CPNP CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying Introduction to Late Effects Guidelines and Health Links: Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Osteoradionecrosis | Version 4.0 | 10/13 Page 2 of 2

119 Health Link Healthy living after treatment of childhood cancer Peripheral Neuropathy What is peripheral neuropathy? Peripheral neuropathy, or damage to the peripheral nerves (nerves outside the brain or spinal cord), is a potential side effect of chemotherapy drugs and may cause the hands or feet to hurt, tingle, and feel numb or weak. Though the discomfort is felt in a muscle or joint, the real damage is to the nerves that control the muscles. Nerves are made up of special cells that carry messages to and from the brain and spinal cord. Damage to the nerve is often caused by a breakdown of the myelin sheath, the coating around nerve fibers that acts as an electrical insulator. There may also - be direct damage to the nerve cells from pressure or trauma (for example from a tumor or surgery). Symptoms usual ly start during treatment and persist, and are not late in onset. Symptoms often improve once treatment has stopped, but for some survivors symptoms may persist for months or years. Symptoms • Burning, tingling, or prickling sensation usually in the hands or feet • Numbness or sensitivity to pain or temperature Extreme sensitivity to touch • Sharp shooting pain • • Poor balance or coordination Loss of reflexes • Muscle weakness • Noticeable changes in the way you walk • Muscle weakness may begin around the arch of the foot and in the palm of the hand. It may be difficult to grip things or to perform certain tasks or activities such as writing, buttoning clothes, or tying shoes. The muscles that pull the foot up may weaken and the reflexes may be lost, causing the front part of the foot to fall flat to the floor. This may result in poor balance or coordination, especially when tired. There may be a tendency to drag the feet or lift them high to prevent the feet from dragging. Who is at risk? People who have received any of the following chemotherapy drugs may be at risk: Vincristine • Vinblastine • • Cisplatin • Carboplatin - People at highest risk for peripheral neuropathy are those who have received higher doses of these drugs or com binations of these drugs. Other risk factors include surgery, severe weight loss, and diabetes or a pre-existing nerve disease. Prolonged pressure on nerves from artificial limbs, wheelchairs, or crutches can also contribute to nerve damage. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Peripheral Neuropathy | Version 4.0 | 10/13 Page 1 of 3

120 Health Link Healthy living after treatment of childhood cancer Treatment Rehabilitation services - Because there is no treatment that can cure or reverse nerve damage, treatment is directed toward symptom man agement. Physical therapy is often helpful in providing exercises to improve strength, balance, and coordination. Occupational therapy can provide help to improve hand/eye coordination and other skills needed for daily life. Orthotic devices Support for feet or ankles can be improved with orthotic devices. Arch supports or splints help prevent the arch from flattening and help improve walking. Splints called ankle-foot-orthoses (AFOs) may be recommended to prevent the ankle from moving too much from side to side and to support the foot when walking. Pain management Your healthcare provider may prescribe medication to control the pain, tingling, and burning sensation. The type of medication depends on the frequency and severity of pain. It is also important to know that some medications will have side effects of their own. Elastic stockings, warm packs, or exercise may also help with the discomfort. These - measures will not replace medication but may decrease the need for them. They may also assist in improving mobili ty and independence. Additional recommendations —Just as shoes that are too tight can cause throbbing, rubbing, Avoid shoes that are too tight or too loose • and cramping, shoes that are too loose can worsen pain and may not provide enough support for already wob - bly feet. Well-fitting sneakers or shoes that provide support but are also flexible are best. • Be sensitive to temperature —Many people report that neuropathy feels worse in hot weather or when feet are heavily covered which may prevent adequate air circulation. —Bed sheets resting on toes can cause discomfort due to friction between the Keep feet uncovered in bed • sheet and toes. • —Massaging your hands or feet, or having someone else massage them can be extremely soothing Massage and relaxing and can increase circulation and boost endorphins (chemicals produced in the body that help control pain). —Cool water soaks to painful hands or feet can sometimes dull pain enough to fall asleep or until Cool soaks • pain medication has time to work. For additional information, contact: , 60 East 42nd Street, Suite 942, New York, NY 10165-0999 Neuropathy Association Phone: 212 692-0662 Website: www.neuropathy.org ® , “STAR” Late Effects Program, Miller Children’s Hospital, Long Beach, CA. Written by Susan Shannon, RN, MSN, CPNP, CPON Reviewed by Thanh Le, MD; Joetta Deswarte-Wallace, RN, MSN; Neyssa Marina, MD; Debra Friedma, MD; and Josee Pacifico, RN, BSc (N). | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Peripheral Neuropathy | Version 4.0 | 10/13 Page 2 of 3

121 Health Link Healthy living after treatment of childhood cancer Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Peripheral Neuropathy | Version 4.0 | 10/13 Page 3 of 3

122 Health Link Healthy living after treatment of childhood cancer Endocrine Problems after Childhood Cancer: Precocious Puberty Children treated for cancer may develop problems as a result of damage to the complex system of glands known as the endocrine system. Pituitar y gland What is the endocrine system? Hypothalamus The endocrine system is a group of glands that regulate body functions including growth, Thyroid puberty, energy level, urine production, and stress response. Glands of the endocrine system include the pituitary, hypothalamus, thyroid, ad- renal, pancreas, ovaries (in females), and testes Pancreas (in males). The hypothalamus and pituitary are sometimes called the “master glands” because Adrenal glands they control many of the other glands in the en- docrine system. Unfortunately, some treatments Ovaries given for childhood cancer can damage the hypothalamus and pituitary gland, resulting in a variety of problems. Testes What are hormones? Hormones are chemical messengers that carry information from the endocrine glands through the bloodstream. The endocrine system makes many hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) that maintain specific bodily functions. What is the normal age for puberty to begin? Puberty normally begins between the ages of 8 and 13 in girls, and 9 and 14 in boys. The timing of puberty is in- fluenced by a person’s genetic background, and the onset of puberty at a young age may run in families. Most girls begin to develop breasts and then pubic hair at around age 10 or 11. Menstrual periods usually start at around 12 to 13 years of age, but may occur earlier or later and still be normal. Boys usually begin to develop enlargement of the testicles and then pubic hair between 11 and 12 years of age. What is precocious puberty? Precocious puberty means having signs of puberty (such as pubic hair or breast growth) at an age younger than is normally expected. Most doctors agree that a girl has precocious puberty if she develops sexual traits earlier than age 8, and a boy has precocious puberty if he develops sexual traits prior to age 9. The early release of hormones that causes precocious puberty also causes a growth spurt, with rapid bone growth. Early bone maturation results in less time for growth, so the child with precocious puberty will have a final adult height that is actually much shorter than normal. | | Version 4.0 | Precocious Puberty Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 3

123 Health Link Healthy living after treatment of childhood cancer What are the risk factors for developing precocious puberty? Risk factors include: • Radiation to the head or brain, especially doses of 18 Gy (1800 cGy/rads) or higher, including the following fields: Head/brain (cranial) – Nasopharyngeal (area above the roof of the mouth) – – Eye or eye socket (orbit) Ear or infratemporal region (midfacial area behind the cheekbones) – • Female gender Younger age at the time of cancer treatment • Early puberty is also more common in overweight children. Why does precocious puberty happen? The hypothalamus and pituitary gland may be damaged after radiation treatments. The damage causes them to signal the ovaries (in girls) or testicles (in boys) to make female or male hormones at an earlier time. In other cases, signs of puberty occur early because of abnormalities in the ovaries, testicles or adrenal glands. Tests are done to learn if the cause of precocious puberty is in the brain or in another part of the body. What screening is recommended? All childhood cancer survivors should have a physical examination at least once a year, including measurement of height and weight, and evaluation of pubertal progress. If there are signs of accelerated growth or early puberty, a - blood test to check sex hormones produced in the brain (FSH—follicle stimulating hormone; LH—luteinizing hor mone), testes (testosterone) or ovaries (estradiol) may be done. Sometimes, an x-ray that measures the developmen- tal age or maturation of bone (bone age) may also be done. How is precocious puberty treated? - If a problem is detected, a referral should be made to an endocrinologist (doctor who specializes in hormone prob lems). Medications may be used to temporarily stop puberty and to decrease the rate of bone maturation. It is also important to evaluate and manage the psychological effects of beginning puberty too early. Although children with precocious puberty may have a mature physical appearance, their thoughts, emotions and behaviors are still that of their actual (chronological) age. Written by Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Reviewed by Lillian R. Meacham, MD; Priscilla Rieves, MS, RN, CPNP; Charles Sklar, MD; Julie Blatt, MD; Peggy Kulm, RN, MA; and Marcia Leonard RN, PNP. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Precocious Puberty | Version 4.0 | 10/13 Page 2 of 3

124 Health Link Healthy living after treatment of childhood cancer Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Precocious Puberty | Version 4.0 | 10/13 Page 3 of 3

125 Health Link Healthy living after treatment of childhood cancer Pulmonary Health The lungs are very important organs that supply oxygen to the body. Sometimes, treatments given for childhood cancer can cause lung damage. If you received any treatments that may cause lung problems, it is important to learn about the lungs, and what you can do to keep them as healthy as possible. How the lungs function The lungs transfer oxygen from the air to the blood, where it is circulated to the body tissues. The lungs also remove carbon dioxide, a waste product made by the body’s cells. In order for oxygen to reach the blood, it must move through tiny air sacs (alveoli) in the lungs and into tiny blood vessels (capillaries) that surround each air sac. When the air sacs become damaged or scarred, there is less area for oxygen to enter the bloodstream, and less oxygen reaches the blood. The person may then need to breathe faster in order to get enough oxygen. This can make the person feel short of breath. Other lung problems can be caused by inflammation (swelling) of the air passages in the lungs or increased mucous production as a result of irritation or infection. Symptoms can include cough, wheezing, chest pain, and shortness of breath. Am I at risk for lung problems? If you received any of the following treatments during your cancer therapy, you may be at risk for developing lung problems: Bleomycin (See the “Bleomycin Alert” Health Link for more information) • Carmustine (also known as BCNU) • Lomustine (also known as CCNU) • Busulfan • Radiation to the chest • Total body irradiation (TBI) • • Surgery to the chest or lung (this does NOT include surgery for placement of a central line, such as a Hickman, Broviac, Port-a-Cath or Mediport) Bone marrow transplant or stem cell transplant from a donor other than yourself (allogeneic transplant), if you • then developed chronic graft-versus-host disease (chronic GVHD) ® Certain chemotherapy drugs known as anthracyclines, such as daunorubicin (Daunomycin - ), doxorubicin (Adriamy ® ® ) can damage the heart and may contribute to lung problems, especially if given in ), and idarubicin (Idamycin cin combination with bleomycin, BCNU, CCNU, and radiation treatment. Other factors that may increase your risk are: Younger age at the time of cancer treatment • A history of lung infections, asthma or other lung problems • • Tobacco use or exposure to second hand smoke Inhaled drugs, such as smoking marijuana (“pot”) • | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Pulmonary Health | Version 4.0 | 10/13 Page 1 of 4

126 Health Link Healthy living after treatment of childhood cancer What problems can develop? Problems can include scarring of the lungs (pulmonary fibrosis), repeated lung infections (such as chronic bronchitis, - bronchiectasis, or recurrent pneumonia), inflammation of the lung tissues and small airways within the lungs (bron chiolitis obliterans), and rupture of the tiny air sacs in the lungs or thickening and blockage of air passages within the lungs (restrictive/obstructive lung disease). What are the symptoms of lung damage? - Symptoms may include shortness of breath, frequent coughing and/or wheezing, chest pain, and frequent lung in fections, such as bronchitis or pneumonia. Becoming easily fatigued or short of breath during mild exercise (exercise intolerance) is sometimes an early symptom of lung damage. What monitoring is recommended? • A yearly medical check-up is recommended. • Pulmonary function tests (including DLCO and spirometry) may show lung problems that are not apparent during a check-up. For this reason, it is helpful to have these tests done at least once (at least two years after completing cancer treatment) to find out if there are any problems. Your healthcare provider can decide if fur - ther testing is needed based on these results. Are there any special precautions I should take? If you have had any of the treatments listed above you should: • Get the pneumococcal (pneumonia) vaccine. • Get yearly influenza (flu) vaccines. Avoid scuba diving, unless you have had a complete check-up and have been advised by a pulmonologist (lung • specialist) that diving is safe. What can I do to prevent lung problems? • . DON’T START If you don’t smoke, If you smoke, ! Quitting is the most important thing you can do to keep your lungs and you healthy. • QUIT Avoid second-hand smoke. • Get regular physical exercise. • • Avoid inhaled drugs, such as marijuana (“pot”.) • Avoid breathing toxic fumes from chemicals, solvents, and paints. • Follow all safety rules in your workplace, such as the use of protective ventilators in some work environments. Report any unsafe working conditions to the Occupational Safety and Health Administration (OSHA). Where can a smoker find help in order to quit? Your most important resources for quitting smoking are your family, friends and your healthcare provider. Listed be - low are some additional sources of education and support: | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Pulmonary Health | Version 4.0 | 10/13 Page 2 of 4

127 Health Link Healthy living after treatment of childhood cancer Telephone Resources If you don’t have access to the Internet, you can call the following organizations to request educational materials (usually free) about how to quit smoking: American Cancer Society: 1-800-ACS-2345 American Heart Association: 1-800-AHA-USA1 American Lung Association: 1-800-LUNG-USA National Cancer Institute: 1-877-44U-QUIT On-Line Resources If you have access to the Internet, you may find the following websites helpful: smokefree.gov/explore-quit-methods Very specific tips for getting ready to quit and how to handle the first week. Also has links to support, including tele - phone and text support, in-person counseling, and information about medications and other methods for managing nicotine withdrawal symptoms. www.cdc.gov/tobacco/ The Center for Disease Control’s Tobacco Information and Prevention Source (TIPS) includes guides for quitting the tobacco habit. www.lung.org/stop-smoking/ The American Lung Association’s free on-line “Stop Smoking” program. smokefree.gov On-line assistance from the National Institutes of Health to help you quit smoking. Where can I find more information about how to keep my lungs healthy? More information about the lungs, and how to keep them healthy, is available at: www.nhlbi.nih.gov/health/public/lung/ The National Heart, Lung and Blood Institute’s web site containing general information for patients and families. www.nlhep.org/ The National Lung Health Education Program has information for patients about how to keep lungs healthy. ® Written by Adam Charlene Maxen RN, CNP, CPON ; and Sarah Friebert MD, Division of Hematology/Oncology, Akron Children’s Hospital, Akron, Ohio. Reviewed by Melissa M. Hudson, MD; Debra Friedman, MD; John R. Mussman; Neyssa Marina, MD; Wendy Landier, RN, PhD, ® ; Kevin Oeffinger, MD; and Johanne Soucy, RN, BScN CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Pulmonary Health | Version 4.0 | 10/13 Page 3 of 4

128 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Pulmonary Health | Version 4.0 | 10/13 Page 4 of 4

129 Health Link Healthy living after treatment of childhood cancer Raynaud’s Phenomenon What is Raynaud’s Phenomenon? - Raynaud’s is a condition that may cause some areas of your body to feel numb and cool in response to cold tempera tures or stress. Raynaud’s causes occasional narrowing of blood vessels, limiting blood flow for brief periods of time. This is called a vasospasm. During periods of vasospasm, the skin is deprived of oxygen, and may become pale and then turn a bluish color. As the blood vessels relax and blood flow resumes, the skin may become red. The hands and feet are most commonly affected, but Raynaud’s may also involve the nose, lips, cheeks, and earlobes. Symptoms Changes in skin color (often from white to blue to red) • Changes in skin temperature (affected areas feel cooler) • • Numbness or prickly feeling in the fingers (not thumbs) and toes • Occasional episodes of pain (described as throbbing) and swelling What happens during an attack? For most people, cold temperature or stress triggers an attack. Typically, when the body is exposed to cold, the hands and feet lose heat rapidly. In order to conserve heat, the body reduces blood flow near the skin surface and moves it deeper in the body. For people with Raynaud’s, this normal response is exaggerated by sudden spasms of the small blood vessels that supply blood to the fingers and toes. This greatly reduces the blood supply to the hands and feet, causing changes in the skin color and temperature. The first sign is often pallor (or whiteness), in response to the spasm. The skin may then appear blue (cyanotic) and feel numb or cold, because of a lack of oxygen-rich blood. Finally, the skin may turn red and become swollen, as the small blood vessels relax and dilate, and blood flow returns. Commonly, throbbing and tingling may occur in the fingers and toes as the attack ends. Raynaud’s attacks can last from seconds to hours. Who is at risk? Childhood cancer survivors who received treatment with vinblastine or vincristine sometimes develop Raynaud’s. Prevention Raynaud’s is usually a chronic condition that you may need to manage for life. Some people may see improvement slowly over several years. Prevention of attacks is key: Dress warmly when outdoors . • • . Wear socks. Avoid drafts such as when opening the refrigerator or freezer. Wear Take precautions indoors mittens when handling cold items. Use the air conditioner sparingly. Use insulated drinking glasses. . Avoid putting unprotected hands in cold water • • Do not use tobacco or illegal drugs as such as cocaine . Nicotine and cocaine constrict blood vessels and causes the skin temperature to drop, which may lead to an attack. • . Regular exercise can enhance circulation and help control stress. Exercise Control stress • . Since stress is often a trigger for Raynaud’s attacks, managing stress may help make the attacks shorter and less frequent. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Raynaud’s Phenomenon | Version 4.0 | 10/13 Page 1 of 3

130 Health Link Healthy living after treatment of childhood cancer Treatment Treatment is directed at reducing the number and severity of attacks in order to prevent tissue damage. People with Raynaud’s should follow all of the above recommendations for preventing attacks. In addition, if attacks are triggered by exposure to cold, placing the affected body part in warm water may help to stop symptoms. Other treatment meth - ods include medications and biofeedback. Medications Medications that help to dilate blood vessels and promote circulation are sometimes prescribed for management of severe symptoms. Certain prescription medications can sometimes make symptoms worse. These include birth control pills and some - heart and blood pressure medicines. If you are taking any of these medications and are having symptoms of Ray naud’s, consult with your healthcare provider regarding possible alternatives. Certain over-the-counter cold or diet pills can make symptoms worse and should be avoided. These include drugs ® ® ® that contain pseudoephedrine (such as Actifed , and Sudafed , Chlor-Trimeton ). Biofeedback Using your mind to control stress and body temperature may help to decrease the severity and frequency of attacks. - This may include guided imagery and/or deep breathing exercises. A psychologist may be helpful in designing a bio feedback program that meets your needs. ® Written by Susan Shannon, RN, MSN, CPNP, CPON , “STAR” Late Effects Program, Miller Children’s Hospital, Long Beach, CA. Reviewed by Thanh Le, MD; Joetta Deswarte-Wallace, RN, MSN; Neyssa Marina, MD; Debra Friedman, MD; Melissa M. Hudson, MD, Rebecca D. Pentz, PhD; John R. Mussman; and Josee Pacifico, RN, BSc (N). Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Note: Health Links or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni - fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Raynaud’s Phenomenon | Version 4.0 | 10/13 Page 2 of 3

131 Health Link Healthy living after treatment of childhood cancer and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. Page 3 of 3 10/13 | Version 4.0 | Raynaud’s Phenomenon Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. |

132 Health Link Healthy living after treatment of childhood cancer Reducing the Risk of Second Cancers Learning about the risk of developing a second cancer can be frustrating and anxiety provoking. After your battle with childhood cancer, the last thing you want to be reminded about is the risk of developing a second cancer during adulthood. For a variety of reasons, the risk of cancer increases for everyone as they age. Several studies have shown that as childhood cancer survivors become older, they have a slightly higher risk of developing (a second) cancer compared to people their same age in the general population. Things that can contribute to this risk are the person’s age during cancer therapy, their specific treatment, and their genetic and family history. Who is at risk for second cancer? . Some treatments for childhood cancer increase the risk People who received certain chemotherapy drugs • of second cancers. Rarely, people can developacute myeloid leukemia after treatment. Secondary leukemia usually occurs, if at all, within the first 10 years following treatment of the original cancer. The risk of develop - ing a secondary leukemia is increased for people who were treated with high doses of alkylating agents (such - as cyclophosphamide or nitrogen mustard), epipodophyllotoxins (such as etoposide or teniposide), and anthra cycline chemotherapy drugs (such as doxorubicin or daunorubicin), and for those who received an autologous hematopoietic cell transplant (HCT). People who received radiation therapy, especially at a young age • . Radiationtherapy given for childhood cancer increases the risk of developing a secondarysolid tumor as a person ages. The most common sites include the skin, breast,central nervous system (the brain and spine), thyroid gland, and bones. Incontrast to secondary leukemias, secondary solid tumors most commonly appear10 or more years after treatment. The risk of developing a secondary solid tumoris increased when radiation is delivered at high doses and over large fields tochildren at a young age. . Some cancer patients have inherited gene changes People who have a history of cancer in their family • (mutations) that increase the chances of getting a second cancer. But overall, these inherited changes are rela - tively uncommon and account for less than 10 percent of patients with cancer. Doctors suspect the presence of a cancer gene when a family history shows multiple cancers among young people in every generation, or when cancer occurs in both sides of paired organs (such as the eyes, breasts, kidneys, etc.) If you have any questions or think that cancer may “run in your family” you should talk to your healthcare provider. A review of your family medical history will tell whether genetic counseling or testing is needed. What if you are in a high-risk group? You can find out if you are at high risk for developing a second cancer by going over your cancer treatment and family history with your healthcare provider or a cancer specialist. In some cases, early or more frequent screening may be recommended to increase the likelihood that second cancers are detected early, when they are most effectively treated. Be sure to get all screening tests that are recommended for you. What monitoring is recommended? By practicing health maintenance behaviors, you can improve your awareness of changes in your body and increase the likelihood that problems will be detected at earlier stages. All childhood cancer survivors should have a yearly comprehensive health check-up . You should also have any cancer screening evaluations appropriate for you based Knowing the details of your previous medical history, including exposures to on your age, sex, and treatment history. chemotherapy, radiation, and surgery, is vital to your future health . This information should be available to you or your healthcare provider from the hospital or clinic where you received your cancer therapy. Developing a relationship with | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Reducing Risk of Cancers | Version 4.0 | 10/13 Page 1 of 4

133 Health Link Healthy living after treatment of childhood cancer a primary care provider who knows your cancer treatment history, risks of late complications, and recommended screening evaluations will improve the chances of catching problems at earlier, more treatable stages. What symptoms should I be alert for? Be sure to report any new or persistent symptoms to your healthcare provider promptly. Types of symptoms that you should report include: Easy bruising or bleeding • • Paleness of the skin Excessive fatigue • Bone pain • Changes in moles • • Sores that do not heal • Lumps Difficulty swallowing • Changes in bowel habits • • Persistent abdominal pain • Blood in the stools Blood in the urine • • Painful urination or defecation • Persistent cough or hoarseness • Shortness of breath Bloody sputum • • Discolored areas or sores in the mouth that do not heal • Persistent headaches • Vision changes Persistent early morning vomiting • What can I do to lower the risk of getting a second cancer? - . Survivors should not smoke or chew tobacco and should avoid exposure to sec Avoid cancer-promoting habits ondhand smoke when at all possible. Because skin cancers are one of the most common second cancers after child - hood cancer, especially for those treated with radiation therapy, you should take extra care to protect your skin from - sun exposure. This includes regularly using sunscreen with sun protection factor (SPF) of 15 or more, wearing protec tive clothing, avoiding outdoor activities from 10 am to 2 pm when the sun’s rays are most intense, and not tanning. . Heavy drinkers, especially those who use tobacco, have a high risk of cancer of Drink alcohol only in moderation the mouth, throat, and esophagus. The risk of breast cancer may be increased in women who drink alcohol. Limiting the use of alcohol can reduce these cancer risks and decrease the chances of other alcohol-related problems, such as liver disease. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Reducing Risk of Cancers | Version 4.0 | 10/13 Page 2 of 4

134 Health Link Healthy living after treatment of childhood cancer . A high intake of dietary fat has been linked to the risk of several common adult cancers. People who eat Eat right high-fat diets have a greater risk of getting colon cancer; this may also be true for breast and prostate cancers. High- fat diets are also associated with obesity, heart disease, and other health problems. To reduce all of these risks, daily fat intake should be limited to 30% or less of your total calories. Dietary fiber is found in whole grains, several types of vegetables, and certain fruits. Fiber reduces the time it takes for wastes to pass through the intestinal tract. High-fiber foods also tend to be low in fat. Eating cruciferous vegetables also helps reduce cancer risk. Cruciferous vegetables include cabbage, brussel sprouts, - broccoli, and cauliflower. Eating these vegetables is thought to protect against cancer by blocking the effects of can cer-causing chemicals in other foods. Cruciferous vegetables are also high in fiber and low in fat. These foods should be included frequently in the diet. Some chemicals used to preserve foods are cancer-promoting (carcinogenic) in large quantities. Diets high in salt- cured and pickled foods and lunchmeats that contain preservatives like nitrites can increase the risk of cancer in the stomach and esophagus. Some of these foods, especially lunchmeats, are also high in fat. Foods of this kind should be eaten rarely and in small portions. Diets rich in vitamins C and A have been shown to reduce cancer risk in animal studies. People whose diets are rich in vitamin C appear less likely to get cancer, especially cancer of the stomach and esophagus. The best way to get these nutrients is to eat lots of fresh fruits and vegetables. Citrus fruits, melons, cruciferous vegetables, and greens are high in vitamin C. Good sources of vitamin A are dark green and deep yellow vegetables and certain fruits. If your diet is low in vitamins, a vitamin supplement may help, but avoid extra high doses, since these can cause serious side effects. . Certain cancers are associated with preventable infections. Two of the most common are hepatitis B Get vaccinated and human papillomavirus (HPV). Vaccines are now available to protect against these cancer-causing viruses. Check with your health care provider to determine if either of these vaccines is recommended for you. Start today by taking time to review your health habits, and practice healthy behaviors that will help keep your risk of second cancers to a minimum. Written by Melissa M. Hudson, MD; and Allison Hester, RN, MSN, CPNP, Arkansas Children’s Hospital, Little Rock, AR. Portions adapted from CCSS Newsletter , Fall 1999 and Winter 2001, used with permission. ® Reviewed by Smita Bhatia, MD, MPH; Debra Friedman, MD; Fran Wiley, RN, MN; and Jill Meredith RN, BSN, OCN . Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Throughout this Note: Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Reducing Risk of Cancers | Version 4.0 | 10/13 Page 3 of 4

135 Health Link Healthy living after treatment of childhood cancer criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Reducing Risk of Cancers | Version 4.0 | Page 4 of 4 10/13

136 Health Link Healthy living after treatment of childhood cancer Scoliosis and Kyphosis after Treatment for Childhood Cancer The spine, or “backbone” is actually a group of bones stacked in a straight line down the middle of the back, held together with muscles and ligaments. Treatment for childhood cancer can sometimes result in abnormal curvatures of the spine, known as scoliosis and kyphosis. What is scoliosis? Scoliosis is a sideways rotation of the spine. Instead of appearing as a straight line when viewed from the back, the spine appears curved, like the letter “S” or the letter “C.” Signs of scoliosis may include: Uneven shoulder blades • • Uneven hips • Uneven waist • “Leaning” of the back to one side Head not centered above pelvis • • One leg longer than the other What is kyphosis? Kyphosis is an abnormal rounding of the upper part of the back. Kyphosis Scoliosis When viewed from the side, it may appear as if the person is slouching or has a “hump” on the back. What causes scoliosis? Scoliosis occurs in many young people, especially teenagers, and is most often “idiopathic,” meaning that the cause is not known. However, people who underwent surgery to the spine or chest, or those who received radiation to the chest, abdomen, or spine, especially when combined, especially when combined with surgery, are at increased risk for uneven development of the muscles, bones, and soft tissues of the back, resulting in scoliosis. What are the risk factors for scoliosis after treatment for childhood cancer? People at risk include those who had: • Surgery to the spine or chest (not including placement of a central line) • Radiation to the trunk (including any area from the shoulders down to the pelvis), especially if: – The dose was 20 Gy (2000 cGy/rads) or higher. – The radiation treatment area was to one half of the chest or abdomen. – There was also surgery to the chest, abdomen, or spine. • A tumor in or near the spine | Version 4.0 | Scoliosis and Kyphosis | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13 Page 1 of 3

137 Health Link Healthy living after treatment of childhood cancer What causes kyphosis? Kyphosis sometimes develops from stretching of the spinal ligaments, causing the natural curve of the spine to increase. Kyphosis can also be caused by uneven development of the back muscles and ligaments as a result of radiation. What are the risk factors for kyphosis after treatment for childhood cancer? People at risk include those who had: • Surgery to the spine, chest, or upper abdomen (not including placement of a central line) Radiation to the chest or upper abdomen, especially in doses of 20 Gy (2000 cGy/rads) or higher • • A tumor in or near the spine How is the diagnosis made? Signs of scoliosis or kyphosis may be detected on physical examination. X-rays of the spine confirm the diagnosis. Scoliosis is diagnosed when there is at least a 10-degree lateral (side-to-side) curve on the x-ray. Kyphosis is diag - nosed when there is at least a 50-degree curve on the x-ray. What treatment is needed? Treatment for kyphosis and scoliosis is usually done in stages. The first stage is usually “observation.” During this stage, the curve is closely monitored, especially during periods of rapid growth, such as during puberty. If the curve does not get worse, observation may be all that is necessary. If the curve progresses, the next step is usually bracing (a plastic body brace worn under the clothing). The goal of bracing is to halt progression or help correct the abnormal spinal curvature. The final treatment step is surgery. This is done in cases of serious curves that are not manageable with observation or bracing alone. What monitoring is required? If scoliosis or kyphosis is suspected, an x-ray of the spine should be obtained. If the curve is more than 10 degrees for scoliosis or more than 50 degrees for kyphosis, a referral is usually made to an orthopedic (bone) specialist. ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Written by Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Melissa M. Hudson, MD; Debra Friedman, MD; Smita Bhatia MD, MPH; Louis S. Constine, MD; and Johanne Soucy, RN, BScN Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Health Links Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Scoliosis and Kyphosis | Version 4.0 | 10/13 Page 2 of 3

138 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: and accompanying Health The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Scoliosis and Kyphosis | Version 4.0 | 10/13 Page 3 of 3

139 Health Link Healthy living after treatment of childhood cancer Keeping Your Single Kidney Healthy The kidneys are vital organs responsible for filtering out waste products from the blood, controlling blood pressure, and stimulating red blood cell production. Treatment for childhood cancer sometimes requires removal of one kidney (nephrectomy). Although you can live a healthy life with only one kidney, it is important that you take steps to protect your remaining kidney in order to keep it as healthy as possible. What follow up is recommended? . This should include a blood pressure check and urinalysis. Have a medical check-up at least yearly • • Have a blood test for kidney function (BUN, creatinine) and electrolytes (blood salts and minerals) at (at least 2 years after completing cancer treatment). If problems are your first long-term follow-up visit detected, follow your health care provider’s recommendations. If you have high blood pressure, protein in the urine, or other signs of worsening kidney problems, you should • (kidney specialist). evaluation by a nephrologist have an What can I do to keep my kidney healthy? , especially when playing sports, while out in the sun, and during hot weather. Drink plenty of water • • (burning Call your healthcare provider immediately if you have symptoms of a urinary tract infection when you urinate, urinating more frequently than usual, and/or feeling an urgent sensation to urinate). (prescription, over- Check with your healthcare provider or pharmacist before taking any new medicines • the-counter, or herbal). Be sure that your healthcare provider or pharmacist is aware that you have a single kidney. • Use non-steroidal anti-inflammatory drugs with caution . These include pain or fever medicines (over-the- counter and by prescription) that contain aspirin, ibuprofen, acetaminophen or naproxen. These medications have been known to cause kidney damage (analgesic nephropathy), especially when taken in excessive doses or when two or more of these medications are combined with caffeine or codeine and taken over long periods of time. If you require long-term medications for management of pain, be sure to discuss the alternatives with your healthcare provider, and to choose medications that are not harmful to your kidney. • . Kidney injuries from sports are uncommon, and Physical activity, including sports, is good for your health those that do occur rarely cause permanent damage or kidney loss. Overall, most physical activity poses little or no risk to the kidney and is strongly encouraged to maintain good general health. Talk with your health care provider about your kidney health to help you decide whether to participate in certain sports. . When they do occur, they are most commonly caused by car accidents, Serious kidney injuries are rare • all-terrain vehicles, and falls. To protect your single kidney, always wear your seatbelt properly when riding in a vehicle. Lap belts should be worn across the hips, not around the waist. If you are involved in an accident and a kidney injury is suspected, seek medical attention right away Are there any other risk factors for kidney problems? Certain treatments for childhood cancer can sometimes cause kidney problems. These include radiation to the kidney, - chemotherapy that can affect the kidney (cisplatin, carboplatin, methotrexate and/or ifosfamide), or other medica tions that can affect the kidney (certain antibiotics or medications used for treatment of graft-versushost disease). In addition, other risk factors that may increase the chance of kidney problems include medical conditions, such as high blood pressure or diabetes, urinary tract problems such as frequent urinary infections or back-flow of urine into the | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Single Kidney Health | Version 4.0 | 10/13 Page 1 of 2

140 Health Link Healthy living after treatment of childhood cancer kidney (reflux), or bladder removal (cystectomy). If you have any of these risk factors, please read the related Health Link, “Kidney Health.” ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, California. Written by Wendy Landier, RN, PhD, CPNP, CPON Revised by Maki Okada, CPNP, FNP-BC, CPON®, LIFE Program, Children’s Center for Cancer and Blood Diseases, Children’s Hospital Los Angeles, 2013. Reviewed by Smita Bhatia, MD, MPH; Daniel Green, MD; Rebecca L. Pentz, PhD; Melissa M. Hudson, MD; Kevin Oeffinger, MD; Michael L. Ritchey, MD; and Josee Pacifico RN, BSc (N). Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links Note: series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Throughout this or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Single Kidney Health | Version 4.0 | 10/13 Page 2 of 2

141 Health Link Healthy living after treatment of childhood cancer Skin Health after Childhood Cancer Very few people realize that the skin is the largest organ in the body. The skin is the body’s first line of defense against outside invaders. It also keeps the body temperature normal and stores water, fat and vitamin D. Such an important organ requires care and monitoring. Treatment for childhood cancer sometimes causes damage to the skin. Who is at risk? Survivors who received radiation to any part of the body, including total body irradiation (TBI). • • Survivors with chronic graft-versus-host disease (GVHD) following bone marrow or stem cell transplant. What problems can occur? The following are possible long-term skin effects that may be seen after cancer therapy. Telangiectasias These small blood vessels on the surface of the skin are commonly referred to as “spider veins,” and in the cancer survivor they can occur in the field of radiation. Telangiectasias are caused by changes to the lining of blood vessels resulting from radiation. These do not typically cause any health problems and require no specific care. Fibrosis Fibrosis is caused by scarring of the lining of blood vessels, resulting in a “woody” skin texture. The skin may not be as flexible in the fibrotic area and may be more easily injured. Care of fibrotic skin should include routine moisturizing and avoidance of trauma. Because the blood supply is not as good in fibrotic skin, healing may be slow after cuts and scrapes, so avoiding these when at all possible is important. Scleroderma People who have chronic GVHD following bone marrow or stem cell transplant sometimes develop scleroderma. In this condition, the donor white blood cells do not recognize the patient’s skin cells as their own, and begin to attack them. This causes the skin to become stiff and inflexible. This may happen anywhere on the body, but if it happens to the skin around joints, it can make the joints less mobile. The therapy for scleroderma is treatment of the underlying GVHD. It is also important to avoid injury to this skin, since healing time will be prolonged. Vitiligo Vitiligo is loss of pigment on patches of the skin. This can occur after bone marrow or stem cell transplant from a person other than yourself (allogeneic transplant) and may be due to GVHD or other autoimmune reactions seen after transplant. In this situation, the white blood cells do not recognize certain normal skin cells (melanocytes) and so they attack and destroy them. Melanoctyes are the cells in the body that control skin color. Without melanocytes, the skin has a milky white appearance. Vitiligo usually occurs only in patches. The therapy for vitiligo is treatment of the - underlying GVHD or autoimmune process. Even if this therapy is successful, the color may not return to the skin be cause the damage to the melanocytes may be permanent. While all skin should be protected from sun, skin that has lost its pigment is very vulnerable, and sunscreen should always be applied to these areas before going outdoors. Hyperpigmentation Hyperpigmentation is a darkening of the skin that may occur after radiation or some types of chemotherapy. The chemotherapy agents most commonly associated with hyperpigmenation include bleomycin, busulfan, cyclophospha - mide, dactinomycin, 5-flourouracil, hydroxyurea and methotrexate. The dark discoloration can occur on the skin or | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Skin Health | Version 4.0 | 10/13 Page 1 of 4

142 Health Link Healthy living after treatment of childhood cancer nails. There is no specific treatment for hyperpigmentation associated with cancer therapy, but it usually continues to fade over time without any treatment. Skin Cancers People who have received radiation are at risk for developing skin cancers, usually in the radiation field. Other risk factors include light skin color, chronic sun exposure, severe sunburn, atypical moles or a large number of moles on the body, and a family history of skin cancer. The good news about skin cancer is that if it is diagnosed early, it is usually very treatable. There are three major forms of skin cancer: (BCC) is the most frequent form of skin cancer. BCC usually appears as a rough, raised, Basal cell carcinoma • - area of skin. As the BCC progresses, it may become an ulcer or sore that does not heal. BCC can occur any where on the skin, but is seen most frequently in areas of sun and/or radiation exposure. Protecting your skin from the sun is the most important thing you can do to avoid developing BCC. Treatment for BCC is surgical removal of the affected skin. BCC can spread to surrounding tissues but does not usually spread throughout the body and is not usually life threatening. Squamous cell carcinoma • (SCC) is another form of skin cancer that can develop from exposure to sun or radiation. Its appearance is similar to BCC, usually an ulcerated sore that does not heal. SCC can be more aggressive than BCC and can spread more readily to surrounding tissues and even to other parts of the body. With early surgical treatment SCC is usually curable, so it is important to report any suspicious sores to your healthcare provider right away. is a much more serious form of skin cancer. Unlike BCC, left untreated it can spread to other organs Melanoma • and can be lethal. Melanoma often arises from moles. The key to successful treatment of melanoma is early diagnosis. Moles should be monitored for changes. Monitoring of moles can be remembered using the “ABCD” warning signs: A is for Asymmetry (one half of the mole looks different than the other half) (moles that have an irregular, scalloped or poorly defined border) B is for Border C is for Color (variations in color from one area of the mole to another, such as different shades of tan and brown or black, or colors such as white, red or blue within a mole) D is for Diameter (moles larger than 6 millimeters – about the diameter of a pencil eraser – should be evaluat - ed). If you notice any of the “ABCD” warning signs, have your healthcare provider check the mole. Moles that have any of these warning signs usually need to be removed. What monitoring is needed? If you have any of the following risk factors, you should check your skin monthly for changes, and have a : thorough skin examination by a healthcare provider at least once a year You received radiation to any area, including total body irradiation (TBI) • You have ever had skin cancer or melanoma, or you have a family history of skin cancer or melanoma • • You have “dysplastic” (atypical) moles • You had a severe sunburn at a young age | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Skin Health | Version 4.0 | 10/13 Page 2 of 4

143 Health Link Healthy living after treatment of childhood cancer What can I do to keep my skin healthy? The most important thing to remember in caring for your skin is to protect it from the sun. Here are some things you can do: Wear protective clothing or sunscreen at all times when your skin is exposed to the sun, even on cloudy or • hazy days. The American Cancer Society recommends a sunscreen with an SPF (sun protection factor) of 15 or higher. Sand, snow, concrete, water and high altitudes all increase the risk of sun damage—take extra caution to • protect your skin in these environments. • Do not attempt to tan your skin—avoid tanning booths. - • Avoid outdoor activities from 10 am to 2 pm when the sun’s rays are most intense (11 am to 3 pm during day light savings time). Plan outdoor activities in the early morning or late afternoon hours. • Reapply sunscreen frequently or use a water resistant sunscreen when swimming or perspiring heavily. This will not only help to protect you from developing skin problems, but will also help you to maintain a youthful appearance. If you have any questions or concerns about your skin, contact your healthcare provider. Take good care of your skin and it will take care of you! ® , Long Term Follow-up Program, Johns Hopkins University, Baltimore, MD. Written by Kathy Ruble, RN, PhD, CPNP, AOCN ® ; and Debra Reviewed by Julie Blatt, MD; Louis S. Constine, MD; Rebecca D. Pentz, PhD; Wendy Landier, RN, PhD, CPNP, CPON Friedman MD. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links Note: Throughout this series, the term “childhood cancer” is used to desi gnate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: Health and accompanying Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: - by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Skin Health | Version 4.0 | 10/13 Page 3 of 4

144 Health Link Healthy living after treatment of childhood cancer The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Version 4.0 | Page 4 of 4 | Skin Health Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. 10/13

145 Health Link Healthy living after treatment of childhood cancer Precautions for People Without a Functioning Spleen What is the spleen? The spleen is an organ located in the upper left side of the abdomen, tucked under the rib cage, behind the stomach. It is normally about the size of a person’s fist. The spleen produc- es antibodies and filters bacteria from the blood. This helps the body to fight infections. What are the risk factors for a non-functioning spleen? Surgical removal of the spleen (splenectomy) • • High dose of radiation (at least 40 Gy/4000 cGy) to the spleen Curretly active chronic graft-versus-host disease (cGVHD) (occuring following bone • marrow or stem cell transplant). What problems can occur in people with a non-functioning spleen? People without a spleen or those who have a spleen that is non-functioning are at increased risk for developing serious infections. These infections can be fatal if not treated immedi- ately. The types of infections most likely to occur in people without a functioning spleen are those caused by encapsulated bacteria (germs with an outer coating that protect them from the body’s immune system). Some common types of encapsulated bacteria include Strepto- , and Haemophilus influenzae , coccus pneumoniae . Neisseria meningitidis What are the signs of infection? Fever is a sign of infection. Often, fever is caused by a virus (like the flu) and not by dangerous bacteria. However, there is no way to know if bacteria are the cause of a fever unless a blood culture is done (by taking a blood sample and testing it for the presence of bacteria). Unfortunately, it takes anywhere from a few hours to a few days for the Therefore, whenever you have a fever you must be treated with antibi- blood culture results to become available. otics as if you had a serious infection , at least until the blood culture results are known. Other symptoms of infection include unusual tiredness, muscle aches, chills, headache, vomiting, diarrhea, and abdominal pain. These symptoms can be warning signs of infection even if you do not have a fever. Check with your healthcare provider if you develop these symptoms. Take your temperature regularly any time that you develop symp- toms of illness. If you are having symptoms that you are not sure are related to an infection, contact your healthcare provider for further recommendations. What should I do if I get a fever? : 101ºF (38.3ºC) or higher you should If your temperature is immediate . Seek • medical attention (even if you are taking antibiotics) . • Tell your healthcare provider that you do not have a functioning spleen Report any symptoms that you are experiencing (such as those listed above). • • for blood count and culture. Have a blood sample taken Receive a strong antibiotic • (by injection into a vein or muscle), at least until the blood culture results are available. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Splenic Precautions | Version 4.0 | 10/13 Page 1 of 4

146 Health Link Healthy living after treatment of childhood cancer Is there anything I can do to prevent infections? We recommend that you receive the pneumo- : Vaccines may reduce your chances of a serious infection. Vaccines type B) vaccines. Check with your healthcare provider to Haemophilus influenzae ( coccal, meningococcal, and HIB see whether you have had all of these vaccines and whether you need booster doses (additional doses given after the original vaccine). Everyone should have a booster dose of pneumococcal vaccine, which should be given at least 5 years after the first shot. Additionally, there are now two types of pneumococcal vaccine (conjugate and polysaccha- ride), and the combination of both provides improved protection over either vaccine alone. Check with your healthcare provider to see if you have had both types, and if not, schedule an appointment to catch-up on any doses you are , in order to reduce the risk Many healthcare providers also recommend yearly influenza (flu) vaccine missing. even if of bacterial infections that can sometimes occur as a complication of the flu. It’s also important to know that you have received vaccines, you are still at risk for infection, because vaccination is not 100% protective . : Some healthcare providers may recommend that you take daily preventive (prophylactic) antibiotic pills, Antibiotics such as penicillin, with the hope of preventing serious bacterial infections. Others may give you a prescription to have on hand and instruct you to start taking antibiotics at the first sign of illness. Still others may recommend a prescrip- In any case, tion for antibiotics only if you are traveling to an area where it will be difficult to obtain medical care. whether or not you are taking antibiotics, it is essential that you seek immediate medical attention any time . Delaying a medical visit for even a few hours that you develop fever, chills, or other symptoms of serious illness can be very dangerous for you, because if you do have a bacterial infection, it can worsen rapidly. Other precautions Because you do not have a functioning spleen, you are also at increased risk for problems with the following infec- tions: Malaria : If you travel to countries where malaria is common, take special precautions to avoid getting malaria. Ask your healthcare provider for anti-malarial medications before you travel to infested areas. During travel, use insect repellants and other protective measures, such as netting and protective clothing. : Animal and human bites can result in serious bacterial infections. If you receive a bite that Animal/Human Bites breaks the skin, you should seek immediate medical attention for treatment with antibiotics. Ticks , a germ trans- : People without a functioning spleen are at increased risk for an infection caused by Babesia mitted by deer ticks. These ticks are most commonly found in the northeastern United States and in some European the type of germ that causes Lyme disease). You should wear protective clothing and use not countries. (Note: this is insect repellants when going outdoors in tick-infested areas. If you receive a tick bite while in an area infested with Babesia , you should remove the tick and talk to your healthcare provider about what to do. How will my healthcare providers know about my non-functioning spleen? Be sure to tell all of your doctors, dentists, and other healthcare providers that you do not have a functioning spleen. (bracelet or necklace) so that in case you are unable to communicate wear a medical alert emblem You should also in a medical emergency, you will be readily identified as not having a functioning spleen. We also recommend that you carry a wallet card, such as the one below, with guidelines for healthcare professionals regarding the management of fever in people without a functioning spleen. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Splenic Precautions | Version 4.0 | 10/13 Page 2 of 4

147 Health Link Healthy living after treatment of childhood cancer Wallet Card for Patients Without a Functioning Spleen Physician Phone: ____________________________ Physician Name: ____________________________ Patient Name: ______________________________ Asplenic Patient MEDICAL ALERT Fold here MEDICAL ALERT: Asplenic Patient This patient is asplenic and at risk for potentially fatal, overwhelming infec- tions. Immediate medical attention is required for fever of ≥ 101°F (38.3°C) or other signs of serious illness. Suggested management includes: 1. Physical exam, CBC and blood culture. 2. Administration of a long-acting, broad-spectrum parenteral antibiotic (e.g., ceftriaxone) accompanied by close clinical monitoring while await- ing blood culture results. 3. Hospitalization and broadening of antimicrobial coverage (e.g., addition of vancomycin) may be necessary under certain circumstances, such as the presence of marked leukocytosis, neutropenia, or significant change from baseline CBC; toxic clinical appearance; fever ≥ 104°F; meningitis, pneumonia, or other serious focus of infection; signs of septic shock; or previous history of serious infection. Written by Teresa Sweeney, RN, MSN, CPNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA Memphis, TN and Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Smita Bhatia, MD, MPH; Julie Blatt, MD; Melissa M. Hudson, MD; Kevin Oeffinger, MD; Lise Yasui; Wendy Landier, ® ® ; Lisa Bashore, PhD, RN, CPNP, CPON and the COG Late Effects Committee.. RN, PhD, CPNP, CPON Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. | 10/13 | Version 4.0 | Page 3 of 4 Splenic Precautions Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide.

148 Health Link Healthy living after treatment of childhood cancer Disclaimer and Notice of Proprietary Rights The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, No Claim to Accuracy or Completeness: no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group Proprietary Rights: retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Splenic Precautions | Version 4.0 | 10/13 Page 4 of 4

149 Health Link Healthy living after treatment of childhood cancer Thyroid Problems after Childhood Cancer Some people who were treated for cancer during childhood may develop endocrine (hormone) problems as a result of changes in the function of a complex system of glands known as the endocrine system. y gland Pituitar What is the endocrine system? Hypothalamus The endocrine system is a group of glands that regulate many body functions including Thyroid growth, puberty, energy level, urine production, and stress response. Glands of the endocrine system include the pituitary, hypothalamus, thyroid, adrenals, pancreas, ovaries (in fe- Pancreas males), and testes (in males). The hypothal- amus and pituitary are sometimes called the Adrenal glands “master glands” because they control many of the other the endocrine system. Unfortunately, Ovaries some treatments given for childhood cancer can damage the endocrine system, resulting in a variety of problems. Testes What are hormones? Hormones are chemical messengers that carry information from the endocrine glands through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) that work together to main- tain specific bodily functions. What is the thyroid gland? The thyroid gland is located in the lower part of the neck in front of the windpipe. The Pituitar y gland gland makes two hormones, thyroxine (T4) and triiodothyronine (T3), that play an im- portant role in growth and mental development, and help to regulate the body’s metab- TSH olism. The thyroid gland is controlled by the pituitary, a gland in the brain that makes Thyroid thyroid stimulating hormone (TSH). TSH is released from the pituitary in response to the levels of T4 and T3 in the blood. If the levels are low, the pituitary makes more TSH to T3 and T4 signal the thyroid to increase the production of thyroid hormones. If T4 and T3 are high, the pituitary makes less TSH to signal the thyroid gland to slow down production. The possible late effects Damage to the thyroid gland after childhood cancer is usually the result of radiation to the head, brain or neck. This damage is usually very easy to treat, although it may not show up for years after treatment. Regular check-ups may help find thyroid problems early so that the proper treatment can be started. Several different types of thyroid problems may develop including an underactive thyroid (hypothyroidism), overactive thyroid (hyperthyroidism), and growths on the thyroid that may be benign (nodules) or malignant (cancer). Surgical removal of the thyroid gland (thyroidectomy), radioiodine treatments (I-131 thyroid ablation), and high doses of MIBG (sometimes used in the treatment of neuroblastoma) may also result in low or absent levels of thyroid hormone, depending on the amount of thyroid tissue removed or destroyed. | Thyroid Problems Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. | 10/13 | Version 4.0 Page 1 of 5

150 Health Link Healthy living after treatment of childhood cancer Hypothyroidism occurs when the thyroid gland is not active enough. This is the most common thyroid problem seen in childhood cancer survivors. When the thyroid gland is underactive, thyroid hormone levels are low and the body’s metabolism slows down. There are three different types of hypothyroidism seen in childhood cancer survivors: • is caused by direct damage to (or surgical removal of) the thyroid gland. Blood tests Primary hypothyroidism in people with primary hypothyroidism show a high TSH because the pituitary gland is responding to the lower than normal levels of T3 and T4 produced by the damaged thyroid gland. Central hypothyroidism • is caused by damage to the hypothalamus or pituitary gland in the brain. Blood tests in people with central hypothyroidism show low TSH, T3 and T4 levels because the pituitary gland does not produce enough occurs when the pituitary gland has to overwork the thyroid gland to keep the Compensated hypothyroidism • level of thyroid hormones normal in the blood. This may be a temporary problem after radiation, or it may be a sign that the thyroid gland is beginning to fail. Blood tests in people with compensated hypothyroidism show higher than normal TSH levels and normal T3 and T4 levels. Some survivors with compensated hypothyroidism may be treated with thyroid hormone in order to decrease the workload on the thyroid gland. may include: Signs and symptoms of hypothyroidism Delayed onset of puberty • Feeling tired and listless • • Hoarse voice Puffiness of the face and hands • • • Problems concentrating Weight gain Dry skin Feeling sad/depressed • • • Mood changes Brittle hair • • Muscle and joint aches • Constipation Weakness • Slowing of the heart rate • • • Feeling cold all of the time Low blood pressure • High cholesterol level Puffiness around the eyes • • Slowing of normal growth • Poor exercise tolerance Hyperthyroidism occurs when the thyroid gland is too active. In this condition thyroid hormone levels are high and the body’s metabolism speeds up. may include: Signs and symptoms of hyperthyroidism • Jitteriness Feeling hot all of the time • Anxiety • • Diarrhea • • Problems concentrating Weight loss Irregular menstrual periods • Feeling tired • • Bulging or protruding eyes • Muscle weakness • Tremors • Neck tenderness and swelling Poor exercise tolerance • Fast or irregular heartbeat • Increased sweating • | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Thyroid Problems Page 2 of 5 | Version 4.0 | 10/13

151 Health Link Healthy living after treatment of childhood cancer are growths that may occur many years after radiation to the thyroid gland. Thyroid nodules and thyroid cancer Both usually begin as slow-growing, painless lumps in the neck. Most thyroid growths do not usually cause any symptoms. Who is at risk for thyroid problems? People who received radiation that may have affected the thyroid gland directly are at risk for primary hypothyroid- ism, compensated hypothyroidism, thyroid nodules, and/or thyroid cancer. People who received radiation to the thy- roid gland in high doses (at least 40 Gy or 4000 cGy/rads) are also at risk for hyperthyroidism. The following radiation fields have the potential to affect the thyroid gland directly: • Head/brain (cranial) • Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal) • Neck (cervical, supraclavicular, mantle, or mini-mantle) Upper chest (whole lung, mediastinum) • • Spine (cervical/neck portion) • Total body irradiation (TBI) In addition, people who received radioiodine therapy (I-131), high doses of MIBG, or had their thyroid gland surgically removed (thyroidectomy) are also at risk for primary hypothyroidism. People who received radiation that may have affected the pituitary gland in the brain are at risk for central hypothy- roidism. Radiation in high doses (at least 40 Gy or 4000 cGy/rads) to the following fields have the potential to affect the pituitary gland: Head/brain (cranial) • Eye/orbit • • Ear/infratemporal region (midfacial area behind the cheekbones) Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal) • Other factors that have been shown to increase the risk of thyroid problems after childhood cancer include being: Female • Treated with higher radiation doses • • Treated at a young age Thyroid problems may occur soon after radiation, but generally do not occur until several years later. If treated promptly, thyroid problems are easily managed. What follow up is needed for those at risk? Since thyroid problems may occur many years after cancer treatment, a yearly checkup is recommended for survi- vors who are at risk of developing thyroid problems. This check-up should include evaluation of growth in children and teens, examination of the thyroid gland, and a blood test to measure the levels of TSH and T4. During periods of rapid growth, healthcare providers may recommend more frequent monitoring of thyroid levels. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Thyroid Problems | Version 4.0 | 10/13 Page 3 of 5

152 Health Link Healthy living after treatment of childhood cancer Female survivors at risk for thyroid problems who are planning to become pregnant should have their thyroid levels checked before attempting pregnancy. It is important to do this before becoming pregnant, because mothers with thyroid disease have a higher chance of having babies with developmental problems. It is also important to monitor thyroid levels periodically during pregnancy. How are thyroid problems treated? If problems with thyroid levels are identified, you may be referred to an endocrinologist (hormone specialist) for continuing treatment. If a lump is detected on the thyroid, you may be referred to a surgeon or other specialist for evaluation and management. All types of hypothyroidism are treated with daily thyroid pills. Treatment is usually for life. In some cases of compen- sated hypothyroidism, treatment may be stopped if the thyroid gland begins to work normally. Hyperthyroidism may be treated in several ways. Sometimes medication is given on a temporary basis to prevent thyroid hormone production. Thyroid ablation (destroying the hormone-producing cells in the gland by drinking a radioactive liquid iodine called I-131) may be done. Surgery to remove the thyroid gland is another treatment. Your healthcare provider will determine which treatment option is the best choice for you. Treatment for hyperthyroidism may result in hypothyroidism, which is then treated with a daily thyroid pill. Thyroid nodules. Thyroid growths need additional testing. This is generally done with an ultrasound (picture made us- ing sound waves) and biopsy (sampling the thyroid tissue to check for cancer cells). Surgery may be done to remove enlarging nodules because of the concern about thyroid cancer. Thyroid cancer. Treatment for thyroid cancer involves surgery to remove the cancer and as much additional normal thyroid tissue as the surgeon feels is necessary. After surgery, additional treatment with radioactive iodine (I-131) may be needed to destroy any remaining thyroid tissue. After treatment for thyroid cancer, most individuals will need to take daily thyroid pills. Written by Melissa M. Hudson, MD, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA and Wendy Landier, RN, PhD, CPNP, CPON Reviewed by Charles Sklar, MD; Debra L. Friedman, MD, Julie Blatt, MD; Joan Darling PhD; and Susan Shaw, RN, MS, PNP. Additional health information for childhood cancer survivors is available at www.survivorshipguidelines.org Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, Throughout this Note: or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Health and accompanying The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines and Health Links: were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Links Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a To cancer patients (if children, their parents or legal guardians): medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment. The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate To physicians and other healthcare providers: criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. | Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Thyroid Problems | Version 4.0 | 10/13 Page 4 of 5

153 Health Link Healthy living after treatment of childhood cancer No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group. No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No liability is assumed No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemni- fication: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. Version 4.0 Copyright 2013 © Children’s Oncology Group. All rights reserved worldwide. Thyroid Problems Page 5 of 5 | 10/13 | |

154 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Manteniéndose Saludable a través de su Dieta y Actividades Físicas - La buena nutrición y el ejercicio regular ofrece muchos beneficios a los sobrevivientes del cáncer infantil. Éstos ben eficios incluyen: • Promoviendo Curas de órganos y tejidos que han sido dañados por el cáncer y su tratamiento El desarrollo de fuerza y resistencia • Disminución de riesgo de ciertos tipos de canceres de adultos y otras enfermedades • Disminución del estrés y desarrollo de un bien estar • El Impacto del Cáncer Infantil en la Nutrición y Actividad Física Los efectos de cáncer de niño en la nutrición y actividad física van a ser diferentes para cada sobreviviente de cánc - er. El cáncer afecta la nutrición en varias formas. Unos sobrevivientes pueden encontrar que el aumento de peso es difícil, mientras otros tienen problemas por el aumento de mucho peso. La actividad física es un factor importante en el mantenimiento de un peso saludable. Hay muchos factores que pueden influenciar la habilidad de ser activo físicamente de un sobreviviente; sin embargo, el cáncer infantil y su tratamiento no debe de ser excusa para no tener una dieta saludable o mantenerse activo físicamente. Muchos sobrevivientes, como muchas personas que nunca han tenido cáncer, tienen pobres hábitos de salud. Ahora es un buen tiempo para empezar hacer decisiones saludables sobre su dieta y ejercicio. Estas decisiones pueden tener un efecto positivo en su salud por muchos años. El Desarrollo de un Plan de Nutrición Saludable Sugerencias para una dieta saludable incluyen: Escoja una variedad de comidas de todos los grupos de comida. Utilice la • www.choosemyplate.gov/en-espanol. guía personalizada interactiva en para ayuda de cómo desarrollar una dieta balanceada y plan de activ html - idad. • Coma cinco o más porciones de frutas o vegetales, incluyendo frutas cítricas y vegetales de color amarillo intenso o verde oscuro. Cuando tome jugo, escoja uno de 100% fruta o jugo de vegetales, y tenga • un límite de 4 onzas por día. • Consuma comidas con mucha fibra, como panes de grano, arroz, pasta, y cereales. Tenga un límite de carbohidratos refinados, incluyendo pan dulce, cereales azucarados, sodas o azúcar. • Reduzca la cantidad de grasa en sus comidas; cosa al horno, ase a la parilla, o hierba sus comidas. • Limite la cantidad de carne roja que come y substitúyela por pescado, pollo, o fríjol. Cuando coma carne roja • seleccione porciones chicas y magras. • Limite comidas con mucha grasa y fritas, como papitas fritas, papitas, hamburguesas, y pizza. • Escoja productos lácteos, y leche bajo en grasa. Evita comidas con sal, ahumadas, a la parilla, y encurtidas. • • Adultos deben de limitar su consumo de bebidas alcohólicas menos de dos al día para hombres y uno al día para mujeres. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Diet and Physical Activity | Version 4.0 | 10/13 Página 1 de 4

155 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil , consulte con sus proveedores de cuidado de salud y un nutricionista para desarrollar un Si necesita perder peso plan de nutrición. El uso de suplementos herbales o dietéticos deben de ser discutidos para determinar si realmente son saludables. Hay varias preguntas que se debe hacer para asegurarse que su plan de nutrición va ser efectivo. ¿Tiene una meta realista y alcanzable para su peso? • ¿Su plan incluye comidas que va disfrutar comer por el resto de su vida, no nada mas unas semanas o meses? • • ¿Su plan incluye una variedad de comidas? • ¿Las comidas en su plan están disponibles en su supermercado? ¿Su plan queda bien con su estilo de vida y su presupuesto? • • ¿Su plan incluye cambios de vida que le ayudaran a mantener su perdida de peso? Desarrollando un Plan Saludable de Ejercicio Revise con su equipo de cuidado medico antes de empezar un plan de ejercicio o empezar un nuevo deporte o una nueva actividad recreacional. Su proveedor de cuidado de salud le puede informar de las actividades que puede hacer y cuales debe de evitar. Cuando escoja un plan de ejercicio, hágase estas preguntas: ¿Tiene metas razonables basadas en su fuerza y capacidad de resistencia? • ¿No hay riesgos en hacer la actividad? • • ¿Este plan va de acuerdo con su estilo de vida? • ¿La actividad requiere equipo especial o de protección y cubre su presupuesto este gasto? ¿Necesita hacer cambios en el deporte o actividad basada en una necesidad especial? • ¿Disfruta este deporte o actividad? • Aquí hay unas sugerencias que le pueden ayudar cuando implemente su plan de ejercicio: • Empiece despacio. No haga actividades que son muy intensas o que lo pongan en riesgo de distención múscu - lo. Empiece su plan de ejercicio con ejercicios de calentamiento y termine con una actividad para enfriarse, como • estirar las piernas y movimientos lentos fáciles. Use postura correcta cuando haga ejercicio. • • Haga ejercicio hasta que este cansado, no en dolor. • Identifique los músculos que quiere reforzar y escoja ejercicios que sirven para ese músculo específico. • • Haga ejercicios alternativos para trabajar diferentes músculos y diferentes partes de su cuerpo. • Para prevenir una herida, use el equipo bien y los zapatos correctos. • Evita correr y hacer actividades aeróbicas en el suelo de concreto o asfalto. • Aumente su ejercicio por no más de 10 por ciento por semana. • El Instituto Nacional de Cáncer recomienda hacer ejercicio moderado (caminando, usar la bicicleta, jardinería, pasar la aspiradora) por lo menos 30 minutos al día casi todos los días de la semana . Si no tiene tiempo para | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Diet and Physical Activity | Version 4.0 | 10/13 Página 2 de 4

156 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil - una sesión de 30 minutos, lo puede dividir en tres sesiones diferentes de 10 minutos cada uno. La Sociedad Amer niños y adolescentes hagan 60 minutos de actividad moderada y vigorosa icana de Cáncer recomienda que . Aquí hay sugerencias para tratar de (correr, ejercicios aeróbicos, trabajo en el jardín) cinco días a la semana tener actividad física en su rutina diaria. Estacione el carro una buena distancia de su trabajo y camine esta distancia extra cada día. • Aparte 30 minutos al día para caminar • Tome las escaleras en ves del elevador • Si tiene un trabajo que requiere que este sentado, levántese y estire sus músculos cada hora y camine durante • su hora de almuerzo o descanso. Use su bicicleta para ir al trabajo o hacer recados • • Si tiene un perro, llevelo/a a caminar todos los días - Trabaje en su jardín, lave su carro, corte el sacate, pinte los muebles, limpie el garaje y haga todos los quehac • er que tiene que hacer-en ves de ver la televisión o jugar con la computadora. Vea televisión o lea el periódico mientras que esta en una bicicleta estacionaria o su maquina para correr. • Planee salidas activas con su familia, en ves de ir al cine. • Haga ejercicio con un amigo con quien se lleve bien. • Hágase parte de un equipo deportivo. • Actividad Física Para Sobrevivientes Con Necesidades Especiales Los sobrevivientes que tienen necesidades especiales pueden tomar parte en la mayoría de actividades, pero la ayuda de un terapista ocupacional o físico podria ser necesitada para adaptar la actividad para que se exitoso/a. Un - trabajador social le podrá ayudar a encontrar cobertura de aseguransa u otros recursos para equipo especial. Pro - gramas especializados para individuales con necesidades especiales, organizaciones y otros recursos están dis ponibles, con frecuencia, en su centro de cuidado de salud, en su comunidad, y en . www.ncpad.org - Adaptado por Sharon Frierdich, RN, MS, CPNP, Hematología/Onocolgía Pediátricas, Universidad del Hospital de Niños de Wiscon sin, Madison, WI, de “Permanecer Físicamente Sano, Juegando Sanamente, Juegando Bien,” Hospital de Investigación de los Niños de St. Jude, usado con el permiso. Repasado por Kevin Oeffinger, MD; Missy Layfield; Octavio Zavala; and Marcia Leonard, RN, PNP Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous . support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, Health Links A través de esta serie de “ Nota: adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Diet and Physical Activity | Version 4.0 | 10/13 Página 3 de 4

157 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Advertencia y Notificación de los Derechos de Propiedad Health Links ” y las “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers : El “ Health Links Introduccion a los Efectos a largo plazo y las ” que Children’s Oncology Group . Late Effects Committee and Nursing Discipline en colaboración con el comité de lo acompañan fueron creados y desarrollados por el relacionados con los efectos a largo Children’s Oncology Group Para propositos informativos : La información y el contenido de cada documento o series de documentos que han sido creados por el ”, ya Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ Health Link ” o con el titulo de “ sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. : Por favor busque el consejo medico o de algún otro proveedor de salud calificado A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) es una organización de dedicada Children’s Oncology Group con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo A los doctores y otros proveedores de salud para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas - razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. ente de cáncer infantil. El Children’s Oncology Group Children’s Oncology Group Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el , o cualquier otra institución o miembro de el Children’s Oncology Group . Children’s Oncology Group - Ningún reclamo en cuanto a la competencia : Aunque el ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. y sus afiliados a indemnizar. Esto protege al Children’s Oncology Group No hay obligacion o consenso de parte del : Ninguna obligación es asumida y sus afiliados Children’s Oncology Group sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni por el Children’s Oncology Group - Children’s Oncology zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda Group perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. Derechos de Propiedad : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Children’s Oncology Group retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora El Children’s Oncology Group a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el tomando alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Diet and Physical Activity | Version 4.0 | 10/13 Página 4 de 4

158 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Asuntos Educacionales Despues del Tratamiento para Cáncer de la Infancia El tratamiento contra el cáncer durante la infancia y la adolescencia puede afectar el progreso académico debido a las ausencias prolongadas o a los decrementos en niveles de energía que suceden frecuentemente durante el tratamiento. Además, algunos tipos de cáncer podrían requerir terapia para controlar o prevenir que la enfermedad se extienda al cerebro y/o a la medula espinal (el sistema nervioso central). Esta terapia puede algunas veces afectar la memoria y las habilidades de aprendizaje. Los padres y maestros deben de estar al tanto de lo problemas potenciales de educación que podrían estar relacionados al tratamiento contra el cáncer para que los niños y adolescentes en riesgo puedan ser vigilados y ayudados si es necesario. ¿Qué incrementa el riesgo de los problemas educacionales? Algunos factores que podrían poner a los niños y adolescentes en riesgo para tener dificultades de aprendizaje incluyen: Un diagnóstico de cáncer a muy temprana edad • Numerosas o prolongadas ausencias de la escuela • • Una historia de problemas de aprendizaje antes de ser diagnosticados con cáncer Tratamiento contra el cáncer que resulta en un decremento de los niveles de energía • Tratamiento contra el cáncer que afecte la audición o visión • Tratamiento contra el cáncer que resulte en incapacidades físicas • Terapia contra el cáncer que incluye tratamiento al sistema nervioso central (vea abajo) • - ¿El riesgo de que los niños o adolescentes desarrollen dificultades de aprendizaje es mayor con cier tos tipos de cáncer? - Si, los niños y adolescentes con los tipos de cáncer listados a continuación tienen mas probabilidad de haber recibi do tratamientos que pueden afectar el aprendizaje y la memoria. Ya que los tratamientos para estos tipos de cáncer pueden variar considerablemente, no todos los que han sido tratados contra estos canceres tiene un riesgo mayor. Tumores cerebrales • • Tumores en el ojo o en el oído Leucemia linfoblastica aguda (Acute Lymphoblastic Leukemia, ALL) • Linfoma no Hodgkin (Non-Hodgkin’s lymphoma, NHL) • ¿Qué tipos de tratamiento ponen a los niños y a los adolescentes en mayor riesgo para desarrollar problemas de aprendizaje y de memoria? Metotrexato - si administrado en dosis altas intravenosamente (IV) o inyectado al fluido espinal (intrathecal - IT • o intraommava - IO) • Citarabina - si administrado en dosis altas intravenosamente (IV) Cirugía al cerebro • Radiación a cualquiera de las siguientes áreas: • Cerebro (cráneo) – | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Educational Issues | Version 4.0 | 10/13 Página 1 de 5

159 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Oído/región infratemporal (área detrás de los pómulos de las mejillas) – Al cuerpo entero (TBI) – Cisplatino o carboplatino (podría afectar la audición • ¿Qué exámenes son recomendados? Cualquier persona joven que ha sido sometido a los tratamientos contra el cáncer mencionados, o que esta teniendo dificultades en la escuela, debería someterse a una evaluación especializada por un psicólogo pediátrico (exámenes neuropsicológicos) cuando entre en su seguimiento a largo plazo. Este tipo de examen medirá IQ y habilidades académicas, y otra información más detallada acerca de cómo el niño procesa y organiza información. Aun si la evaluación neuropsicológica inicial es normal, es importante que los padres y los maestros se mantengan atentos. Evaluaciones neuropsicologicas consiguientes podrían ser necesarias si el niño o adolescente empieza a - tener problemas en la escuela o desarrolla cualquiera de los problemas mencionados después. Además, frecuen temente es recomendado que los exámenes se repitan en ocasiones en que los desafíos académicos tengan más probabilidad de ocurrir, como cuando el niño empieza la escuela primaria, secundaria, preparatoria, y durante la planeación para comenzar la universidad. ¿Qué problemas de aprendizaje podrían ocurrir? - El cerebro es una estructura muy compleja que continúa creciendo y desarrollándose a través de la infancia y la ado lescencia. Algunos problemas podrían permanecer ocultos hasta años después de que la terapia ha sido completada. Las áreas problemáticas comunes incluyen: • Escritura Deletreo • • Lectura • Vocabulario Matemáticas • Concentración • Atención • Habilidad de completar las tareas a tiempo • • Memoria Procesar (habilidad de completar tareas que requieren varios pasos) • Planeación • Organización • Resolución de problemas • Habilidades sociales • ¿Qué se puede hacer para ayudar con problemas de aprendizaje? Si un problema es identificado, acomodaciones especiales o servicios pueden ser pedidos para ayudar a maximizar el - potencial del estudiante. El primer paso es usualmente hacer una cita con la escuela para desarrollar un plan espe cial de educación. Algunos ejemplos de estrategias que son útiles para los niños y los adolescentes con problemas de aprendizaje relacionados al tratamiento contra el cáncer incluyen: | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Educational Issues | Version 4.0 | 10/13 Página 2 de 5

160 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Sentarse cerca del frente del salón de clases • Minimizar la cantidad de trabajos escritos requeridos • Utilizar libros y clases pregrabadas • • Utilizar el teclado de una computadora en vez de escribir a mano • Usar una calculadora para matemáticas Modificación del formato de los exámenes (tiempo extra, exámenes orales en vez de escritos) • Asignar una persona que le ayude en el salón de clases • Ayuda extra con matemáticas, deletreo, lectura, y habilidades de organización • Acceso a un elevador • • Tiempo extra para las transiciones entre clases Dos copias de libros, una de las copias para tener en casa • ¿Qué leyes protegen los derechos de los estudiantes que han recibido tratamiento contra el cáncer infantil? - En los Estados Unidos, existen tres leyes públicas que protegen los derechos de los estudiantes con problemas edu cacionales relacionados al tratamiento contra el cáncer. Estas leyes incluyen: El Acto de Rehabilitacion de 1973 - Seccion 504 ( The Rehabilitation Act of 1973 - Section 504) Esta legislación provee acomodaciones para estudiantes que tengan “un impedimento físico o mental que limite substancialmente una o mas actividades vitales,” o a estudiantes que tienen “un record de dicho impedimento”, o The Rehabilitation Act, quienes son “percibidos que tienen dicho impedimiento” (Acto de Rehabilitacion de 1973 [ 1973 ] ). Las condiciones que califican incluyen enfermedades crónicas como el cáncer, asi como otras incapaci - dades, incluyendo problemas auditivos, problemas de visión, incapacidades de aprendizaje, problemas al hablar, e incapacidades ortopédicas. Todos los sobrevivientes de cáncer infantil en los Estados Unidos son elegibles bajo esta - ley para recibir acomodaciones y todas las instituciones academicas que reciban ayuda del gobierno (incluyendo co legios y universidades) deben respetar y seguir las leyes. Las acomodaciones incluyen modificaciones en el currículo (como permitir el uso de una calculadora y tiempo extra para completar las tareas o los exámenes) y el ambiente (como sentarse al frente del salón o permitir tiempo extra entra clases). he Individuals with Disabilities Education T ( Los Individuos con Discapacidades Acto de Educacional Act [IDEA]) La legislación IDEA (PL 105-17) requiere que las escuelas públicas provean “una educación apropiada y gratis en un ambiente que sea en lo menormente restrictivo” para los estudiantes discapacitados entre las edades de 3 y 21 años de edad. Para calificar para los servicios ofrecidos bajo IDEA, el estudiante debe de cumplir requisitos bajo por lo menos una discapacidad se indica en la ley - las que mas comunmente aplican a estudiantes tratados para el cáncer incluye “ discapacidad especifica del aprendizaje,” “herida traumatica de cerebro” o “ otro deterioro de la salud.” Para tener acceso a servicios bajo la legislación de IDEA, los padres deben iniciar el proceso solicitando que el estudiante sea evaluado por un “Plan de Educacional Individualizado” o IEP. El estudiante entonces se somete a un proceso de evaluación para determinar que asistencia es requerida. Una conferencia se lleva a cabo para discutir los resultados de la evaluación y, si el estudiante califica, para determinar un plan individualizado para encontrar las necesidades educativas especializadas identificadas. Servicios disponibles bajo la legislación de IDEA incluyen tutorías, colocaciones especializadas del salón de clases (como un salón de recurso), servicios psicológicos , adapta - | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Educational Issues | Version 4.0 | 10/13 Página 3 de 5

161 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil ción de educación física, terapia ocupacional del habla/lenguaje, y servicios de transportación. Todos los servicios y comodidades requieren por el estudiante deben ser especificado en el IEP (el documento escrito que describe el programa de educación especial). El IEP debe ser revisado y actualizado sobre una base anual para asegurar que continua resolviendo las necesidades educativas del estudiante. Los Americanos con Disabilities Acto (ADA) La ley ADA (PL 101-336) protoge contra discriminacion en el empleo, el transporte, la comunicación, el gobierno y lugares publicos para personas con incapacidades. Se garantiza la igualdad de acceso a los espacios publicos, even - tos, y oportunidades y puede ser especialmente util para estudiantes que buscan educacion superior o empleo. Donde puedo conseguir yo mas informacion? Informacion adicional esta disponible en el Centro de Información y Recursos para Padres website: www.parentcen - terhub.org ). Organización Americana de Cáncer Infantil, para la publicacion libre: Educando al Nino con Cancer, una guia para www.acco.org Patentes y Maestros (telefono: 1-855-858-2226, extensión 101; website: ). ® , Clinica de Supervivencia, City of Hope National Medical Center, Duarte, CA. Escrito por Wendy Landier, RN, PhD, CPNP, CPON Repasado por Debra L. Friedman, MD; Melissa M. Hudson, MD; Julie Blatt, MD; Joan Darling, PhD; and Scott Hawkins, LMSW Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation . Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, Nota: A través de esta serie de “ Health Links adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. Advertencia y Notificación de los Derechos de Propiedad : El “ Health Links Introduccion a los Efectos a largo plazo y las ” que Health Links ” y las “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers en colaboración con el comité de lo acompañan fueron creados y desarrollados por el Children’s Oncology Group Late Effects Committee and Nursing Discipline . relacionados con los efectos a largo Children’s Oncology Group Para propositos informativos : La información y el contenido de cada documento o series de documentos que han sido creados por el ” o con el titulo de “ plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ ”, ya Health Link Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) : Por favor busque el consejo medico o de algún otro proveedor de salud calificado es una organización de dedicada Children’s Oncology Group con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. A los doctores y otros proveedores de salud : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas - razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi ente de cáncer infantil. El Children’s Oncology Group reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. , o cualquier otra institución o miembro de el Children’s Oncology Group Children’s Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el . Oncology Group ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi Children’s Oncology Group : Aunque el Ningún reclamo en cuanto a la competencia - cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Educational Issues | Version 4.0 | 10/13 Página 4 de 5

162 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil : Ninguna obligación es asumida y sus afiliados Children’s Oncology Group y sus afiliados a indemnizar. Esto protege al Children’s Oncology Group No hay obligacion o consenso de parte del Children’s Oncology Group por el - sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del Children’s Oncology y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda Group perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Derechos de Propiedad Children’s Oncology Group retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora El Children’s Oncology Group tomando Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Educational Issues | Version 4.0 | 10/13 Página 5 de 5

163 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Asuntos Emocionales Después del Cáncer Infantil La Experiencia de Cáncer Diagnosis y Tratamiento La diagnosis y el tratamiento son etapas difíciles para niños con cáncer y sus familias. Durante la diagnosis, los niños tienen exámenes y procedimientos que son nuevos, dolorosos y dan miedo. Para los padres, la ansiedad al esperar los resultados de estos exámenes es lo peor durante este tiempo. Conocer la diagnosis puede ser un alivio, - especialmente cuando hay tratamientos efectivos disponibles. Estos tratamientos, sin embargo, pueden ser desa gradables para los niños y puede ser una molestia para la familia tener que ver o dar estos tratamientos. Exámenes y procedimientos son repetidos durante el tratamiento para verificar si el tratamiento le esta ayudando o si debe de ser cambiado. Los niños con cáncer y sus padres están en el hospital frecuentemente y a menudo están lejos de su fa - milia, amigos, hogar, trabajo o escuela por largos plazos de tiempo. Los padres se preguntan si el cáncer de su hijo/a será curado, como reducir el sufrimiento de su hijo/a, y como hacer lo mejor de la vida. Los hermanos y hermanas también se preocupan y a veces se ponen celosos de su hermano/a con cáncer. Los sobrevivientes de cáncer infantil y sus hermanos a menudo se preocupan por sus padres y en su afan de protegerlos, les ocultan sus sentimientos. Como resultado, los niños con cáncer, sus padres, y hermanos/as se pueden sentir enojados, aislados, tristes y con miedo durante este tiempo de tratamiento. Periodos de depresión y ansiedad pueden ocurrir. Después del tratamiento Para los sobrevivientes y sus familias, el final del tratamiento puede traer sentimientos nuevos al aprender los re - sultados buenos (y no tan buenos) de un tratamiento exitoso. Durante el tratamiento, las personas se preocupan con - sobrevivir día a día. Es después del tratamiento, que las personas empiezan a pensar y reconciliarse con su experien - cia. Las personas pueden experimentar varias emociones después del tratamiento que son diferentes para cada per sona. Sobrevivientes y sus familias a veces tienen miedo de que su cáncer regrese. Los exámenes regulares para la recurrencia de cáncer o efectos secundarios, y posiblemente nada mas hablar de estos efectos secundarios pueden estresar a la persona. La diagnosis de efectos secundarios relacionados al tratamiento de cáncer o algún problema nuevo con su salud no relacionado al cáncer que tuvo de niño, también puede causar angustia. Los aniversarios de eventos de el cáncer, como la fecha de su diagnosis o final de su tratamiento o cambios de vida como el comienzo de clases, o la normalización de relaciones con sus amigos y compañeros pueden traer emociones de alivio y felici - dad, tristeza sobre la perdida de una niñez regular, y culpabilidad de haber sobrevivido el cáncer cuando otros no lo hicieron. Algunos sobrevivientes pueden sentirse vulnerables a causa de su experiencia con el cáncer y pueden estar preocupados por su salud y actuar con cuidado. Los padres de sobrevivientes de cáncer quieren proteger sus hijos de peligro. Estos sentimientos de protección pueden aumentar tensiones entre padres y adolescentes sobre temas como independencia, especialmente en áreas que pueden afectar la salud. Otros adolescentes que han tenido cáncer - creen que porque han sobrevivido el cáncer pueden hacer lo que sea - y esto los hace invencibles. Estos pensamien tos pueden causar que el sobreviviente asuma ciertas actividades difíciles con sus estudios, trabajo o pasatiempos. Estos mismos pensamientos pueden causar que los sobrevivientes tomen parte en comportamientos perjudiciales o con mucho riesgo. Algunas reacciones a los estreses de la supervivencia La mayoría del tiempo, los sobrevivientes de cáncer infantil y sus familiares responden bien a los estreses de la supervivencia. Hay veces que los problemas físicos u otros estreses relacionados con el cáncer infantil y situaciones comunes de todos los días pueden causar emociones intensas que necesitan atención médica. Algunos sobrevivien - tes y sus familiares pueden experimentar periodos de ansiedad que pueden o no causados por los recuerdos de los | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Emotional Issues | Version 4.0 | 10/13 Página 1 de 5

164 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil aspectos negativos del tratamiento. Ellos pueden desarrollar tres tipos de síntomas comúnmente visto en personas con el desorden de estrés postraumático (PTSD), incluyendo (1) la recolección de memorias desagradables de cáncer, (2) demasiadas reacciones emocionales o físicas demasiadas, y (3) hacer todo lo posible para evitar memorias de cáncer. Generalmente, los sobrevivientes de cáncer infantil y sus familiares no desarrollan todos los tres síntomas y - PTSD. Pero es posible que uno o dos de estos síntomas afecten relaciones, la escuela, el trabajo, u otras áreas impor tantes en la vida de un superviviente. - El desarrollo personal puede ser otra reacción a los estreses de la supervivencia. Después de años de vivir con cánc - er infantil, ciertos sobrevivientes y sus familias descubren que han tenido cambios personales benéficos o significa tivos, en sus relaciones con otras personas, y sus valores como resultado de sus experiencias. No quiere decir que estos sobrevivientes escogieron tener cáncer, si no que han encontrado cambios positivos como resultado de haber sobrevivido esta experiencia estresante. Experimentar estos cambios positivos es a veces referido como crecimiento postraumático. Factores de Riesgos Ciertos factores pueden afectar el desarrollo de depresión y ansiedad con síntomas de estrés postraumático después de la diagnosis y tratamiento del cáncer infantil, incluyendo: • Ser del género femenino La adolescencia o ser un adulto joven • Trauma previo • Salud mental o problemas de aprendizaje antes del cáncer infantil • Niveles bajos de apoyo social • Historia de depresión, ansiedad, o PTSD en padres • Cáncer del cerebro o columna (El sistema nervioso central) • Tratamiento de cáncer al sistema nervioso central (radiación a la cabeza, quimioterapia al liquido espinal) • Transplante de células hematopoeticas (medula ósea o transplante de células madre) • Cuando Buscar Ayuda Personas con angustia (1) que dura dos semanas o más, y/o (2) interfiere con su habilidad de hacer la tarea o trabajo, - deben de llamarle a su proveedor de cuidado de salud para hablar sobre la necesidad de ser referido a un profesion al de salud mental. Debido a que problemas con su salud física pueden causar estos mismos síntomas, un examen completo administrado por su doctor general es recomendado si estos síntomas ocurren. Algunas indicaciones de que ayuda es necesitada incluyen: Cambio en apetito o peso • Llorar fácilmente o la inhabilidad de llorar • Bajo nivel de energía o cansancio constante • Dormir demasiado • No dormir bien • Desesperación: pensamientos de muerte, escapa o suicidio • Aumento en irritabilidad • Interés baja en actividades que antes eran placenteras • | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Emotional Issues | Version 4.0 | 10/13 Página 2 de 5

165 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil • Recolección no deseada de aspectos de cáncer dolorosos • Tener mucho miedo, malestar o enojo cuando piensa acerca del cáncer • Reacciones físicas (ritmo cardiaco acelerado, inhabilidad de respirar, nausea) cuando piensa acerce del cáncer Eludir sus visitas para el cuidado de su salud • Negarse en hablar acerca del cáncer • Comparte su preocupaciones con su proveedor de cuidado medico Si usted experiencia angustia, hable sobre eso con su doctor general o con su especialista de cáncer infantil. Su angustia puede estar relacionada a su experiencia con el cáncer, preocupaciones con los efectos secundarios, o otros eventos en su vida. Cualquiera que sea el caso, hay tratamiento. Hablar con otros sobre sus miedos y preocupa - ciones es el primer paso en conseguir el control. Además de recibir ayuda de un proveedor de salud médica, algunas personas también encuentran apoyo en grupos de apoyo, participaciones en actividades en su lugar de veneración, o espiritualidad. Contar con apoyo puede ayudar a los sobrevivientes y sus familias controlar estas dificultades en maneras útiles. Opciones de Tratamiento Tratamientos para la depresión, ansiedad, y síntomas de estrés postraumático incluyen terapia en grupo o individual y medicamento. El medicamento usualmente trabaja en combinación con otra forma de terapia. Profesionales para la salud mental (incluyendo enfermeras, siquiatras, sicólogos, y trabajadores sociales) dan tratamiento para la depresión y ansiedad en varios locales comunitarios. Su proveedor de cuidado medico le puede ayudar encontrar un profesional adecuado para la salud mental en su comunidad. Recursos Hay apoyo disponible para sobrevivientes de cáncer infantil y sus familias que tienen ansiedad y depresión después de su tratamiento. Estos son unos de los recursos que hay disponibles: ( Sociedad Americano de Cáncer ) www.cancer.org Esta página de Internet tiene servicios y programas, e historias de esperanza para sobrevivientes de cáncer y sus familias. Asociación Americana Siquiátrica ( www.healthyminds.or g ) Esta página de Internet provee indicaciones para escoger un siquiatra. ( La Asociación Americana de Desordenes de Ansiedad ) g www.adaa.or - Esta página da información que puede ayudar a personas con desordenes de ansiedad encontrar tratamiento y de sarrollar aptitudes para ayudarse a uno mismo. Organización Americana de Cáncer Infantil ( www.acco.or g ) Esta página ofrece educación, apoyo y servicio para las familias de niños con cáncer, sobrevivientes de cáncer, y los profesionales que los cuidan. Grupo de Oncología Infantil www.childrensoncologygroup.or g ) ( - Esta página de Internet tiene información para padres y familias relacionada al cáncer especifico, etapa de tratamien to y edad. También da consejos de cómo navegar el sistema medico, recibir y dar apoyo, y mantener un vida salud - able. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Emotional Issues | Version 4.0 | 10/13 Página 3 de 5

166 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Instituto Nacional de Cuidado Mental ( www.nimh.nih.go v ) Esta página tiene información general sobre la ansiedad y depresión, tratamientos disponibles, como encontrar un proveedor para su salud mental, y como encontrar reportes y otra información. Vea estos sitios específicos en su página de Internet: http://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml http://www.nimh.nih.gov/health/topics/depression/index.shtml Guías Con Enfoque al Paciente ( http://childhoodcancerguides.org/sresource.htm l ) - Esta página tiene una lista de clínicas de seguimiento a largo plazo sobrevivientes del cáncer infantil y artículos rela cionados a las necesidades sociales de un sobreviviente. Revisado por Sheila Judge Santacroce, PhD, APRN, CPNP, Universidad de Carolina del Norte en Chapel Hill, Chapel Hill, NC. Adaptado originalmente por Debra Kent, RN, MSN, CPNP, Supervivencia del Centro de Cáncer, Centro Médico del Hospital Infantil de Cincinnati, Cincinnati, OH, de “Manejamiento de Emociones después de enfermedades de la niñez” por Melissa Hudson, MD, Después de la Terminación de la Clínica (ACT) de Terapia, Hospital de Investigación de Niños de St. Jude, Memphis, TN. Repasado por Joe Don Cavender, MSN, RN, CPNP; Daniel Armstrong, PhD; Joan Darling, PhD; Catherine L. Woodman, MD; Scott Hawkins, LMSW; y Octavio Zavala. Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation . Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org Health Links Nota: A través de esta serie de “ ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. Advertencia y Notificación de los Derechos de Propiedad Health Links ” y las “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers : El “ Health Links Introduccion a los Efectos a largo plazo y las ” que lo acompañan fueron creados y desarrollados por el Children’s Oncology Group en colaboración con el comité de Late Effects Committee and Nursing Discipline . : La información y el contenido de cada documento o series de documentos que han sido creados por el Children’s Oncology Group Para propositos informativos relacionados con los efectos a largo plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ” o con el titulo de “ Health Link ”, ya sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. : Por favor busque el consejo medico o de algún otro proveedor de salud calificado A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) es una organización de dedicada Children’s Oncology Group con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo A los doctores y otros proveedores de salud para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi - ente de cáncer infantil. El Children’s Oncology Group reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. , o cualquier otra institución o miembro de el Children’s Oncology Group Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el Children’s Oncology Group . Ningún reclamo en cuanto a la competencia : Aunque el Children’s Oncology Group ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi - cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. Children’s Oncology Group y sus afiliados Children’s Oncology Group : Ninguna obligación es asumida y sus afiliados a indemnizar. Esto protege al No hay obligacion o consenso de parte del - sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni Children’s Oncology Group por el | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Emotional Issues | Version 4.0 | 10/13 Página 4 de 5

167 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Children’s Oncology zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda Group perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. Derechos de Propiedad : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Children’s Oncology Group El retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el tomando a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del Children’s Oncology Group alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Emotional Issues | Página 5 de 5 | 10/13 Version 4.0

168 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Asuntos de Salud de la Mujer Despues del Tratamiento para el Cáncer Infantil - Los efectos de la terapia de cáncer infantil en el sistema reproducción femenino depende en varios factores, incluy endo la edad de la niña durante el tiempo terapéutico, el tipo especifico y localización del cáncer, y el tratamiento que fue administrada. Es importante entender como funcionan los ovarios y los órganos reproductivos de la mujer y como pueden ser afectados por el tratamiento dado para tratar el cáncer durante la infancia. El Sistema Reproductivo Femenino Al nacer, los ovarios contienen todos los óvulos que iran a tener. Cuando llega el momento de comenzar la pubertad, la glándula pituitaria en el cerebro Ovario señala a los ovarios con la liberación de dos hormonas (FSH y LH). Los ovarios secretan las hormonas femeninas estrógeno y progesterona, que son necesarias para la función reproductora. Normalmente, durante el ciclo de Útero menstruación mensual, un ovulo se madura y es liberado de los ovarios. Si el ovulo no es fertilizado, comienza la menstruación. El ciclo se repite cada 28 días. Con cada ciclo de menstruación, el numero de óvulos se disminuye. Cuando la mayoría de los óvulos son disminuídos de los ovarios de la mujer, empieza la menopausia. Durante la menopausia, el ciclo de menstruación termina, los ovarios dejan de producir hormonas, y la mujer no podrá quedar embarazada. ¿Como afecta la terapia de cáncer a los ovarios? Ciertas drogas de quimioterapia, terapia de radiación, y la cirugía a veces puede dañar los ovarios, reduciendo la reserva de óvulos que guardan. Cuando los ovarios no son capaces de producir óvulos ni hormonas, esto se llama insuficiencia ovárico. ¿Cuáles son las causas de la insuficiencia ovárico? - La quimioterapia de tipo “alquilantes” (como ciclofosfamida, mostaza nitrogenada y busulfan) tiene mas probab ilidades de afectar la función ovárica. La dosis total de alquilantes utilizados durante el tratamiento del cáncer es importante para determinar la probabilidad de danos a los ovarios. Con la totalidad de dosis mas alta, la probabilidad de dañar a los ovarios aumenta. Si el tratamiento para el cáncer infantil incluyo una combinación de radiación y qui - mioterapia alquilante, el riesgo de insuficiencia ovárico también puede ser aumentado. Terapia de radiación puede afectar la función ovárico en dos maneras: Insuficiencia primario (directo) de los ovarios puede ser causado por la radiación que se dirige directamente en o cerca de los ovarios. La edad de la persona en el momento de la radiación y la dosis total de la radiación pueden afectar si ocurre o no la insuficiencia ovárico. En general, las niñas mas jóvenes tienden a tener menos daño a los ovarios que las personas que recibieron dosis iguales, pero que fueron adolescentes o adultos jóvenes en el momen - to de la radiación. Sin embargo, dosis altas usualmente causan que los ovarios dejen de funcionar en la mayoría de mujeres a pesar de la edad. Insuficiencia secundario (indirecto) de los ovarios puede ocurrir como resultado de la terapia de radiación al cerebro. La glándula pituitaria, localizada al centro del cerebro, regulariza la producción de dos hormonas (FSH y LH) necesitadas para la función de los ovarios. Radiación al cerebro en dosis altas puede dañar la glándula pituitaria, resultando en bajos niveles de estas hormonas. Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Female Health Issues | Version 4.0 | | 10/13 Página 1 de 5

169 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil siempre ovarios fueron extirpados (ooforectomía bilateral) durante la terapia de cáncer, esto dos . Si los Cirugía resulta en insuficiencia ovárico. Este tipo de insuficiencia ovárico se le llama “menopausia quirúgica.” Si solamente un ovario fue extirpado (ooforectomía unilateral ), la menopausia puede ocurrir antes de tiempo (“menopausia prematura”). ¿Qué tipos de terapia de cáncer aumenta el riesgo de insuficiencia ovárico? Mujeres que recibieron la siguiente terapia pueden estar en riesgo de insuficiencia ovárico: • Terapia de Radiación al cualquier de las siguientes áreas: – Abdomen entero – Pelvis – La parte inferior de la Espina Dorsal (áreas lumbar y sacral) – Irradiación Corporal Total (TBI) Cabeza/cerebro (craneal) – si la dosis fue de 30 Gy (3000 cGy/rads) o mas – Quimioterapia • - la clase de droga llamada “alquilante” puede causar insuficiencia ovárico cuando es dada en dosis altos. Ejemplos de estas drogas son: Agentes Alquilantes : Busulfán – Carmustina (BCNU) – – Clorambucil ® – Ciclofosfamida (Cytoxan ) – Ifosfamida – Lomustina (CCNU) – Mecloretamina (mostaza nitrogenada) – Melfalán – Procarbacina Tiotepa – : Metales Pesados – Carboplatino Cisplatino – : Alquilante no clásico Dacarbazina (DTIC) – – Temozolamida Cirugía : – Extirpación de un ovario o los dos ovarios | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Female Health Issues | Version 4.0 | 10/13 Página 2 de 5

170 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil ¿Cuáles son los efectos de la terapia de cáncer infantil en el sistema reproductivo femenino? Insuficiencia de entrar a la pubertad 1. . La niñas pre-pubertal que han recibido terapia de cáncer que resulta en insuficiencia ovárica van a necesitar terapia hormonal (hormonas recetadas por un doctor) para que puedan progresar hacia la pubertad. Si esto sucede, se debe referir a un endocrinólogo (doctor de hormonas) para una evaluación y el mantenimiento. . Varias mujeres quienes ya están menstruando dejaran de Cesación temporal del ciclo de menstruación 2. tener su periodo mensual durante el tratamiento del cáncer. En muchos de los casos, el ciclo de menstruación resumirá cualquier tiempo después de terminar el tratamiento de cáncer, aunque el tiempo de esto es impre - decible. En otros casos, se llevara varios años antes de comenzar el ciclo de menstruación. Como los óvolos Si son liberados antes del ciclo menstrual, el embarazo puede ocurrir antes que el periodo menstrual resume. el embarazo no es deseado, el control de la natalidad (anticoncepción) debería ser utilizado, aunque los ciclos menstruales no se han resumido . 3. . La menopausia (la cesación Cesación permanente de los ciclos menstruales (menopausia prematura) permanente de los ciclos menstruales) ocurre en una edad promedia de 51 anos. Mujeres quienes ya han - estado menstruando antes de la terapia de cáncer algunas veces desarrollan insuficiencia ovárica como resul tado del tratamiento de cáncer y nunca resumen los ciclos menstruales. Algunas otras mujeres resumen sus ciclos menstruales, pero luego dejan de menstruar mas temprano de lo esperado. Si una mujer actualmente esta menstruando pero recibió la quimioterapia o la radiación que puede afectar la función de los ovarios o ha Si una mujer que esta al tenido un ovario extirpado, ella corre el riesgo de entra a la menopausia prematura. riesgo de la menopausia prematura desea tener hijos, es mejor no demorar la maternidad después de . los treinta años, porque el periodo de la fertilidad puede ser reducido después de la terapia de cáncer 4. Falta de las hormonas femeninas . Mujeres con insuficiencia ovárica no producen suficiente estrógeno. El estrógeno es necesitado para otras funciones no solamente para la reproducción - es muy importante para el - mantenimiento de los huesos fuertes y saludables, un corazón saludable, y el bienestar en general. Las mu jeres jóvenes con insuficiencia ovárica deberían de ver a un endocrinólogo (especialista de hormonas) para la terapia de reemplazo hormonal, que serán necesarias hasta que llegen a la mediana edad. Infertilidad . La infertilidad es la incapacidad de lograr un embarazo después de un año de tener relaciones 5. sexuales sin protección. En las mujeres, la infertilidad ocurre cuando los ovarios no producen los óvulos (in - suficiencia ovárico), o cuando los órganos de la reproducción no pueden sostener un embarazo. La infertilidad puede ser el resultado de una cirugía, la radiación, quimioterapia, o cualquier combinación de estos. También podrá haber otras razones que causan la infertilidad que no son relacionadas al tratamiento de cáncer . Si una mujer tiene periodos menstruales mensuales regulares y niveles de hormonas normales (FSH, LH, y estradiol), es probable que sea fértil y capaz de tener un bebe. Si una mujer no tiene los periodos menstruales mensuales, o si tiene periodos menstruales solo con el uso de suplementos de hormonas, o si tuvo que tomar hormonas para entrar a la pubertad, ella es probable de ser estéril. A las niñas que se les han extirpado los dos ovarios quirúrgicamente serán infértiles. A las niñas que se les han extirpado el útero quirúrgicamente (histerectomía) pero aun tienen los ovarios que funcionan pueden ser - madres con el uso de un sustituto gestacional (una mujer que carga el embarazo). Las mujeres que son in fértiles deberían de discutir sus opciones con un especialista de fertilidad y su oncólogo. El uso de los óvulos donados puede ser una alternativa para algunas mujeres. Opciones adicionales pueden incluir la adopción de un bebe que no sea relacionado biológicamente o vivir sin hijos. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Female Health Issues | Version 4.0 | 10/13 Página 3 de 5

171 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil - . Ciertas terapias usadas durante el tratamiento para el cáncer infantil pueden aumen Riesgos del embarazo 6. tar el riesgo de enfrentar problemas que una mujer puede tener durante un embarazo o el parto. Las siguientes mujeres pueden tener el riesgo aumentado: - Mujeres que tuvieron radiación en el abdomen completo, el pelvis, la espina dor sal inferior, o irradación corpo • ral total(TBI) corren el riesgo de un aborto natural, parto prematuro, o problemas durante el parto. - Mujeres que recibieron quimioterapia antraciclina (como doxorrubicina o daunorubicina), y mujeres que recibi • eron radiación a la parte superior del abdomen o el pecho pueden tener el riesgo de problemas del corazón que Health Link ”). Heart Health pueden empeorar con el embarazo o el parto (vea el relacionado: “ Mujeres con estos riesgos deben ser observadas atentamente por un obstetra que sea calificado para cuidar de las mujeres con embarazos de riesgos altos. Afortunadamente, en la mayoría de los casos, no hay mayor riesgo de cáncer o defectos congénitos en niños naci - dos de sobrevivientes de cáncer infantil. En raros casos, si el tipo de cáncer en la infancia era genético (heredado), entonces puede haber un riesgo de transmitir este tipo de cáncer en un niño. Usted debe verificar con su oncólogo si no esta seguro si el tipo de cáncer que tuvo fue genético. ¿Qué monitorización se recomienda? Mujeres que han tenido alguno de los tratamientos contra el cáncer que puedan afectar la función ovárica debería - tener un chequeo anual, que incluye una evaluación cuidadosa de la progresión a través de la pubertad, la menstru ación y historial del embarazo, y la función sexual. La sangre puede ser examinada para los niveles de hormonas (FSH, LH, y estradiol). Si se detecta algún problema, una referencia a un endocrinólogo (especialista de hormonas) y/o otros especialistas pueden ser recomendados. Para las mujeres con insuficiencia ovárico, una prueba de densidad ósea (tipo especial de rayos X) para comprobar si hay adelgazamiento de los huesos (osteoporosis) también puede ser recomendado. Escrito por Marcia Leonard, RN, PNP, Clínica de Seguimiento a Largo Plazo, Departamento de Hematología-Oncología Pediátrico, Centro Médico de la Universidad de Michigan, Ann Arbor, MI. Repasado por Charles Sklar, MD; Julie Blatt, MD; Daniel Green, MD; Melissa M. Hudson, MD; Wendy Landier, RN, PhD, CPNP, © ; Smita Bhatia, MD, MPH; y Peggy Kulm, RN, MA. CPON Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous . support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, Health Links A través de esta serie de “ Nota: adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Female Health Issues | Version 4.0 | 10/13 Página 4 de 5

172 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Advertencia y Notificación de los Derechos de Propiedad Health Links ” y las “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers : El “ Health Links Introduccion a los Efectos a largo plazo y las ” que Children’s Oncology Group . Late Effects Committee and Nursing Discipline en colaboración con el comité de lo acompañan fueron creados y desarrollados por el relacionados con los efectos a largo Children’s Oncology Group Para propositos informativos : La información y el contenido de cada documento o series de documentos que han sido creados por el ”, ya Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ Health Link ” o con el titulo de “ sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. : Por favor busque el consejo medico o de algún otro proveedor de salud calificado A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) es una organización de dedicada Children’s Oncology Group con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo A los doctores y otros proveedores de salud para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas - razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. ente de cáncer infantil. El Children’s Oncology Group Children’s Oncology Group Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el , o cualquier otra institución o miembro de el Children’s Oncology Group . Children’s Oncology Group - Ningún reclamo en cuanto a la competencia : Aunque el ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. y sus afiliados a indemnizar. Esto protege al Children’s Oncology Group No hay obligacion o consenso de parte del : Ninguna obligación es asumida y sus afiliados Children’s Oncology Group sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni por el Children’s Oncology Group - Children’s Oncology zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda Group perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. Derechos de Propiedad : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Children’s Oncology Group retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora El Children’s Oncology Group a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el tomando alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Female Health Issues | Version 4.0 | 10/13 Página 5 de 5

173 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil - Encontrando y Pagando su Cuidado Médico después del Trata miento por el Cáncer Infantil Como sobreviviente de cáncer infantil, es importante que usted tenga visitas médicas regulares, por que posible - mente algunos de los tratamientos que usted recibió pueden aumentar las posibilidades de tener problemas con su salud cuando crezca. Muchas veces es difícil encontrar y pagar el cuidado medico que necesita. Hay varias cosas - que puede hacer para asegurase que esta recibiendo el mejor cuidado médico que necesita. Aquí hay unas sugeren cias. . Muchas clínicas en donde tratan a niños que Si es posible, encuentre una clínica seguimiento a largo plazo tienen cáncer tienen seguimiento a largo plazo. Un directorio de clínicas de seguimiento a largo plazo asociadas - con las instituciones del Grupo de Oncología Infantil se puede encontrar en este enlace: http://applications.chil drensoncologygroup.org/Surveys/lateEffects/lateEffects.PublicSearch.asp . Si usted todavía es visto en unas de estas clínicas, o si hay unas de estas clínicas cerca de donde usted vive, póngase en contacto con ese centro para hablar de sus opciones para obtener cuidado de seguimiento a largo plazo. Clínicas de seguimiento a largo plazo usualmente lo revisan para efectos secundarios y educa a sobrevivientes sobre maneras de disminuir el riesgo de problemas de salud después del cáncer. Estas clínicas, generalmente son lugares excelentes para completar una evaluación de salud, pero no están diseñadas para cumplir con las necesidades comunes de un sobreviviente. Además, algunos de los programas de seguimiento a largo plazo nada más pueden ver a sobrevivientes hasta que sean adultos, que indica la edad de 18 o 21. Entonces, si está atendiendo esta clínica de seguimiento a largo plazo, - es importante encontrar también a un medico general que pueda hacerse cargo de sus necesidades médicas gene rales. Escoja un doctor general en su comunidad . Los mejores médicos generales para adultos son los que se han especializado en familiar o medicina interna. La posibilidad de encontrar un doctor general que tiene experiencia con el cuidado de sobrevivientes de cáncer es baja, debido a que es raro que niños tengan enfermedades serias como cáncer. Sin embargo, es importante buscar un médico que es minucioso, que este bien entrenado, y que lo escuche. Pídale a sus amigos y familia que le ayuden a identificar médicos con estas cualidades que practican en su área. Haga una cita para chequeos generales y hable sobre su historial médico y los riesgos de salud durante su visita. Es mejor hacer esto cuando está bien de salud, y no cuando lo están viendo por que está enfermo. Dígale a su médico de las guías del Cuidado de seguimiento a largo plazo para Sobrevivientes de Cáncer www.survivorshipguidelines.org Infantil , disponible en el Internet en la página del . Esta lista de requisitos para el manejo de detección de salud son diseñados para el uso de profesionales que están proporcionando cuidado en seguimiento a largo plazo a sobrevivientes de cáncer infantil. . Obtenga consejos del doctor que trató su cáncer Organice un equipo médico local para que le den su cuidado infantil y su doctor general sobre quien debe ser parte del equipo medico para su cuidado de seguimiento a largo plazo. Su equipo siempre debe tener un doctor general y un dentista. Dependiendo en su situación, usted también va tener que incluir otros profesionales que son importantes para mantener su salud, como un terapista físico o psicólo - go. Su doctor general le puede ayudar a seleccionar a estos individuos y/o referirlo a ellos. . Pregúntele a su hospital o clíni - Comparta su expediente médico con todos los miembros de su equipo medico ca que mande copias de su tratamiento médico a todos sus nuevos proveedores médicos. Si es posible, pregúntele al doctor que lo trató por su cáncer infantil que le de un resumen con su diagnosis y tratamiento, riesgos para el futuro, y exámenes médicos recomendados. Mantenga una copia de su resumen y secciones importantes de su expediente médico en un archivo personal. Este seguro que cada nuevo proveedor médico que tenga este conciente de su pasa - | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Finding and Paying for Healthcare | Version 4.0 | 10/13 Página 1 de 5

174 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil do medico y riesgos secundarios que puede tener como resultado de su tratamiento para el cáncer. Si necesita ayuda llame al hospital, clínica, o centro médico en donde recibió su tratamiento para obtener estos expedientes médicos, . . Para enterarse si esta recibiendo el cuidado adecuado, Sea un compañero en el cuidado médico que recibe hágase estas preguntas: ¿Sé mi diagnosis de cáncer y el tratamiento específico que recibí? • ¿Sé los problemas de salud que pueden ocurrir despues de este tratamiento? • ¿Hé compartido esta información con mis proveedores médicos? • ¿Me revisa frecuente mi proveedor médico para ver si tengo problemas con mi salud relacionados con cáncer • infantil? ¿Me aconseja mi proveedor médico de cosas que debo o no debo de hacer para mantenerme saludable • después de mi tratamiento por cáncer infantil? Explore todos los recursos que existen para pagar su cuidado médico. El cuidado médico es caro y personas que han tenido enfermedades serias muchas veces se enfrentan con obstáculos cuando tratan para obtener una adecuada atención de seguimiento. En los Estados Unidos, las compañías de seguro médico están obligados a proporcionar cobertura para los sobrevivientes de cáncer infantil, independientemente de las condiciones médicas pre-existentes. La ley también ahora proporciona la opción de cobertura bajo la póliza de seguro médico de los padres para los adultos jóvenes menores de 26 años. Más información sobre sus derechos y protecciones bajo la ley de cuidado de la https:// salud (comúnmente conocido como “La Ley de Cuidado de Salud Asequible”) está disponible en este enlace: . Si usted no tiene seguro, usted debe buscar www.healthcare.gov/how-does-the-health-care-law-protect-me/ asistencia de una organización de servicio social local o su trabajador social del hospital para identificar sus opciones de cobertura. Como sobreviviente del cáncer infantil, usted ya a vencido muchos obstáculos. ¡¡El proceso de obtener y pagar por su cuidado medico puede ser desalentador, pero vale la pena!! Lista de Cobertura del Cuidado de un Sobreviviente de Cáncer Defina sus necesidades para el cuidado de su salud. Pregúntese: ¿Necesito un proveedor médico para chequeos generales? • ¿Tengo problemas crónicas de salud que requieren visitas frecuentes al médico? • ¿Tengo problemas que necesitan ser observados periódicamente por un especialista? • ¿Tengo prescripciones médicas caras? • ¿Necesito servicios de rehabilitación o prótesis? • Explore todos los recursos para la cobertura de su cuidado médico: Cobertura a través de la póliza de sus padres o cónyuge • • Aseguransa de salud ofrecida por su colegio o trabajo • Los programas estatales y federales de asistencia pública que pueden reducir sustancialmente el costo de la cobertura Descuentos o cuidado de salud gratis ofrecidos por clínicas establecidas por el departamento de salud o igle • - sias | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Finding and Paying for Healthcare | Version 4.0 | 10/13 Página 2 de 5

175 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil • Programas para medicinas de bajo costo o gratis ofrecidos por compañías farmacéuticas para familias de bajo ingreso Si tiene aseguransa, aprenda más sobre su póliza. • ¿Cuáles servicios son cubiertos? ¿Ofrece su plan descuentos para prescripciones? • ¿Son las referencias a especialistas controladas por su doctor primario? • • ¿Hay limitaciones hechas basadas en condiciones médicas preexistentes? • ¿Hay cobertura nada mas cuando el estudiante es de tiempo completo? • ¿La cobertura se termina a cierta edad? Pida ayuda para aprender de los recursos actuales y poder localizar nuevos. Pida a miembros de su familia, amigos, manejadores de aseguransa en el hospital o clínica y representantes de • aseguransa que le expliquen detalles sobre sus beneficios incluidos en su aseguransa. • Llame a un trabajador social en la clínica o hospital para preguntarles por ayuda para encontrar recursos en el estado o comunidad para su cuidado medico. • Investigue servicios ofrecidos por organizaciones nacionales caritativas (ejemplo, Club de Leones para prótesis ocular). www.cuidadodesalud.gov Visite • para determinar sus opciones de cobertura de seguro y para determinar si - usted califica para un descuento o cobertura gratuita disponible para las personas con bajos ingresos o disca pacidad. Prevenga lapso en cobertura. Planee transiciones de aseguransa médica que ocurren cuando se gradué del • colegio, exceso de edad de la cobertura de los padres, o cambie de trabajos. Sea consciente de las leyes que le pueden ayudar a conservar sus beneficios de aseguransa. Las sigui - entes leyes se pueden aplicar a sobrevivientes de cáncer viviendo en los Estados Unidos: - ACA por sus siglas en inglés (“La Ley de Cuidado de Salud Asequible”), la ley general de la reforma de salud aproba da en los Estados Unidos el 30 de Marzo de 2010, creo un mercado de Seguros de Salud y los nuevos derechos y protecciones que hacen que la cobertura de seguro de salud más justo y más fácil de entender. Más información está www.cuidadodesalud.gov disponible en . (Acto de Consolidación y Ceder de Ómnibus) requiere que patrones o negocios grandes hagan disponible COBRA aseguransas por cierto tiempo para sus empleados (y sus dependientes) que son despedidos. HIPAA (Acto de portabilidad de aseguransa de salud y contabilidad del 1996) permite que personas con condiciones pre-existentes mantengan su aseguransa comprensiva cuando están cambiando planes de aseguransa o trabajos. Bajo la nueva ley de salud en los Estados Unidos, la elegibilidad HIPPA proporciona mayor protección que las que están disponibles bajo la ley del estado. Sea persistente cuando se encuentre con obstáculos. Trate de no desesperarse. Termine y continue aplicaciones. • Apele negaciones con cartas de apoyo de parte de su proveedor médico. • Contacte grupos como Candlelighters y La Coalición Nacional de Sobrevivientes de Cáncer para más infor • - mación sobre los recursos médicos que existen. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Finding and Paying for Healthcare | Version 4.0 | 10/13 Página 3 de 5

176 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil • ¡No se de por vencido! Recursos Recomendados: La Coalición Nacional de Sobrevivientes de Cáncer es una organización conducida por pacientes, para apoyar a sobrevivientes de cáncer. Su folleto, “Almanaque de un Sobreviviente de Cáncer”, incluye muchas organizaciones y agencias que ofrecen ayuda sobre ciertos temas relacionados a cáncer, incluyendo la búsqueda de cuidado medico accesible. El folleto esta disponible en su pagina de Internet, www.canceradvocacy.org . El número de teléfono es (877) 622-7937. Cancer Care , es una organización caritativa dedicada a proporcionar apoyo emocional, información, y ayuda práctica a personas con cáncer y sus seres amados. También ofrecen asistencia para ayudar a las personas con un historial de cáncer a comprender las disposiciones de La Ley de Cuidado de Salud Asequible. 1-800-813-HOPE (4637). www. . cancercare.org Escrito por Melissa M. Hudson, MD, Sally Wiard, MSW, LCSW, y Allison Hester, RN, MSN, CPNP, Después de la terminación de la Clínica(ACT) de Terapia,Hospital de Investigación de Niños de St. Jude, Memphis, TN. Adaptado del boletín de Noticias de CCSS, Primavera 2003, usado con permiso. Repasado por Leslie L. Robison, PhD; Kevin Oeffinger, MD; Peggy Kulm, RN, MA; Scott Hawkins, LMSW; y Octavio Zavala. Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation . Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, Nota: A través de esta serie de “ Health Links adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. Advertencia y Notificación de los Derechos de Propiedad Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers : El “ Health Links Introduccion a los Efectos a largo plazo y las ” que Health Links ” y las “ en colaboración con el comité de lo acompañan fueron creados y desarrollados por el Children’s Oncology Group Late Effects Committee and Nursing Discipline . relacionados con los efectos a largo Children’s Oncology Group Para propositos informativos : La información y el contenido de cada documento o series de documentos que han sido creados por el ” o con el titulo de “ plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ ”, ya Health Link Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) : Por favor busque el consejo medico o de algún otro proveedor de salud calificado es una organización de dedicada Children’s Oncology Group con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. A los doctores y otros proveedores de salud : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas - razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi ente de cáncer infantil. El Children’s Oncology Group reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. , o cualquier otra institución o miembro de el Children’s Oncology Group Children’s Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el . Oncology Group ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi Children’s Oncology Group : Aunque el Ningún reclamo en cuanto a la competencia - cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Finding and Paying for Healthcare | Version 4.0 | 10/13 Página 4 de 5

177 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil : Ninguna obligación es asumida y sus afiliados Children’s Oncology Group y sus afiliados a indemnizar. Esto protege al Children’s Oncology Group No hay obligacion o consenso de parte del Children’s Oncology Group por el - sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del Children’s Oncology y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda Group perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Derechos de Propiedad Children’s Oncology Group retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora El Children’s Oncology Group tomando Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Finding and Paying for Healthcare | Version 4.0 | 10/13 Página 5 de 5

178 Heart Health Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Manteniendo su Corazón Sano después del Tratamiento para Cáncer Infantil La mayoría de los sobrevivientes del cáncer infantil no desarrollan problemas del corazón; sin embargo, algunos de los tratamientos para el cáncer administrados durante la infancia pueden resultar en problemas cardiacos. Ya que - estos problemas con el corazón pueden ocurrir muchos años después de terminado el tratamiento de cáncer, es im portante que los sobrevivientes del cáncer infantil estén informados de los tratamientos que han recibido que pueden afectar su salud cardiaca. De esa manera, pueden adoptar las medidas necesarias para mantener su corazón sano, incluyendo visitas médicas regulares y exámenes de salud para monitorear su función cardiaca. Así, si un problema se presenta, puede ser detectado y tratado a tiempo. ¿Como trabaja el corazón? Vasos sanguíneos El corazón es un órgano muscular que funciona como el centro del sistema circulatorio del cuerpo. El corazón es responsable de bombear sangre oxigenada y nutrientes a los tejidos del cuerpo. Está dividido en cuatro compartimientos (dos atrios y dos ven - Válvula trículos) que trabajan juntos para bombear la sangre. Las válvulas - dirigen la trayectoria de la sangre a través de los diferentes com partimientos del corazón y al entrar a los vasos sanguíneos. El ritmo de contracción cardiaca y el pulso del corazón son coordinados por o Atri Pericardio diferentes nervios que mandan impulsos eléctricos a diferentes partes del corazón. Una membrana (pericardio) rodea y protege el corazón y lo ancla dentro del pecho. Sistema eléctrico les Ventric ¿Cuales tratamientos de cáncer pueden causar problemas cardiacos? El corazón puede ser afectado por ciertos tipos de quimioterapia y radiación. Quimioterapia con antraciclina Las antraciclinas (anthracycline) son usadas como un tipo de quimioterapia para tratar varios canceres infantiles. Esta clase de quimioterapia puede en ocasiones afectar el corazón. Antraciclinas usadas comúnmente incluyen: ® ) • Doxorrubicina o Adriamicina (Adriamycin ® Daunorubicina (daunomycin, Cerubidine ) • ® • Idarubicina (Idamycin ) ® Mitoxantrona (Novantrone • ) • Epirubicina (Epirubicin) Terapia a base de Radiación Los problemas cardiacos también pueden ser causados por la terapia con radiación al corazón o a los tejidos alrede - dor del corazón. Esto incluye radiación a las siguientes áreas: • Pecho o tórax (incluyendo las áreas del manto, mediastinales y axilares) • Espina dorsal (porciones en el pecho o “torácicas”) | Version 4.0 | | 10/13 Heart Health Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Página 1 de 7

179 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil • Abdomen • Irradiacion corporal total (TBI) ¿Qué problemas cardiacos pueden ocurrir después del tratamiento para cáncer infantil? Hay varios tipos de problemas cardiacos que pueden resultar a consecuencia del tratamiento de cáncer: • • Las células musculares del corazón pueden ser dañadas de tal manera que el corazón no se contraiga o relaje disfunción del ventrículo izquierdo, cardiomiopatía ). normalmente ( Las sendas eléctricas que conducen impulsos para controlar el ritmo cardiaco pueden ser dañados, resultando • en un pulso cardiaco anormalmente rápido, despacio o irregular ( arritmias ). • Las válvulas y vasos sanguíneos del corazón pueden ser dañados, resultando en válvulas endurecidas o que goteen ( estenosis valvular o insuficiencia ). ). pericarditis La cubierta protectiva del corazón podría inflamarse ( ) o dañarse ( fibrosis pericardial • - enfermedad de las arterias coronar Los vasos sanguíneos del corazón pueden ser dañados o bloqueados ( • ias ), previniendo la entrega de oxígeno y de nutrientes al corazón y a otros tejidos. En casos severos, estos problemas pueden resultar en la muerte del tejido cardiaco (ataque cardiaco o infarto miocardio), un ritmo cardiaco peligroso (arritmia), o en la inhabilidad del corazón de bombear sangre propiamente (insuficiencia cardíaca congestiva). ¿Qué tipos de tratamiento de cáncer son asociados con que problemas cardiacos? • - pueden causar problemas con la función del músculo cardiaco (disfunción ventricular izqui Las antraciclinas erda, cardiomiopatía) y ritmo cardiaco anormal (arritmia). La terapia con radiación puede resultar en el daño y endurecimiento de los tejidos cardiacos, causando un • ritmo cardiaco anormal (arritmias) y problemas con el músculo cardiaco (cardiomiopatía), válvulas cardiacas (estenosis valvular o insuficiencia), vasos sanguíneos (enfermedad de las arterias coronarias), y con la mem - brana alrededor del corazón (pericarditis o fibrosis pericardia). ¿Que otros factores podrían aumentar el riesgo para contraer problemas cardiacos? Hay algunas otras condiciones médicas que podrían incrementar el riesgo de que se presenten problemas cardi - acos por la quimioterapia o la radiación. Estos factores incluyen la obesidad, hipertensión, colesterol o niveles de triglicéridos altos en la sangre, y diabetes. Más aun, podría haber un riesgo más alto de lo común de tener problemas cardiacos si estas condiciones existen en su familia. Las enfermedades cardiacas son también mas comunes en las mujeres que ya han pasado por la menopausia, por lo tanto los sobrevivientes femeninos que han experimentado la menopausia a temprana edad podrían tener un riesgo mayor. Muchas conductas de salud pueden incrementar el riesgo de enfermedad cardiaca incluyendo el fumar, tener un estilo de vida sedentario, y consumir una dieta alta en grasas. ¿Quién esta en riesgo de desarrollar problemas cardiacos? El riesgo de desarrollar un problema cardiaco después del tratamiento de cáncer infantil es relacionado con varios factores: La edad del paciente durante el tiempo que estuvo bajo terapia contra el cáncer • • La dosis total de antraciclina (quimioterapia) • La dosis total de radiación al pecho | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Heart Health | Version 4.0 | 10/13 Página 2 de 7

180 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil La cantidad del tejido cardiaco expuesto a la radiación • Tratamiento con otros medicamentos que afectan la función cardiaca • La presencia de otras condiciones que afectan la función cardiaca • La mayoría de los sobrevivientes de cáncer que fueron tratados con antraciclinas o con radiación al pecho no sufren de daño al corazón . Algunos sobrevivientes tienen cambios en el tamaño o función del corazón muy mínimos que no empeoran a medida que pasa el tiempo. Solo un pequeño número de sobrevivientes han desarrollado problemas - cardiacos severos que ocasionan un fallo cardiaco o un ritmo cardiaco peligroso. En retrospectiva, el riesgo de desar rollar problemas cardiacos después de terminada una terapia para el cáncer infantil es mas alto en los sobrevivientes - tratados con altas dosis de antraciclinas o radiación al pecho, especialmente aquellos que recibieron los dos trata mientos a una edad muy temprana. Ya que no sabemos a ciencia cierta porque algunos sobrevivientes desarrollan problemas cardiacos como resulta - do de su tratamiento para cáncer infantil y otros no (aun cuando han recibido el mismo tratamiento), es importante que cada sobreviviente de cáncer infantil que sea tratado con antraciclinas o con radiación al pecho continúe sus chequeos médicos regularmente para que si un problema cardiaco se presenta, pueda ser detectado y tratado a tiempo. Los factores de riesgo más peligrosos para antraciclinas y radiación son explicados abajo por separado, aunque algunos de los riesgos son los mismos: ¿Cuáles son los síntomas cuando existen problemas cardiacos? Es posible que no se presenten síntomas con problemas cardiacos leves o moderados. Podría ser que la única • manera de identificar el problema sea conduciendo ciertos estudios cardiacos como un ECHO, EKG o MUGA. Respiración corta • Mareos • • Mareado, desmayos o debilidad pronunciada Fatiga severa que impide que uno ejercite o juegue normalmente • Dolor en el pecho que se sienta como si tuviera un peso grande encima y que se extienda a su brazo, mentón o • cara. Sudor en exceso, nausea, o respiración corta acompañado con dolor en el pecho • • Dolor agudo en medio o en el lado izquierdo del pecho (se empeora si respira profundo) • Pies o tobillos hinchados (tan hinchados que si pone presión firme con su dedo en el área hinchada dejara una marca) • Tos o resuello que no desaparece Periodos de corazón acelerado o palpitante. • Periodos de latidos irregulares (como si el corazón saltara un latido) • ¿Cómo es afectado el corazón por el ejercicio? El ejercicio aeróbico (caminar rápidamente, correr) es generalmente seguro y hasta saludable para el corazón. Sin embargo, algunos tipos de ejercicio son particularmente estresantes para el corazón. Estos incluyen actividades . Cuando una persona se agacha para levantar levantamiento de pesas o la lucha isométricas intensas, como el algo muy pesado, el corazón debe trabajar mas duro ya que la presión sanguínea incrementa cuando una persona hace un esfuerzo mayor. Pesas con altas repeticiones (levantar un peso más ligero repetidas veces) es mucho menos | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Heart Health | Version 4.0 | 10/13 Página 3 de 7

181 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil estresante en el corazón y es más probable que sea seguro. El numero de repeticiones debe limitarse a lo que se puede hacer con facilidad. Los sobrevivientes tratados con antraciclinas o con radiación al pecho deberían checar con su proveedor de cuidados - médicos antes de comenzar cualquier programa de ejercicios. El ejercicio isométrico intensivo debe ser general mente evitado. Aquellos que escogen participar en deportes arduos o en deportes a un nivel competitivo alto deberían buscar pautas apropiadas y establecer un plan para ser monitoreados por su cardiólogo. ¿Qué otras condiciones o actividades pueden empeorar los problemas cardiacos? Un corazón afectado por las antraciclinas y la radiación al pecho podría ser incapaz de aguantar el estrés de ciertas condiciones que incrementan dramáticamente el pulso del corazón, la presión sanguínea, o el volumen sanguíneo en el sistema circulatorio. Estos cambios pueden ocurrir durante el embarazo o durante alguna enfermedad con fiebres o calenturas muy altas. Si su tratamiento contra el cáncer incluye medicinas que pueden afectar la función cardiaca, asegúrese que su proveedor de servicios médicos esté informado para que las medidas necesarias para reducir el estrés al corazón sean tomadas. la cocaína, las pastillas para bajar de peso, Algunas drogas pueden incrementar el estrés al corazón, incluyendo ephedra, mahuang, y cualquier otra droga tomada para incrementar el rendimiento . Esta clase de drogas han sido asociadas con un empeoramiento de la función cardiaco y aun la muerte en los sobrevivientes del cáncer infantil que recibieron quimioterapia con antraciclinas. ¿Hay alguna otra precaución especial? - Los sobrevivientes con anormalidades de la válvulas cardiacas (válvulas que gotean o dañadas) o los que tienen ac tualmente activo la enfermedad crónica de injerto contra huesped (cGVHD) siguiendo el transplante hematopoyético (HCT) deberían tomar un antibiótico antes de someterse a cualquier procedimiento dental o algún otro procedimiento medico invasivo (procedimientos como aquellos usados para checar los sistemas respiratorios, gastrointestinales o urinarios) para prevenir una infección cardiaca seria (endocarditis) que puede ser ocasionada por alguna bacteria que entre a la corriente sanguínea durante dichos procedimientos. (Si le ha dicho que tiene una válvula anormal del corazón o si tiene el cGVHD activo, preguntele a su médico, especialista de corazón, y/o al dentista si debe tomar antibióticos para prevenir endocarditis antes de procedimientos médicos o dentales.) ¿Qué clase de monitoreo es requerido para un posible problema cardiaco? Todo aquel que a sido tratado con quimioterapia con antraciclinas o con radiación al pecho para tratar el cáncer infantil debe tener un examen médico con atención especial a cualquier síntoma que este relacionado al corazón. Además, un electrocardiograma (ECG, EKG) debe ser administrado cuando el sobreviviente entre en seguimiento a largo plazo (usualmente 2 años después de que la terapia sea completada). Un ecocardiograma o MUGA también es recomendado en la primera visita del seguimiento a largo plazo, y ser continuado de acuerdo al siguiente horario (o como sea recomendado por su proveedor médico: | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Heart Health | Version 4.0 | 10/13 Página 4 de 7

182 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Horario para Ecocardiogramas o MUGA scans Frecuencia de ECHO or Dosis total de Edad durante* Radiación al pecho recomendada MUGA*** antraciclina** Si Cada año Cualquiera 2 Cada 2 años < 1 año < 200 mg/m No 2 Cada año ≥ 200 mg/m Si Any Cada año 2 Cada 5 años < 100 mg/m 1 to 4 años 2 No Cada 2 años ≥ 100 to < 300 mg/m 2 Cada año ≥ 300 mg/m 2 < 300 mg/m Cada 2 años Si 2 Cada año ≥ 300 mg/m 2 < 200 mg/m Cada 5 años ≥ 5 años 2 No ≥ 200 to < 300 mg/m Cada 2 años 2 ≥ 300 mg/m Cada año *edad durante el primer tratamiento con antraciclinas o con radiación al pecho (cualquiera que fue administrado primero) **basado en la dosis total de doxorubicina (doxorubicin/daunorubicin) o la dosis equivalente con otras antraciclinas ***MUGA scans pueden ser usados para los pacientes que recibieron quimioterapia con antraciclinas pero no radiación; los Ecocardiogramas son los exámenes preferidos para aquellos que recibieron radiación al corazón, ya que el examen provee información mas detallada acerca de problemas estructurales, incluyendo las estructuras de las válvulas. en una dosis de 40 Gy (4000 cGy) o mas alta Los sobrevivientes que recibieron radiación - al corazón o a los teji radiación en una dosis de 30 Gy (3000 cGy) o mas alta mas quimioterapia con antraciclinas dos alrededor o pueden aconsejados a someterse a una evaluación por un cardiólogo para un examen de estrés 5 a 10 años después de recibir radiación, y con evaluaciones repetidas como sea recomendado por el cardiólogo. Los sobrevivientes que recibieron radiación al corazón o a los tejidos alrededor deberían también someterse a un examen de sangre para checar por otros factores de riesgo cardiacos (el perfil de lípidos y glucosa de ayuno o hemo - globina A1C) cada 2 años. Evaluaciones adicionales por un cardiólogo son recomendadas para los sobrevivientes femeninos que están embarazadas o que están planeando un embarazo y recibieron cualquiera de las siguientes terapias: Quimioterapia con antraciclinas con una dosis de 300 mg/m2 o mas • Radiación con una dosis de 30 Gy (3000 cGy) o mas al corazón o a los tejidos alrededor • • Radiación al corazón (cualquier dosis) en combinación con quimioterapia con antraciclina o altas dosis de ® ) ciclofosfamida (Cytoxan Monitoreo del corazón puede ser necesario debido al esfuerzo extra que el corazón debe hacer durante las últimas etapas del embarazo y durante el parto. El monitoreo sugerido incluye un ecocardiograma antes y periódicamente durante el embarazo, especialmente durante el tercer trimestre, y monitoreo cardiaco durante el parto. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Heart Health | Version 4.0 | 10/13 Página 5 de 7

183 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil ¿Como se llevan a cabo los exámenes cardiacos? Un electrocardiograma (ECG, EKG) es un examen usado para evaluar el pulso y ritmo cardiaco. Electrodos (parches - pegajosos pequeños) son posicionados en el pecho, brazos, y piernas. Los electrodos tienen unos cables y los impul sos eléctricos del corazón son grabados. (ultrasonido cardiaco) es usado para examinar la función muscular del corazón y que tan bien Un ecocardiograma - bombea el corazón. La persona se acuesta en una mesa y un gel conductivo es aplicado al pecho. Entonces un trans ducidor (aparato que emite las ondas ultrasónicas) es puesto en el pecho para obtener diferentes vistas del corazón. - Una presión leve es aplicada en el transducidor y por lo tanto esto puede causar incomodidad. Los resultados del ex amen son mostrados en una cinta de video y fotografiados para que el doctor los estudie después. Muchas medidas son llevadas a cabo durante este examen para corroborar que el corazón este bombeando sangre debidamente. El examen de ultrasonido también mira las válvulas del corazón para asegurarse de que abren y cierran normalmente. Los electrodos son usualmente puestos en el pecho para monitorear los impulsos eléctricos del corazón durante el examen. Un (Adquisición múltiple) scan es otra manera de examinar el movimiento del corazón y que tan bien bombea MUGA la sangre al cuerpo. Durante este examen, una cantidad pequeña de un isótopo radioactivo es inyectado en una vena. La persona entonces se acuesta en una mesa y una cámara especial se mueve por encima de la mesa para obtener fotos del movimiento del corazón. Los electrodos son puestos encima del pecho para monitorear los impulsos eléctri - cos del corazón durante el examen. mide la función cardiaco durante periodos cuando el corazón esta trabajando duro. examen cardiaco de estrés Un Durante este examen, el corazón y la presión sanguínea usualmente monitoreados mientras la persona camina en una caminadora. ¿Que sucede si un problema del corazón es detectado? Su proveedor de cuidados médicos le aconsejara acerca del cuidado que necesite. Algunas veces, una referencia a un cardiólogo (especialista del corazón) es necesaria para evaluaciones adicionales y/o tratamientos con medica - mentos. ¿Qué se puede hacer para prevenir los problemas cardiacos? - Con edad avanzada, el riesgo de ciertos tipos de enfermedad cardióloga (como los ataques del corazón y el endu recimiento de las arterias) también aumenta. Los factores que aumentan el riesgo de contraer problemas cardiacos - incluyen fumar, tener sobrepeso, comer una dieta alta en grasas, y no ejercitar. Las condiciones médicas que incre mentan el riesgo incluyen la diabetes, presión sanguínea alta, y colesterol alto en la sangre. Usted puede reducir el riesgo de contraer problemas cardiacos de la siguiente manera: No fumar (o dejar de fumar). • • Mantener un peso saludable. • Limitar el consumo de grasa en su dieta a no mas del 30% de las calorías. Ejercitar moderadamente por lo menos 30 minutos la mayoría de los días de la semana. • Si tiene diabetes, presión alta, o colesterol alto, mantenga estas condiciones bajo control a través de una buena dieta o medicamentos como sea recomendado por su proveedor de salud. Asegúrese de reportar cualquier síntoma de problemas cardiacos a su proveedor de salud. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Heart Health | Version 4.0 | 10/13 Página 6 de 7

184 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Escrito por Debra L. Friedman, MD, ALCANCE para Clínica de Supervivencia, Universidad Vanderbilt/Ingram Cancer Center, Nashville, TN; Melissa Hudson, MD, Después de la Terminación de la Clínica (ACT) de Terapia, Hospital de Investigación de Niños ® , Survivorship Clinic, City of Hope National Medical Center, de St. Jude, Memphis, TN; y Wendy Landier RN, PhD, CPNP, CPON Duarte, CA ® Repasado por Roberta G. Williams, MD; Julie Blatt, MD; Sarah Bottomley, MN, RN, CPNP, CPON , y Joan Darling, PhD. Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation . Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org Nota: A través de esta serie de “ Health Links ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. Advertencia y Notificación de los Derechos de Propiedad Introduccion a los Efectos a largo plazo y las Health Links : El “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ” y las “ Health Links ” que Late Effects Committee and Nursing Discipline Children’s Oncology Group en colaboración con el comité de . lo acompañan fueron creados y desarrollados por el : La información y el contenido de cada documento o series de documentos que han sido creados por el relacionados con los efectos a largo Children’s Oncology Group Para propositos informativos Health Link ” o con el titulo de “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ ”, ya sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) : Por favor busque el consejo medico o de algún otro proveedor de salud calificado es una organización de dedicada con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El Children’s Oncology Group a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. A los doctores y otros proveedores de salud : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi - ente de cáncer infantil. El Children’s Oncology Group reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el , o cualquier otra institución o miembro de el Children’s Oncology Group Children’s . Oncology Group ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi Children’s Oncology Group : Aunque el Ningún reclamo en cuanto a la competencia - cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. Children’s Oncology Group : Ninguna obligación es asumida Children’s Oncology Group y sus afiliados a indemnizar. Esto protege al No hay obligacion o consenso de parte del y sus afiliados por el Children’s Oncology Group sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni - Children’s Oncology zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del Group y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Derechos de Propiedad Children’s Oncology Group El retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora Children’s Oncology Group a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el tomando alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Heart Health | Version 4.0 | 10/13 Página 7 de 7

185 Introduction to Long-Term Follow-Up Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Introducción a la Transición de Cuidado de Término Largo Después del Tratamiento para el Cáncer de Niños, Adoles - centes, o Adultos Jóvenes ¡Felicidades! Usted se a “graduado” al seguimiento a largo plazo. ¡Usted ya se puede considerar un sobreviviente de cáncer y no un paciente de cáncer! En el seguimiento a largo plazo, la meta es ayudarle a mantenerse lo mas saludable posible para que esté bien y pueda enfocarse bien en la escuela, o en el trabajo. Aunque sea usted un sobreviviente de cáncer, todavía es importante que usted continué recibiendo su cuidado médico regular. En ciertas ocasiones, su cuidado será continuado en el mismo hospital o clínica en donde recibió su tratamiento, pero posiblemente será visto por diferentes doctores y enfermeras en un programa especial para segui - miento a largo plazo. En otras ocasiones, usted recibirá cuidado de un proveedor de salud trabajando con su centro de tratamiento o de un proveedor que esta más cerca de su casa. No importa en donde reciba su cuidado, lo que es importante es que aprenda lo que usted necesita saber sobre su tratamiento y el cuidado que necesita para manten - erse en la mejor salud posible. Resúmen de su tratamiento de cáncer Cuando se gradué al tratamiento de término largo, es importante que usted reciba un antecedente del tratamiento que recibió para el cáncer. Este antecedente, llamado Resúmen de Tratamiento de Cáncer , debe contener la infor - mación siguiente: enfermedad que tuvo, la fecha que recibió la diagnosis, y el lugar de la enfermedad • El nombre de la Fechas y descripciones de cualquiera recaídas – – Nombre, domicilio, y número de teléfono del hospital(es) o clínica(s) en donde recibió su cuidado Nombre, domicilio, y número de teléfono de su doctor de cáncer (oncólogo) y otros miembros del equipo de – salud responsables por su cuidado. – Fecha que su tratamiento para el cáncer fue completado • Nombres de las medicinas de quimioterapia que recibió e información específica de las medicinas de quimi - oterapia, como lo siguiente: – Dosis total de quimioterapia antraciclina (como Doxorrubicina y Daunorubicina) – Para Citarabina y Metotrexato: Como fueron administradas (oral o intravenoso IV), y si lo recibió a la vena, 2 recibió una “dosis alta” (1000 mg/m o mas en una dosis) o terapia de “dosis estándar” – Para Carboplatina: Si las doces fueron dadas en preparación para el transplante de la medula ósea, sangre del cordón umbilical, o transplante de célula madre y si cualquier carboplatino fue dado antes de un año de edad. – Dosis total de otros tipos de quimioterapias y como fueron administrado, si son disponibles. • Resumen de su Terapia de Radiación , incluyendo – Parte del cuerpo en donde recibió esta radiación – Dosis total de radiación que recibió • Nombres y fechas de cirugías que tuvo. | Version 4.0 Introduction to Long-Term Follow-Up | Página 1 de 4 10/13 | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial.

186 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil (medula ósea, célula madre, o sangre del cordón transplante de células hematopoetica Si recibió o no un • umbilical), y es así, si o no desarrollo la enfermedad crónica del injerto contra huésped (cGVHD). - que recibió (como terapia de radioodo y bio-imunotera • Nombres de otros tipos de tratamientos de cáncer pia) complicaciones - • Nombres y fechas de significantes, y tratamientos que recibió como resultado de estas com plicaciones. Mantenga una copia de su resumen de tratamiento de cáncer que recibió en un lugar seguro, y déle una copia a cada uno de sus proveedores médicos. Itinerario de su Seguimiento a Largo Plazo Varios sobrevivientes de cáncer necesitan visitas de seguimiento a largo plazo una ves al año. Durante estas visitas, es importante hablar de su progreso y revisar problemas que pueden suceder después que uno recibió tratamiento para el cáncer. Hable con su proveedor médico sobre su situación individual y determine un itinerario para su cuidado de seguimiento a largo plazo que mejor sirva para sus necesidades. Entre Visitas Cuando se “gradue” al cuidado de seguimiento a largo plazo, tendrá que identificar un médico a quien podrá visitar o llamar si se enferma o sufre una herida. Haga una cita con este médico para que lo conozca antes que se enferme. Si surge un problema relacionado a su tratamiento de cáncer, su médico puede hablar sobre esto con su equipo de cuidado de seguimiento a largo plazo. Efectos secundarios después del tratamiento para el cáncer infantil, adolescentes o adultos jóvenes Problemas que resultan después del tratamiento de cáncer son llamados “efectos secundarios”. Afortunadamente, muchos de los sobrevivientes de cáncer no tienen efectos serios, pero es importante diagnosticar problemas lo más pronto posible. Posiblemente usted ya aprendió de los efectos secundarios que pueden ocurrir después del trata - miento de cáncer. Unos de los más comunes efectos son repasados aquí: Crecimiento - El tratamiento de cáncer infantil, especialmente radiación al cerebro o la espina dorsal, varias veces afecta el cre cimiento de niños. Medidas cada año pueden ayudar a predecir si usted alcanzará una estatura normal. Si esta “en - riesgo” de ser bajo en estatura como adulto, su médico puede recomendar otros exámenes especiales o tratamien tos. Corazón Un pequeño porcentaje de sobrevivientes que son tratados con radiación al pecho o con ciertas quimioterapias conocidas como “antraciclinas” (como Doxorrubicina y Daunorubicina) tienen problemas con el corazón. Esto ocurre mas frecuentemente con personas que reciben dosis altas de estas medicinas y quienes reciben estos tratamientos antes que su corazón termine de crecer. Su médico puede recomendar exámenes para que revisen la función de su corazón y pueden arreglar que vea un cardiólogo (especialista del corazón) para que vean si los exámenes indican si hay problemas. Fertilidad Radiación al pelvis y ciertas drogas de ante-cáncer pueden afectar el desarrollo sexual y reproducción. Unos sobre - vivientes pueden estar a riesgo de una pubertad retrasada, infertilidad (incapacidad de tener hijos), o menopausia | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Introduction to Long-Term Follow-Up | Version 4.0 | 10/13 Página 2 de 4

187 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil prematura. Revisiones médicas y ciertos tipos de exámenes de sangre pueden ayudara determinar si usted tiene uno - de estos problemas. Esto es importante, y si tiene preocupaciones, hable con su médico sobre esto. Si hay prob lemas, arreglos serán hechos para que usted vea un especialista. Tiroides Radiación a la cabeza y al cuello puede causar, a veces, que el tiroides ya no funcione apropiadamente. Esta glándula regula el crecimiento, peso, y balance de las químicas en el cuerpo. Exámenes de sangre pueden ser hechos para revisar los niveles de las hormonas del tiroides. Bajos niveles de hormonas del tiroides son facilmente ser tratados con medicamento oral. Canceres Secundarios Algunas drogas de quimioterapia y radiación pueden aumentar el riesgo de cánceres secundarios. Algunos sobre - vivientes de cáncer pueden tener cambios genéticos que los ponen en riesgo de desarrollar cánceres secundarios. Tabaco, demasiada exposición al sol, y otros químicos y comportamientos pueden aumentar este riesgo. Hable con su médico de modos de disminuir su riesgo y detectar el cáncer temprano. La Escuela y Trabajo Problemas con la escuela o el trabajo pueden ocurrir como resultado de ciertos tipos de tratamientos de cáncer. Psicólogos pueden trabajar con su escuela para asegurarse que faciliten cambios para necesidades especiales. Tam - bién puede haber ayuda financiera para su educación o entrenamiento de trabajo dada por programas del gobierno. Trabajadoras sociales le pueden explicar sobre estos programas. Moviendo hacia el futuro Pensando en la posibilidad de tener efectos secundarios después de sobrevivir el cáncer puede causar ansiedad. - Pero es posible que NO vaya a desarrollar ningunas complicaciones serias. Y si acaso las tiene, es mejor diagnosti carlas temprano, para que pueda empezar un tratamiento lo mas pronto posible. No deje que su ansiedad lo detenga para obtener el mejor cuidado para su salud. Haber tenido cáncer a una edad temprana siempre es una experiencia difícil. Como resultado de haber sobrevivido esa experiencia, usted ha aprendido muchas cosas. Lo más probable es que usted sea una persona más fuerte de lo - que era cuando lo diagnosticaron con cáncer. Ahora que se mueve hacia su futuro, use esas fuerzas para su venta ja. Haga decisiones saludables. Mantenga sus citas con el médico para su cuidado de seguimiento a largo plazo. ¡Y siempre recuerde que USTED es el miembro más importante de su equipo médico! ® - , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Por Escrito por Wendy Landier RN, PhD, CPNP, CPON Introduction to the After Completion of Therapy Clinic ciones adapatadas de “ ,” St. Jude Children’s Hospital, Memphis, TN, usado con permiso. Revisado por Melissa M. Hudson, MD; Smita Bhatia, MD, MPH; y Scott Hawkins, LMSW. Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous . support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Introduction to Long-Term Follow-Up | Version 4.0 | 10/13 Página 3 de 4

188 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org Nota: A través de esta serie de “ Health Links ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. Advertencia y Notificación de los Derechos de Propiedad : El “ Health Links ” que Health Links ” y las “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduccion a los Efectos a largo plazo y las Late Effects Committee and Nursing Discipline lo acompañan fueron creados y desarrollados por el Children’s Oncology Group en colaboración con el comité de . relacionados con los efectos a largo Children’s Oncology Group Para propositos informativos : La información y el contenido de cada documento o series de documentos que han sido creados por el ”, ya ” o con el titulo de “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ Health Link sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. : Por favor busque el consejo medico o de algún otro proveedor de salud calificado A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) es una organización de dedicada Children’s Oncology Group con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. A los doctores y otros proveedores de salud : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi - ente de cáncer infantil. El Children’s Oncology Group reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. Children’s Oncology Group Children’s , o cualquier otra institución o miembro de el Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el . Oncology Group Ningún reclamo en cuanto a la competencia : Aunque el - ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi Children’s Oncology Group cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. Children’s Oncology Group : Ninguna obligación es asumida Children’s Oncology Group y sus afiliados a indemnizar. Esto protege al No hay obligacion o consenso de parte del y sus afiliados por el Children’s Oncology Group sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni - Children’s Oncology zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del Group y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Derechos de Propiedad retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora El Children’s Oncology Group Children’s Oncology Group a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del Children’s Oncology Group tomando en adelante usted esta de acuerdo en ayudar a el alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Introduction to Long-Term Follow-Up | Version 4.0 | 10/13 Página 4 de 4

189 Reducing Risk of Cancers Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Reducir el Riesgo de Cánceres Secundarios Sabiendo el riesgo de desarrollar un cáncer secundario puede provocar frustración y ansiedad. Después de su batalla con cáncer infantil, lo último que usted quiere ser recordado es el riesgo de desarrollar un cáncer secundario du - rante la edad adulta. Por muchas razones, el riesgo de cáncer aumenta con la edad para todos. Varios estudios han mostrado que cuando sobrevivientes de cáncer infantil llegan a ser adultos, ellos tienen el riesgo un poco más alto de desarrollar (un segundo) cáncer comparado a personas de la misma edad en la población general. Las cosas que pueden contribuir a este riesgo son la edad de la persona durante la terapia del cáncer, su tratamiento específico, su genética y la historia de la familia. ¿Quién tiene el riesgo del cáncer secundario? . Algunos tratamientos para el cáncer infantil • Las personas que recibieron ciertas drogas de quimioterapia aumentan el riesgo de cánceres secundarios. Raramente, las personas pueden desarrollar la leucemia mieloide aguda después del tratamiento. Leucemia secundaria ocurre generalmente, si sucede, dentro de los primer - os 10 años después del tratamiento del cáncer original. El riesgo de desarrollar una leucemia secundaria es aumentada para personas que fueron tratadas con dosis altas de agentes alquilante (como ciclofosfamida o mostaza nitrógenada), epipodofilotoxinas (como etopósido o teniposida), y las drogas de quimioterapia antrac - iclina (como doxorrubicina y daunorubicina), y para los que recibieron un trasplante de células hematopoyéticas autólogo (HCT). • . La radioterapia adminis - Las personas que recibieron la radioterapia, especialmente a una edad joven trada para el cáncer infantil aumenta el riesgo de desarrollar un tumor sólido secundario cuando una persona envejece. Los sitios más comunes incluyen la piel, el seno, el sistema nervioso central (el cerebro y espinazo), glándula de tiroides, y los huesos. Comparable a las leucemias secundarias, los tumores sólidos secundarios aparecen más común 10 o más años después del tratamiento. El riesgo de desarrollar un tumor sólido secund - ario es aumentado cuándo radiación es entregada en dosis altas y sobre un área grande a los niños de menor edad. • Las personas que tienen una historia del cáncer en su familia . Algunos pacientes de cáncer han heredado los cambios de genes (mutaciones) que aumenta las posibilidades de desarrollar un cáncer secundario. Gen - eralmente, estos cambios genéticos son relativamente raros y son responsable por menos de 10 por ciento de los pacientes con cáncer. Los doctores sospechan la presencia de un gene del cáncer cuando los antecedentes familiares muestran múltiples casos de cáncer entre los jóvenes en cada generación, o cuándo cáncer ocurre en un par de órganos (como los ojos, los senos, los riñones, etc.) Si usted tiene cualquier pregunta o piensa que el cáncer es heredado en su familia, usted debe hablar con su doctor. Una revisión de su historial médico de la familia dirá si necesita orientación genética o una prueba genética. ¿Está en un grupo de alto riesgo? Usted puede descubrir si tiene el riesgo más alto para desarrollar un cáncer secundario si revisa su tratamiento del cáncer y su historial médico de las familia con su proveedor de salud o un oncólogo. En algunos casos, la detección temprana o mas frecuente podría ser recomendada para aumentar la probabilidad de la detección de un cáncer secundario en una etapa lo suficientemente temprana como para realizar un tratamiento exitoso. Es importante que usted consiga las pruebas de detección temprana que son recomendadas para usted. | Reducing Risk of Cancers Página 1 de 4 10/13 | | Version 4.0 Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial.

190 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil ¿Qué observación es recomendado? Manténgase saludable, observándose el cuerpo con cuidado para notar cualquier cambio que ocurra. Ese aumenta la - Todos los sobrevivientes de cáncer infantil deben tener un examen com detección de cualquier problema temprano. pleto anual de la salud . También, usted debe tener las pruebas para detectar el cáncer, basadas en su edad, el sexo, y Sabiendo los detalles de su historial médico, incluyendo los tratamientos de quimioterapia, la historia del tratamiento. radiación, y cirugía, es importante para su salud . El hospital o la clínica donde usted recibió su tratamiento del cáncer deben tener esta información disponible para usted y su proveedor de salud. Hablando con su proveedor de salud que conoce su tratamiento historial, los riesgos de complicaciones tarde, y las recomendaciones para la detección temprana mejorará las oportunidades de encontrar cualquier problema en una etapa temprana, cuando están más tratables. ¿Los síntomas que debe reconocer como algo importante? Informe al su proveedor de salud algún síntoma nuevo o persistente inmediatamente. Los síntomas que usted debería reportar: Hemorragia o moretones que ocurren con facilidad • • Palidez en la piel Cansancio/fatiga excesiva • Dolor en los huesos • Cambios en lunar(es) • • Llaga que no se cura Bultos • • Dificultad para tragar • Cambio en el hábito de evacuación • Dolor persistente en el abdomen Sangre en el excremento • • Sangre en la orina • Dolor al orinar o cambios en los hábitos del intestino • Tos persistente o ronquera Dificultad para respirar/ falta de aire • Sangre en la flema • Cambio en el color de la piel o una llaga en la boca que no se cura • • Dolor persistente de cabeza • Cambio de visión • El vómito persistente por la madrugada ¿Qué puede hacer para bajar el riesgo de un cáncer secundario? Sobreviventes no deben fumar o mascar tabaco y debe evitar el Evite los hábitos que pueden causar el cáncer. humo de las personas que fuman a su alrededor. Los cánceres de piel son unos de los cánceres secundarios más comunes después del cáncer infantil, especialmente por los que fueron tratados con radiación. Por eso, usted debe | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Reducing Risk of Cancers | Version 4.0 | 10/13 Página 2 de 4

191 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil cuidarse bien y evitar los rayos dañinos del sol. Use el protector solar (una crema filtrante de la radiación solar) que tiene un factor de protección solar de 15 (SPF, en inglés) o más, use ropa para proteger la piel, evite el sol del medi - odía (de 10 a 2 de la tarde) cuando los rayos del sol son más intenso, y no use lámparas ni camas solares. . Beber mucho alcohol, aún mayor si también fuma, sube el riesgo de cáncer de Beber alcohol con moderación boca, garganta, y esófago. El riesgo de cáncer de seno sube para mujeres que consuman alcohol. Debe limitar la cantidad de alcohol que se ingiere para reducer estos riesgos de cancer, y disminuir la posibilidad de otros problemas como la enfermedad hepática. Comer bien . Una dieta rica en grasas lleva el riesgo de varios tipos de cáncer. Las personas que comen una dieta rica en grasas tienen mayor riesgo de padecer cáncer de colon; también para el cáncer de seno y de próstata. Una dieta rica en grasas es asociada también con la obesidad, la enfermedad cardíaca, y otros problemas de la salud. Para reducir estos riesgos, el consumo de alimentos ricos en grasa debe ser limitado a 30% o menos de sus calorías totales. - Alimentos ricos en fibra están en granos enteros, varios tipos de verduras, y de ciertas frutas. La fibra reduce el tiem po que toma las heces para pasar por el tracto intestinal. Los alimentos ricos en fibra suelen estar bajos en grasas. - La verdura crucífera que comen ayuda también a reducir el riesgo del cáncer. La verdura crucífera incluye la col, re pollitos de Bruselas, el brócoli, y la coliflor. Comiendo estas verduras podrían protegerse contra el cáncer. Las sustan - cias en las verduras bloquean los daños causados por otros alimentos que tienen químicas cancerígenas. La verdura crucífera también contiene mucha fibra y es bajo en grasa. Estos alimentos sanos deben ser incluidos en la dieta. Unas químicas que son usadas en comida preservada son carcinogénicas y pueden causar el cáncer. Dietas con mucha sal y carnes que contienen preservativos, como nitratos pueden aumentar el riesgo de cáncer en el estoma - go o esófago. Muchas de estas comidas, como la carne, tienen mucha grasa. Comidas como estas se deben comer raramente y en pequeñas porciones. Dietas ricas con vitaminas C y A han enseñado, en estudios de animales, que reducen el riesgo de cáncer. Hay menos - probabilidad en personas con dietas que tienen mucha vitamina C de tener cáncer, especialmente cáncer del es tomago y esófago. La mejor manera de obtener estos nutrientes es comer muchas frutas frescas y vegetales. Frutas cítricas, melones, vegetales. Una buena fuente de vitamina A se puede encontrar en vegetales de verde oscuro o amarillo y en ciertas frutas. Si su dieta esta baja en vitaminas, un suplemento de vitaminas le puede ayudar, pero evita doces altas, por que pueden causar efectos secundarios. . Ciertos tipos de cáncer se asocian a infecciones prevenibles. Dos de los más comunes son la hepatitis B Vacúnese y el virus del papiloma humano (VPH). Las vacunas están disponibles para proteger contra estos virus causantes de cáncer. Consulte con su proveedor de atención médica para determinar si se recomienda alguna de estas vacunas para usted. - Empiece hoy en tomar tiempo de revisar sus hábitos de salud, y practique comportamientos saludables que le ayuda ran a mantener el riesgo de tener cáncer secundarios a un mínimo. Escrito por Melissa M. Hudson, MD, Después de la terminación de la Clínica (ACT) de Terapia, Hospital de Investigación de Niños de St. Jude, Memphis, TN; y Allison Hester, RN, MSN, CPNP, El Hospital de Niños de Arkansas, Little Rock, AR. Las porciones se adaptaron del boletín de Noticias de CCSS, Otoño 1999 y Invierno 2001, usadas con permiso. ® Revisado por Smita Bhatia, MD, MPH; Debra Friedman, MD; Fran Wiley, RN, MN; y Jill Meredith RN, BSN, OCN | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Reducing Risk of Cancers | Version 4.0 | 10/13 Página 3 de 4

192 Health Link Viviendo Saludable Después del Tratamiento para el Cáncer Infantil Traducido por Yulsi Fernandez, BS y Sonia Morales, BS, Escuela de Medicina de David Geffen en UCLA, a través del generoso apoyo del Programa de Desarrollo de Facultad Médica de Harold Amos, han recibido fondos de la Fundación de Robert Wood Johnson. Translated by Yulsi Fernandez, B.S. and Sonia Morales, B.S., David Geffen School of Medicine at UCLA, through the generous support of the Harold Amos Medical Faculty Development Program, funded by the Robert Wood Johnson Foundation . Información adicional para sobrevivientes del cáncer infantil esta disponible en www.survivorshipguidelines.org Health Links A través de esta serie de “ Nota: ,” el termino “cáncer infantil” es usado para designar cánceres pediátricos que pueden ocurrir durante la niñez, adolescencia o juventud. Las Health Links son diseñadas para dar información a sobrevivientes del cáncer pediátrico ya sea que el cáncer haya ocurrido durante la niñez, adolescencia o juventud. Advertencia y Notificación de los Derechos de Propiedad : El “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ” que Health Links Introduccion a los Efectos a largo plazo y las Health Links ” y las “ lo acompañan fueron creados y desarrollados por el Children’s Oncology Group en colaboración con el comité de Late Effects Committee and Nursing Discipline . relacionados con los efectos a largo : La información y el contenido de cada documento o series de documentos que han sido creados por el Children’s Oncology Group Para propositos informativos Health Link ”, ya ” o con el titulo de “ Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers plazo del tratamiento y cuidado del cáncer o conteniendo el titulo “ sea en formato escrito o electrónico (incluyendo todo formato digital, transmisión por correo electrónico, o descargado de la página de internet), será conocido de ahora en adelante como “Contenido Informativo”. Todo Contenido Informativo debe ser usado con el propósito de informar solamente. El Contenido Informativo no debe sustituir el consejo medico, cuidado medico, diagnosis o tratamiento obtenido de un doctor o un proveedor de salud. : Por favor busque el consejo medico o de algún otro proveedor de salud calificado A los Pacientes que sufren de Cáncer (si son menores de edad, a sus padres o guardianes legales) Children’s Oncology Group es una organización de dedicada con cualquier pregunta que tenga acerca de alguna condición de salud y no se base solamente en el Contenido Informativo. El a la investigación medica y no provee de ningún tratamiento o cuidado medico al individuo. : El Contenido Informativo no esta diseñado para sustituir su juicio clínico independiente, consejo medico, o para excluir otro criterio legitimo A los doctores y otros proveedores de salud para la detección, consejería, o intervención para complicaciones específicas o el tratamiento del cáncer infantil. Asimismo el Contenido Informativo no debe excluir otras alternativas razonables a los procedimientos de cuidado de salud. El Contenido Informativo es proveído como una cortesía, pero no debe ser usado como la única guía en la evaluación de un sobrevivi - ente de cáncer infantil. El Children’s Oncology Group reconoce que ciertas decisiones concernientes al paciente son la prerrogativa del paciente, su familia, y su proveedor de salud. Children’s Oncology Group , o cualquier otra institución o miembro de el Children’s Ningún respaldo de exámenes, productos, o procedimientos específicos es hecho en el Contenido Informativo, el Oncology Group . Children’s Oncology Group : Aunque el Ningún reclamo en cuanto a la competencia ha hecho todo lo posible por asegurar que el Contenido Informativo sea correcto y este completo cuando es publi - cado, ninguna garantía o representación, expresa o implicada, es ofrecida en cuanto a la certeza o relevancia del dicho Contenido Informativo. Children’s Oncology Group : Ninguna obligación es asumida Children’s Oncology Group y sus afiliados a indemnizar. Esto protege al No hay obligacion o consenso de parte del y sus afiliados por el Children’s Oncology Group sus afiliados o miembros por daños que sean el resultado del uso, revisión, o acceso al Contenido Informativo. Usted esta sujeto a los siguientes términos de indemni - Children’s Oncology zación: (i) “Agentes Indemnizados” incluye a los autores y contribuidores al Contenido Informativo, todos los oficiales, directores, representantes, empleados, agentes y miembros del Group y sus afiliados; (ii) A usar, revisar o acceder el Contenido Informativo, usted esta de acuerdo, a indemnizar, con sus recursos, defender y proteger de todo daño a los Agentes Indemnizados de toda perdida, obligación, o daños (incluyendo el costo de abogados) resultando de cualquier y todos los reclamos, causas de acción, demandas, procedimientos, o demandas relacionadas a o a causa de la revisión o acceso al Contenido Informativo. : El Contenido Informativo esta sujeto a protección bajo las leyes de copyright y otras leyes que protegen la propiedad intelectual en los Estados Unidos y en el mundo entero. Derechos de Propiedad retiene los derechos de copyright exclusivos y otros derechos, títulos, e intereses al Contenido Informativo y reclama todos los derechos de propiedad bajo la ley. De ahora El Children’s Oncology Group Children’s Oncology Group a asegurar todos los derechos de copyright y propiedad intelectual para el beneficio del Children’s Oncology Group en adelante usted esta de acuerdo en ayudar a el tomando alguna acción adicional en una fecha futura, acciones que incluyen firmar formas de consentimiento y documentos legales que limitan diseminación o reproducción del Contenido Informativo. | Derechos reservados 2013 © Children’s Oncology Group. Todos los derechos son reservados mundial. Reducing Risk of Cancers | Version 4.0 | 10/13 Página 4 de 4

193 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Le Cancer du Sein Suite au Traitement d’un Cancer Pédiatrique : Êtes-Vous a Risque ? Après avoir été traitée pour le cancer lors de votre enfance, votre adolescence ou le début de l’âge adulte, cette - épreuve est maintenant derrière vous et cède aujourd’hui sa place à un avenir rempli d’espoir, de rêves et de pro jets. Ainsi, la dernière chose dont vous voulez entendre parler est le risque de développer un nouveau cancer à l’âge adulte. Cependant, chez tout le monde et pour de nombreuses raisons, le risque du cancer augmente avec l’âge. Dépendamment du traitement particulier que vous ayez reçu, vous pourriez avoir un risque plus élevé de développer le cancer du sein. Ainsi, il est important de bien comprendre ce risque, afin de prendre une part active au bon main - tien de votre santé. Quels sont les facteurs de risque ? les femmes ayant reçu de la radiothérapie au thorax dans le cadre d’un Plusieurs études ont démontré que présentent un risque traitement contre le cancer pendant l’enfance, l’adolescence ou le début de l’âge adulte relié à la dose plus élevé que les autres femmes de développer le cancer du sein, l’âge avançant. Ce risque est . Plus la dose de radiothérapie était élevée, plus le risque augmente. Les chercheurs se de radiothérapie reçue penchent présentement sur ce problème dans l’espoir de mieux comprendre les facteurs de risque et les moyens de prévenir le développement d’un cancer secondaire du sein. Il existe pour le développement du cancer du sein qui s’appliquent à toutes les d’autres facteurs de risque connus femmes, pas uniquement à celles qui ont reçu de la radiothérapie au thorax. Ces facteurs de risque comprennent: • Menstruation précoce (avant l’âge de 12 ans) Ménopause tardive (après l’âge de 55 ans) • Premier enfant après l’âge de 30 ans ou ne jamais avoir eu d’enfants • Antécédent familial de cancer du sein • • Surpoids Mode de vie sédentaire (peu d’activité physique ou d’exercice pratiqué régulièrement) • pour le cancer du sein : facteurs de risque possibles Autres Alimentation riche en matières grasses • Consommation abusive d’alcool • Ne jamais avoir allaité • • Tabagisme • Prise de contraceptifs oraux Hormonothérapie substitutive sur une longue période de temps • Quand est-ce que le cancer du sein pourrait se manifester ? Le risque de développer un cancer secondaire du sein commence à augmenter entre cinq et neuf ans après la fin des traitements de radiothérapie et continue à s’accroitre par la suite. Cela veut dire qu’une femme ayant reçu une | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Breast Cancer | Version 4.0 | 10/13 Page 1 de 4

194 Health Link Vivre en santé après le traitement pour un cancer pédiatrique radiothérapie au thorax pour traiter un cancer durant l’enfance ou l’adolescence risque de développer le cancer du sein à un plus jeune âge (habituellement vers 30 ou 40 ans) qu’une femme qui développe un cancer du sein primaire (habituellement à l’âge de 50 ans et plus). Que puis-je faire pour me protéger ? Tout d’abord, il est important de noter que la plupart des femmes ayant reçu de la radiothérapie au thorax pendant l’enfance, l’adolescence ou le début de l’âge adulte ne développeront le cancer du sein. Cependant, il demeure PAS important de comprendre que si vous avez reçu de la radiothérapie au thorax, le risque EST plus élevé pour vous que pour toute autre femme de votre âge n’ayant jamais reçu d’irradiations. Ainsi, la meilleure façon de vous protéger est de surveiller vos seins de près. Avec un bon suivi, si un cancer se développait, il pourrait être décelé au plus tôt (stade précoce), c’est-à-dire à un moment où les traitements ont le plus de chances de succès. Il est également important d’informer votre médecin de vos traitements contre le cancer, y compris la dose de radiothérapie reçue au niveau du thorax. Il est d’ailleurs fortement recommandé de fournir à votre médecin une copie du résumé des associée, présentement disponible en anglais seulement, « Health Link traitements anticancéreux reçus (voir la fiche »). Introduction to Long-term Follow-up Quel est le suivi recommandé ? à une dose de 20 Gy Si vous avez reçu de la radiothérapie au thorax - * pendant l’en ou plus (2000 cGy ou 2000 rad) fance, l’adolescence, ou le début de l’âge adulte, les recommandations particulières sont les suivantes : - : une fois par mois, soit quelques jours suivant les menstruations. S’il y a lieu, rappor 1. Auto-examen des seins tez à votre médecin tout changement ou toute masse palpable dans les plus brefs délais. 2. effectué par votre médecin : au moins une fois par an jusqu’à l’âge de 25 ans; par Examen clinique des seins la suite, tous les 6 mois. : tous les ans, à partir du dernier Mammographie et imagerie par résonance magnétique (IRM) des seins 3. en date, soit l’âge de 25 ans ou 8 ans après la dernière séance de radiothérapie. *À noter : il faut ajouter au calcul la dose d’irradiation corporelle totale reçue, s’il y lieu. Si votre médecin n’est pas familier avec les recommandations de suivi ci-dessus pour les femmes ayant reçu de la radiothérapie au thorax pendant l’enfance, l’adolescence, ou le début de l’âge adulte, nous vous invitons à lui faire pour plus d’information. part de cette fiche santé et du site web www.survivorshipguidelines.org Et si j’ai reçu une dose moins forte au thorax ou en irradiation corporelle totale ? Si vous avez reçu une faible dose de radiothérapie au thorax (moins que 20 Gy ou 2000 rad, incluant la dose d’irra - diation corporelle totale, s’il y lieu), ou si vous avez reçu uniquement de l’irradiation corporelle totale, il est possible que votre risque de cancer du sein soit moins élevé que pour celles qui ont reçu une plus forte dose de radiothérapie. Pourtant, il demeurerait peut-être plus élevé que pour la population générale. Il est recommandé de vous entretenir avec votre médecin concernant le dépistage du cancer du sein. Ensemble, vous pourriez décider si un dépistage précoce serait indiqué dans votre cas. Y a-t-il autre chose que je pourrais faire pour diminuer le risque ? Quelques changements dans votre mode de vie pourraient aider à diminuer le risque de développer le cancer du sein et vous garder en santé. Ils sont les suivants : • Manger plus de fruits et légumes (on recommande un minimum de 5 portions par jour). • Faire de l’exercice physique au moins 30 minutes par jour, et ceci presque tous les jours. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Breast Cancer | Version 4.0 | 10/13 Page 2 de 4

195 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Si vous avez du surpoids, perdre du poids. • Limiter la consommation d’alcool (une consommation par jour maximum). • Si vous fumez, cesser de fumer. • Si vous avez un jour un bébé, essayer de l’allaiter pendant au moins quatre mois. • • Si vous avez besoin d’hormonothérapie substitutive ou de contraceptifs oraux, en parler avec votre médecin, afin de revoir les bénéfices et les risques. • Minimiser l’exposition aux pesticides et aux produits chimiques nuisibles. Si votre milieu de travail comporte des produits chimiques, utiliser du matériel protecteur. Si vous avez quelque question que ce soit à propos de votre risque de développer un cancer du sein, n’hésitez pas à en parler à votre médecin. Mieux vaut discuter avec lui des meilleurs moyens de vous protéger. Écrit par Dr Melissa M. Hudson, MD, After Completion of Therapy Clinic, St. Jude Children’s Research Hospital, Memphis, TN, ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA, USA. Certaines et Wendy Landier, RN, PhD, CPNP, CPON sections adaptées de CCSS Newsletter, hiver 2001, avec permission. Révisé par Dr Jacqueline Casillas, MD, Dr Smita Bhatia, MD, MPH, Dr Louis S. Constine, MD, Dr Debra Friedman, MD, et Fran Wiley, RN, MN. Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org www.cancer.ca La société canadienne du cancer, L’Encyclopédie canadienne du cancer, http://info.cancer.ca/cce-ecc Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge Noter: adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété Health Introduction to Late Effects Guidelines et Health Links: « » ainsi que les fiches « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le Links : Le terme « Contenu informatif » désigne Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, », que ce soit sous forme électronique ou imprimée (y compris tout ou intitulé « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health Link » ou « format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. À l’attention des médecins et autres professionnels de la santé : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. Aucune garantie d’exactitude ni d’exhaustivité : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Breast Cancer | Version 4.0 | 10/13 Page 3 de 4

196 Health Link Vivre en santé après le traitement pour un cancer pédiatrique - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa - gy Group et parties liées tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Breast Cancer Page 4 de 4 | 10/13 | Version 4.0

197 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Cataractes Suite au Traitement d’un Cancer Pédiatrique Les traitements du cancer chez l’enfant comportent parfois des médicaments ou de la radiothérapie qui peuvent augmenter le risque de cataractes. Comme la vision a un impact majeur sur la vie quotidienne, il est important que les personnes ayant reçu ces traitements se fassent examiner régulièrement les yeux. Une cataracte, c’est quoi ? - La lentille de l’oeil, qu’on appelle le cristallin, est normalement transparente. Le mot « cataracte » désigne un cristal lin devenu opaque. La cataracte se développe lentement, mais au fur et à mesure que l’opacité progresse, la vue peut être affectée. Comment est-ce que la cataracte affecte la vue ? - L’oeil est un organe formidable, permettant la conversion des rayons lumineux en impulsions. Ces impulsions trans mettent des messages au cerveau, qui les interprète et en perçoit une image. Tout d’abord, la lumière entre dans . La cornée fait dévier la lumière vers une l’oeil en passant par un dôme de tissu transparent qu’on appelle la cornée . La pupille contrôle combien de lumière entre dans l’oeil. Derrière la pupille se pupille ouverture au centre de l’oeil, la rétine , c’est-à-dire la membrane située trouve le cristallin , qui fait la mise au point et fait converger la lumière sur la au fond de l’oeil. Les cellules nerveuses de la rétine transforment la lumière en impulsions électriques, qui vont vers , l’image à la rétine . Lorsque le nerf optique le cerveau via le cristallin s’opacifie (la présence d’une cataracte) devient floue. Cristallin Quels sont les symptômes d’une cataracte ? Rétine Une cataracte se caractérise souvent par les symptômes suivants : Pupille • Vision floue (sans douleur) Cornée • Sensibilité à la lumière vive et éblouissements • Vision double dans un oeil • Vision nocturne difficile Conjonctive • Couleurs fades ou jaunâtres • Changements fréquents de prescriptions de lunettes ou de len - Nerf optique tilles de contact. Quels traitements anticancéreux augmentent le risque d’une cataracte ? • Certains médicaments, entre autres : busulfan Le – – Les corticostéroïdes , par exemple la prednisone et la dexaméthasone aux champs suivants : • La radiothérapie – Orbite (l’oeil et les alentours) – Crâne (la tête ou le cerveau) – Irradiation corporelle totale | Version 4.0 | | 10/13 Cataracts Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Page 1 de 3

198 Health Link Vivre en santé après le traitement pour un cancer pédiatrique • Le risque de développer des cataractes augmente avec : La radiothérapie à forte dose – L’exposition fréquente au soleil – – Le temps écoulé depuis la thérapie Quel est le suivi recommandé ? • L’examen annuel des yeux au moment du suivi médical Une évaluation complète des yeux par un spécialiste (ophtalmologiste ou optométriste) : • si vous avez eu : Chaque année une irradiation corporelle totale – - de la radiothérapie à fortes doses, c’est-à-dire 30 Gy (3000 cGy ou 3000 rad) ou plus, à la tête, au cer – veau ou aux yeux une tumeur impliquant l’oeil – À tous les 3 ans si vous avez eu : des doses de radiothérapie plus faibles que ci-dessus. – Quel est le traitement de la cataracte ? Ce ne sont pas toutes les cataractes qui nécessitent un traitement. Selon le cas, l’ophtalmologiste surveillera la cata - racte de près, possiblement pendant plusieurs années, et ne recommandera le traitement que lorsque cela deviendra - nécessaire. Le seul traitement de la cataracte est une intervention chirurgicale pour enlever le cristallin et le rem placer par une lentille artificielle. Aujourd’hui, la chirurgie de la cataracte est une procédure très sécuritaire qui est réalisée en chirurgie d’un jour (entrée et sortie le jour même) et qui permet habituellement de recouvrer une vision normale. Comment est-ce que je peux garder mes yeux en santé ? Il est toujours important de : - Porter des lunettes de soleil avec protection contre les rayons ultraviolets (UV) lors des journées très en • soleillées. Porter des lunettes protectrices pour pratiquer le sport. Elles doivent être adéquates pour le sport en question, • et ajustées par un spécialiste des yeux. Éviter les jouets avec des pointes, protubérances, ou projectiles. • • Ne jamais jouer avec des feux d’artifice, « sparklers » ou toute autre source d’étincelles, afin d’éviter toute blessure accidentelle. • Être prudent(e) dans l’emploi des produits domestiques chimiques. Porter des lunettes protectrices lors du travail avec une tondeuse à gazon, une scie électrique, un coupe-herbe/ • bordure, ou tout outil dangereux dans l’atelier. Consulter un médecin rapidement lors d’une blessure à l’oeil. • | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Cataracts | Version 4.0 | 10/13 Page 2 de 3

199 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Écrit par Dr Melissa M. Hudson, MD, After Completion of Therapy Clinic, St. Jude Children’s Research Hospital, Memphis, TN, ® , Survivorship Clinic, City of Hope National Medical Center, Duarte, CA, USA. Certaines et Wendy Landier, RN, PhD, CPNP, CPON sections adaptées de CCSS Newsletter, hiver 2001, avec permission. ® ; et Joan Darling, PhD Révisé par Lisa Bashore, PhD, RN, CPNP, CPON Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org www.cancer.ca La société canadienne du cancer, http://info.cancer.ca/cce-ecc L’Encyclopédie canadienne du cancer, Noter: Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété Introduction to Late Effects Guidelines Health » ainsi que les fiches « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health Links: « et » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le Links : Le terme « Contenu informatif » désigne Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, » ou « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ou intitulé « », que ce soit sous forme électronique ou imprimée (y compris tout Health Link format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les À l’attention des médecins et autres professionnels de la santé autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en Aucune garantie d’exactitude ni d’exhaustivité date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo gy Group et parties liées - : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Cataracts | Version 4.0 | 10/13 Page 3 de 3

200 Health Link Vivre en santé après le traitement pour un cancer pédiatrique La Santé Dentaire Suite au Traitement d’un Cancer Pédiatrique Le traitement du cancer chez l’enfant augmente souvent le risque de problèmes dentaires. Ayant survécu un cancer pédiatrique, il est très important pour vous de comprendre pourquoi il est nécessaire de respecter une bonne hygiène dentaire. Quels sont les facteurs de risque de problèmes dentaires ? • La chimiothérapie reçue avant la formation complète des dents permanentes, plus particulièrement avant l’âge de 5 ans aux champs comprenant la bouche et/ou les glandes salivaires • La radiothérapie • (souvent administré aux patients recevant une greffe de cellules hématopoïétiques) L’azathioprine La maladie chronique du greffon contre l’hôte • (cGVHD) suite à une greffe de cellules hématopoïétiques Quels sont les problèmes dentaires qui peuvent survenir ? Suite à la pendant l’enfance : chimiothérapie ou la greffe de cellules hématopoïétiques Risque augmenté de caries dentaires • • Raccourcissement ou amincissement des racines des dents Absence de dents ou de racines • Problèmes de développement de l’émail dentaire, pouvant inclure (sur les dents) des marques blanches ou des • décolorations, des petits points ou des rainures, et/ou des taches facilement acquises Parce que le développement des dents est un long processus, ces problèmes sont particulièrement apparents chez les personnes ayant reçu de la chimiothérapie sur une longue période de temps (ex : quelques années) pendant l’enfance. Suite à la radiothérapie à la bouche et/ou aux glandes salivaires : Risque augmenté de caries dentaires • • Raccourcissement ou amincissement des racines des dents • Absence de dents ou de racines Problèmes de développement de l’émail dentaire, pouvant inclure (sur les dents) des marques blanches ou des • décolorations, des petits points ou des rainures, et/ou des taches facilement acquises Dents trop petites • • Perte précoce des dents Dents de lait qui ne tombent pas • Développement anormal des dents ou un délai dans l’éruption des dents permanentes • Risque plus élevé de sensibilité des dents au froid et au chaud • Xérostomie (bouche sèche due à une diminution de la production de salive) • • Changements dans le goût • Trismus (capacité limitée d’ouvrir la bouche en grand) | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Dental Health | Version 4.0 | 10/13 Page 1 de 5

201 Health Link Vivre en santé après le traitement pour un cancer pédiatrique • Troubles de l’articulation temporo-mandibulaire (douleur à l’avant de l’oreille) • Malocclusion (surplomb vertical « overbite » ou infraclusion « underbite ») Croissance anormale des os du visage ou du cou • Maladies des gencives • Ostéonécrose mandibulaire (guérison difficile de la mâchoire après une chirurgie dentaire ou l’extraction d’une • associée, présentement disponible en anglais seulement, « Osteoradionecrosis Health Link dent) (voir la fiche »). Quoi faire ? Il est très important d’être vigilant en ce qui concerne l’hygiène des dents et des gencives, particulièrement si vous avez reçu de la radiothérapie ou de la chimiothérapie en bas âge. Une gencive en mauvaise santé risque de se rétracter et faire de l’inflammation, ce qui peut entrainer une infection et un rétrécissement graduel de l’os autour de la dent. Les dents deviennent alors insuffisamment soutenues par l’os, et à la longue, bougent et risquent de tomber. parodontite , n’est pas inévitable. Il s’agit de maintenir une bonne hygiène : se L’inflammation de la gencive, dite brosser les dents et les gencives et utiliser la soie dentaire entre les dents au moins une fois par jour. Le bon soin des - dents et des gencives et les visites régulières chez le dentiste peuvent prévenir les caries et les maladies de gen cives. ne se développaient pas comme il faut, elles pourraient avoir besoin de couronnes pour dents permanentes Si vos ne se formaient pas adéquate os de la figure ou de la gencive améliorer leur fonctionnalité et votre sourire. Si les - ment, une chirurgie reconstructive pourrait s’avérer nécessaire. Si la radiothérapie avait des effets secondaires sur ) qui empêchent la bouche fibroses , il pourrait y avoir des raideurs ou des cicatrices ( les muscles de la mâchoire de s’ouvrir en grand ( ). Des exercices d’étirement de la mâchoire existent alors pour soulager le problème. trismus Votre dentiste saura vous les expliquer; sinon, il vous référera à un ergothérapeute. Pour les dents trop petites ou de , parfois une mince couche de plastique spécial appliquée à la surface de la dent sera suffisante pour couvrir travers - les défectuosités. Sinon, un orthodontiste pourrait corriger la dentition. Votre dentiste vous fera d’abord une radiog raphie panoramique (Panorex) pour déterminer si les dents, les gencives, et le support osseux sont adéquats pour le port de broches. De plus, pour toute personne ayant reçu de la radiothérapie à fortes doses au visage ou à la bouche, , que le dentiste consulte un radiothérapeute : parfois, avant de procéder à toute chirurgie dentaire il est important ). Il ostéoradionécrose ce genre de radiation risque de provoquer des difficultés de guérison de l’os de la mâchoire ( est également nécessaire d’aviser votre dentiste de toute greffe allogénique de moelle osseuse ou de cellules souch - es (c’est-à-dire, provenant d’un donneur autre que vous-même). Cela lui permettrait de déceler tout changement maladie chronique du greffon contre l’hôte indiquant une . Qu’est-ce qu’on appelle la xérostomie, et que dois-je faire si je l’ai ? La xérostomie est un manque et/ou un épaississement de la salive, donnant la sensation d’une bouche sèche. Cet état peut être induit par la radiothérapie à la tête ou au cou. La xérostomie entraine d’autres problèmes, tels un mal de gorge persistant, des sensations de brûlures à la bouche ou aux gencives, des difficultés à parler ou à avaler, une voix enrouée, ou les muqueuses nasales desséchées. Une bouche sèche favorise aussi le développement de caries dentaires. Boire fréquemment et l’usage de salive artificielle peuvent alléger les symptômes. Les bonbons sans sucre sont également bons pour stimuler la production de salive. Évitez toutefois les sucreries. Une bonne hygiène dentaire est | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Dental Health | Version 4.0 | 10/13 Page 2 de 5

202 Health Link Vivre en santé après le traitement pour un cancer pédiatrique absolument essentielle. Votre dentiste vous recommandera peut-être aussi l’application d’un gel fluoré sur les dents au moins une fois par jour. Le fluor rend l’émail des dents plus résistant aux caries. Renseignez-vous auprès de votre dentiste. Dois-je prendre des précautions particulières avant les soins dentaires ? Toujours aviser votre dentiste en l’occurrence des états de santé suivants : • (un tube introduit par intervention chirurgicale, qui permet à du liquide de s’écouler du cerveau) Shunt (remplacement d’un os par une tige en métal ou une greffe • Intervention visant à épargner un membre osseuse) (suite à la radiothérapie au thorax) Valve cardiaque avec fuite ou cicatrisation • (ablation de la rate) Splénectomie • • , c’est-à-dire 40 Gy (4000 cGy ou 4000 rad) ou plus Radiothérapie à fortes doses à la rate • - (cGVHD) suite à une greffe de cellules hé Maladie active et chronique du greffon contre l’hôte matopoïétiques Dans chacune de ces situations, les soins dentaires risquent d’augmenter la possibilité d’une infection grave suite aux bactéries qui entrent normalement dans le sang durant ces procédures. Les antibiotiques sont donc indiqués à titre préventif avant d’entreprendre tout soin dentaire. Consultez votre dentiste à savoir si cela s’applique à vous (voir aussi les fiches Heart », et « Limb Salvage after Bone Cancer associées, « La rate – précautions », « Health Link », ces deux dernières présentement disponibles en anglais Problems following Treatment for Childhood Cancer seulement). Quel est le risque de développer un cancer buccal ? Les personnes ayant reçu de la radiothérapie à la tête ou au cou pendant l’enfance, ou qui ont une cGVHD suite à une greffe de moelle osseuse ou de cellules souches, ont un risque augmenté du cancer de la bouche. Le tabac sous toutes ses formes ainsi que l’alcool combiné au tabac augmentent le risque de façon majeure. L’infection à certains types du virus du papillome humain (VPH) augmente également ce risque. Votre dentiste se doit de faire le dépistage du cancer buccal à chaque visite. Si vous remarquez l’un des signes suivants, signalez-le à votre dentiste immédiatement : ou qui saigne facilement Une plaie qui ne guérit pas • Un changement de couleur • dans les tissus de la bouche Une grosseur, un épaississement ou un endroit rugueux dans la bouche • n’importe où dans la bouche ou sur les lèvres • De la douleur, sensibilité ou engourdissement La plupart du temps, ces symptômes n’indiquent rien d’inquiétant, mais seul votre dentiste peut déterminer si oui ou non ils signalent un problème sérieux. Qu’est-ce que je peux faire pour garder une bouche et des dents saines ? À moins que votre dentiste n’indique différemment, voici les recommandations à suivre : . Assurez-vous que votre dentiste soit au courant de votre Voir le dentiste régulièrement tous les 6 mois • dossier médical et des traitements que vous avez reçus (demandez à votre oncologue une liste décrivant vos traitements). Assurez-vous aussi que la visite chez le dentiste inclut le dépistage du cancer buccal, et soyez certain d’aviser votre dentiste si vous trouvez des signes suspects. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Dental Health | Version 4.0 | 10/13 Page 3 de 5

203 Health Link Vivre en santé après le traitement pour un cancer pédiatrique pour évaluer l’évolution des racines et Faire un Panorex avant tout traitement dentaire/orthodontique • déterminer s’il devrait y avoir changement au plan de traitement. • Se brosser les dents au moins deux fois par jour Se servir de dentifrice au fluorure pour prévenir les caries dentaires – – Placer la brosse à un angle sensiblement orienté vers la gencive pour brosser l’interface entre la dent et la gencive – Se servir d’une brosse à poils souples, telle que recommandée par votre dentiste Nettoyer toutes les surfaces de la dent – Brosser la langue pour éliminer toute trace de bactéries qui pourraient causer une mauvaise haleine – • Utiliser la soie dentaire une ou deux fois par jour – Passer la soie entre les dents pour enlever la plaque que le brossage seul n’élimine pas Procéder doucement pour ne pas endommager les gencives – Il est normal qu’il y ait un peu de saignement, mais si cela augmentait ou si les gencives devenaient – rouges et enflées, il risquerait d’y avoir de l’infection; consulter votre dentiste. (votre dentiste pourra vous suggérer les meilleurs). Utiliser un rince-bouche antibactérien sans alcool • (disponible sans prescription dans la plupart des pharma Boire souvent et/ou utiliser de la salive artificielle • - cies) si vous avez la bouche sèche. • Faire des applications fréquentes de fluor . Votre dentiste pourrait vous suggérer un rince-bouche ou un gel fluoré, à utiliser à la maison après le brossage des dents. Ceci serait en plus de l’application de fluor que vous recevez peut-être lors du nettoyage périodique chez le dentiste. • Limiter les sucreries et les aliments riches en glucides . (vérifier avec votre médecin si vous avez • Éliminer le tabac et limiter l’alcool à l’usage modéré seulement droit a l’alcool, car l’alcool risque d’aggraver certains problèmes reliés au traitement du cancer). à la bouche ou aux gencives, tels • Consulter votre dentiste dès que vous remarquez des signes d’infection que rougeur, sensibilité, endroits sensibles, saignements de gencive aggravés, ou mal de dent. au sujet des problèmes dentaires suite à un cancer pédiatrique, vous pouvez consulter : Pour plus d’information www.mouthhealthy.org Site web en anglais de l’American Dental Association ( • ) • , disponible sur le site web de l’Ordre des hygiénistes dentaires L’hygiéniste dentaire et l’oncologie Le dépliant www. du Québec , sous l’onglet Nos publications>Documents éducatifs>L’hygiéniste dentaire et l’oncologie ( ohdq.co m ) ” de Dr Melissa Hudson, MD, St. Jude Children’s Research Hospital, After Completion of Therapy Adapté de “ Save Your Smile ® , Children’s National Medical Center, Washington, D.C. (ACT) Clinic; par Debbie Lafond, DNP, RNCS, PNP, CPON ® ; Joan Darling, PhD; Dr Louis S. Constine, MD; Dr Smita Bhatia, Révisé par Man Wai Ng, DDS; Revonda Mosher, MS, CPNP, CPON ® MD, MPH; et Lisa Bashore, PhD, RN, CPNP, CPON Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Dental Health | Version 4.0 | 10/13 Page 4 de 5

204 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org www.cancer.ca La société canadienne du cancer, L’Encyclopédie canadienne du cancer, http://info.cancer.ca/cce-ecc Noter: Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété Health » ainsi que les fiches « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines et Health Links: « » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le Links Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement : Le terme « Contenu informatif » désigne tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ou intitulé « », que ce soit sous forme électronique ou imprimée (y compris tout Health Link » ou « format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. À l’attention des médecins et autres professionnels de la santé : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en Aucune garantie d’exactitude ni d’exhaustivité date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo gy Group et parties liées - : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Dental Health | Version 4.0 | 10/13 Page 5 de 5

205 Health Link Vivre en santé après le traitement pour un cancer pédiatrique La Santé des Yeux Suite au Traitement d’un Cancer Pédiatrique Certains traitements du cancer chez l’enfant peuvent occasionner des problèmes visuels à long terme. Il s’agit, en particulier, de la radiothérapie à fortes doses au cerveau, à l’oeil, ou à l’orbite de l’oeil, ainsi que du traitement à l’iode radioactif. La maladie du greffon contre l’hôte (une réaction immunitaire qui suit parfois la greffe de moelle osseuse ou de cellules souches) peut aussi endommager les yeux. Comme la vision a un impact majeur sur la vie quotidienne, il est important que les personnes ayant reçu de tels traitements se fassent examiner régulièrement les yeux. Comment fonctionnent les yeux ? L’oeil est un organe formidable, permettant la conversion des rayons lumineux en Glande ymale lacr impulsions. Ces impulsions transmettent des messages au cerveau, qui les inter - prète et en perçoit une image. L’oeil se trouve dans une cavité du crâne appelé Orbite Canal de l’oeil. Une membrane mince mais protective, , recouvre l’orbite la conjonctive lacr ymal la surface de l’oeil et l’intérieur des paupières. Au coin supérieur de l’orbite, au , qui produit les larmes. la glande lacrymale dessus du globe oculaire, se trouve Les larmes coulent par dessus l’oeil pour le lubrifier et aboutissent dans le canal Cristallin lacrymal au coin intérieur de l’oeil. La lumière entre dans l’oeil en passant par un Rétine dôme de tissu transparent qu’on appelle la cornée. La cornée fait dévier la lumière Pupille . La pupille contrôle combien de pupille vers une ouverture au centre de l’oeil, la Cornée lumière entre dans l’oeil. Derrière la pupille se trouve la lentille appelée le cristal - , c’est-à-dire lin rétine , qui fait la mise au point et fait converger la lumière sur la Conjonctive la membrane située au fond de l’oeil. Les cellules nerveuses de la rétine trans - forment la lumière en impulsions électriques, qui vont vers le cerveau via le nerf Nerf optique . C’est le cerveau qui perçoit l’image. optique Quels problèmes peuvent survenir aux yeux suite au traitement d’un cancer ? Cataractes : Une cataracte est un cristallin devenu opaque. Cette opacité empêche la lumière de passer facilement. Les symptômes sont souvent les suivants : vision floue (sans douleur), sensibilité à la lumière et éblouissements, vision double dans un oeil, baisse de la vision nocturne, couleurs fades ou jaunâtres, et changements fréquents des prescriptions de lunettes ou de lentilles de contact (voir la fiche santé Health Link sur les cataractes). : La xérophtalmie est un assèchement de la surface de l’oeil (les yeux secs) suite à une diminution de Xérophtalmie la production de larmes. Cette condition peut être causée par la radiothérapie ou la maladie du greffon contre l’hôte. Parmi les symptômes, il peut y avoir de la douleur à la surface de l’oeil et une sensibilité à la lumière vive. Atrophie du canal lacrymal : Un rétrécissement ou « atrophie » du canal lacrymal, qui draine les larmes, peut se manifester par les yeux larmoyants. L’atrophie du canal lacrymal peut être causée par la radiothérapie à l’oeil ou à l’orbite, ou encore par l’iode radioactif (I-131), traitement du cancer de la thyroïde. Autres problèmes reliés aux yeux : Les problèmes ci-dessous sont moins fréquents et ne se retrouvent généralement que chez les personnes ayant reçu des doses élevées de radiothérapie directement à l’oeil ou à l’orbite. : L’oeil et les tissus autour de l’oeil ne sont pas suffisamment développés et peuvent paraitre Hypoplasie orbitaire petits. | Page 1 de 5 | Version 4.0 | Eye Health Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. 10/13

206 Health Link Vivre en santé après le traitement pour un cancer pédiatrique : Le globe de l’oeil semble enfoncé dans l’orbite. Énophtalmie : La kératite est une inflammation de la cornée (la couche transparente à la surface de d’oeil). La kératite Kératite peut occasionner de la douleur à la surface de l’oeil et une sensibilité à la lumière vive. : Les télangiectasies sont de petits vaisseaux sanguins dilatés dans le blanc de l’oeil. Elles ne cau - Télangiectasies sent habituellement pas de symptômes, mais restent toutefois visibles. Rétinopathie : La rétinopathie est un endommagement à la rétine (la membrane au fond de l’oeil qui transforme la lumière en messages destinés au cerveau). La rétinopathie se traduit par une perte de vision non douloureuse. Maculopathie : La maculopathie est un endommagement à la macula (la zone centrale de la rétine). La vision peut être brouillée. Neuropathie du chiasma optique : Un endommagement aux nerfs qui transmettent les informations visuelles au cerveau se manifeste par une perte de vision. Papillopathie : La papillopathie est une enflure du disque optique (l’endroit où le nerf optique pénètre l’oeil). : Une augmentation de la pression intraoculaire peut endommager le nerf optique et entraîner la perte de Glaucome vision. Quels traitements anticancéreux augmentent le risque de problèmes aux yeux ? à fortes doses, c’est-à-dire 30 Gy (3000 cGy ou 3000 rad) ou plus, aux champs suivants : La radiothérapie • – L’oeil L’orbite – Le crâne (la tête ou le cerveau) – • Autres facteurs qui pourraient augmenter le risque Iode radioactif (I-131) pour le traitement du cancer de la thyroïde (risque augmenté d’une atrophie du – canal lacrymal) suite à une greffe de moelle osseuse, de cellules souches, – Maladie chronique du greffon contre l’hôte ou de sang de cordon (risque augmenté de xérophtalmie) (risque augmenté des problèmes impliquant la rétine et le nerf optique) Diabète – – (risque augmenté de neuropathie du chiasma optique) Hypertension (risque augmenté de cataractes) Exposition fréquente au soleil – combinées à la , telles que l’actinomycine-D et la doxorubicine, lorsque – Certaines chimiothérapies radiothérapie Quel est le suivi recommandé ? Une évaluation par un ophtalmologiste au moins une fois par an, pour toute personne ayant eu : • – Une tumeur impliquant l’oeil - De la radiothérapie à des doses de 30 Gy (3000 cGy ou 3000 rad) ou plus au cerveau, à l’oeil, ou à l’or – bite La maladie du greffon contre l’hôte (suivant une greffe de moelle osseuse, de cellules souches, ou de sang de cordon) | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Eye Health | Version 4.0 | 10/13 Page 2 de 5

207 Health Link Vivre en santé après le traitement pour un cancer pédiatrique - : L’ophtalmologiste est un médecin (MD ou DO) spécialiste des yeux. Ceci est différent d’un optomé À noter * triste (OD) qui est un spécialiste de la vision mais qui n’est pas médecin. L’examen par un ophtalmologiste doit inclure un examen complet de la structure interne de l’oeil et le dépistage de la vision et de la cataracte. Toute personne ayant des problèmes visuels doit être suivie régulièrement par un ophtalmologiste. Une évaluation par un oculariste (qui fabrique et pose les yeux artificiels) au moins une fois par an, pour toute • personne ayant eu : – Un oeil enlevé pour le traitement du cancer ou suite à des complications reliées au traitement Un oeil artificiel (prothèse oculaire) mal ajusté – • Une évaluation par un ophtalmologiste, à l’occurrence, pour toute personne ayant reçu de l’iode radioactif (I- 131) et souffrant des yeux larmoyants. Si vous développez n’importe lequel des symptômes suivants , consultez rapidement un médecin. Une visite chez un ophtalmologiste pourrait être nécessaire : • Vision trouble Vision double • Tache aveugle • Sensibilité à la lumière vive • • Vision nocturne difficile Irritation persistante de la surface de l’oeil ou des paupières • Yeux larmoyants • Douleur à l’oeil • • Yeux secs Quels sont les traitements des problèmes visuels ? - Cataractes : Ce ne sont pas toutes les cataractes qui nécessitent un traitement. Selon le cas, l’ophtalmologiste sur veillera la cataracte de près, possiblement pendant plusieurs années, et ne recommandera le traitement que lorsque cela deviendra nécessaire. Le seul traitement de la cataracte est une intervention chirurgicale pour enlever le cristal - lin et le remplacer par une lentille artificielle. Aujourd’hui, la chirurgie de la cataracte est une procédure très sécu - ritaire qui est réalisée en chirurgie d’un jour (entrée et sortie le jour même) et qui permet habituellement de recouvrer une vision normale. - : Le traitement n’est généralement pas nécessaire. Dans un cas sévère, une chirurgie recon Hypoplasie orbitaire structive des os autour de l’oeil peut être possible. : Une chirurgie reconstructive de l’orbite peut être possible. Énophtalmie Atrophie du canal lacrymal : Si les larmes excessives deviennent problématiques, une intervention chirurgicale pourra élargir le canal pour permettre au liquide de s’écouler. : L’usage fréquent d’onguents ou de gouttes pour les yeux (larmes artificielles) peut soulager les yeux Xérophtalmie secs. Dans les cas sévères, une intervention chirurgicale peut boucher le système d’écoulement des larmes pour diminuer la perte de liquide. : On recommande l’usage fréquent de gouttes pour les yeux (larmes artificielles) ou d’onguents pour humec Kératite - ter la surface de l’oeil. Recouvrir l’oeil d’un « patch » pour dormir peut aider à la guérison. Dans le cas d’une kératite | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Eye Health | Version 4.0 | 10/13 Page 3 de 5

208 Health Link Vivre en santé après le traitement pour un cancer pédiatrique due à l’infection, un antibiotique en gouttes ou en onguent peut être prescrit. Il est parfois nécessaire, mais rarement, de remplacer la cornée (transplantation de cornée, intervention chirurgicale). : Aucun traitement n’est nécessaire. Télangiectasies Rétinopathie et maculopathie : Un traitement de la rétine au laser (appelé photocoagulation) peut être nécessaire. Il est rarement requis, sauf dans certains cas sévères, de retirer l’oeil. Neuropathie du chiasma optique : Il n’y a présentement aucun traitement disponible. Que faire lorsqu’un problème visuel est détecté ? Si un problème visuel est détecté, il est très important de suivre les options de traitement recommandées par votre ophtalmologiste. Si la vue ne peut être corrigée, diverses ressources sont disponibles au sein de la communauté pour aider les handicapés visuels. http:// ), le Centre de réadaptation MAB-Mackay ( http://www.cnib.ca/fr/ Au Québec, vous pouvez consulter l’INCA ( http://www.inlb.qc.ca/ www.mabmackay.ca/ ), et l’Institut Nazareth et Louis-Braille (INBL ). Aux États-Unis, certains services sont disponibles pour les individus de moins de 22 ans à partir de la commission - scolaire locale ou d’autres agences de référence (services alloués selon l’acte « Individuals with Disabilities Educa tion Act, PL 105-17 »). Parfois, certains accommodements seront suffisants, tels que placer un enfant à l’avant de la classe, mais ceux-ci pourraient nécessiter un plan d’enseignement individualisé (PEI) de la part de la commission Health Link scolaire (voir la fiche Educational Issues associée, présentement disponible en anglais seulement, « Following Treatment for Childhood Cancer (ADA, PL 101-336) » garantie Americans with Disabilities Act »). L’acte « aux personnes vivant avec une déficience visuelle l’égalité d’accès aux événements publics, aux espaces, et aux perspectives d’avenir. Comment est-ce que je peux me protéger les yeux ? Il est important de se protéger les yeux, même pour les personnes n’ayant pas de problèmes reliés au traitement anticancéreux. Certaines précautions s’imposent : • - Porter des lunettes de soleil avec protection contre les rayons ultraviolets (UV) lors des journées très en soleillées. • Porter des lunettes protectrices pour pratiquer le sport. Elles doivent être adéquates pour le sport en question, et ajustées par un spécialiste des yeux. Éviter les jouets avec des pointes, protubérances, ou projectiles. • Ne jamais jouer avec des feux d’artifice, « sparklers » ou toute autre source d’étincelles, afin d’éviter toute • blessure accidentelle. Être prudent(e) dans l’emploi des produits domestiques chimiques. • Porter des lunettes protectrices lors du travail avec une tondeuse à gazon, une scie électrique, un coupe-herbe/ • bordure, ou tout outil dangereux dans l’atelier. Consulter un médecin rapidement lors d’une blessure à l’oeil. • Écrit par Teresa Sweeney, RN, MSN, CPNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Eye Health | Version 4.0 | 10/13 Page 4 de 5

209 Health Link Vivre en santé après le traitement pour un cancer pédiatrique ® ; et Révisé par Dr Julie Blatt, MD; Dr Debra Friedman, MD; Dr Melissa M. Hudson, MD; Revonda Mosher, RN, MSN, CPNP, CPON Lise Yasui Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org www.cancer.ca La société canadienne du cancer, L’Encyclopédie canadienne du cancer, http://info.cancer.ca/cce-ecc Noter: Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété » ainsi que les fiches « Health et Health Links: « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le Links : Le terme « Contenu informatif » désigne Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, », que ce soit sous forme électronique ou imprimée (y compris tout Health Link » ou « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ou intitulé « format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. À l’attention des médecins et autres professionnels de la santé : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en Aucune garantie d’exactitude ni d’exhaustivité date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo gy Group et parties liées - : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Eye Health | Version 4.0 | 10/13 Page 5 de 5

210 Growth Hormone Deficiency Health Link Vivre en santé après le traitement pour un cancer pédiatrique Les Problèmes Endocriniens Suite au Cancer Pédiatrique : Déficit en Hormone de Croissance Les traitements du cancer chez l’enfant peuvent parfois endommager le réseau complexe que forment les glandes - du corps, un réseau que l’on appelle le système endocrinien. Ainsi, les personnes ayant reçu des traitements antican céreux pendant l’enfance peuvent parfois développer des problèmes hormonaux reliés au système endocrinien. Qu’est-ce que le système endocrinien ? Hypophyse Le système endocrinien est un réseau de Hypothalamus glandes qui contrôlent les fonctions du corps Thyroïde telles que la croissance, la puberté, le niveau d’énergie, la production d’urine et la réponse au stress. Ces glandes incluent l’hypophyse, - l’hypothalamus, la thyroïde, les glandes surré nales, le pancréas, les ovaires chez les filles et Pancréas les femmes, et les testicules chez les hommes Glandes surrénales et les garçons. Reconnues souvent comme « les glandes maîtresses du corps », l’hypophy - Ovaires se et l’hypothalamus (situés dans le cerveau) contrôlent d’autres glandes du système en - docrinien. Malheureusement, certains traite - ments contre le cancer pédiatrique peuvent Testicules endommager l’hypothalamus et l’hypophyse, causant ainsi divers problèmes. Quel est le rôle des hormones ? Les glandes endocrines fabriquent de nombreuses hormones et les libèrent dans le sang. Ces hormones jouent le rôle de messagers chimiques pour transmettre de l’information vers divers types de cellules à travers le corps. L’hormone de croissance, les hormones sexuelles, les hormones thyroïdiennes et les hormones surrénaliennes ont chacune des fonctions spécifiques qui permettent à l’individu de grandir, de se développer, et de se maintenir en bonne santé. Qu’est-ce qu’un déficit en hormone de croissance ? L’hormone de croissance (GH) est une des hormones produites par l’hypophyse. Pour qu’un enfant puisse atteindre sa taille potentielle, il lui faut une quantité adéquate de GH. En présence de suffisamment d’exercice et de sommeil et d’une bonne nutrition, la GH et les hormones thyroïdiennes aident les enfants et les adolescents à grandir. La GH aide aussi à maintenir le taux normal du sucre (glucose) dans le sang et est nécessaire pour le développement normal des dents. En plus de favoriser la croissance des os, la GH affecte le fonctionnement du coeur et des vaisseaux sanguins, le métabolisme des matières grasses, le développement des muscles, et généralement, le bien-être et la santé tout au cours de la vie. Ainsi, l’adulte en bonne santé continue à produire de la GH, car même les adultes ont besoin d’une petite quantité de GH suffisante à maintenir des quantités adéquates de gras, de muscles, et d’os. Il est possible que la GH joue aussi un rôle dans le contrôle de l’humeur et des émotions. Les traitements anticancéreux dirigés vers la tête ou le cerveau, soit la radiothérapie ou la chirurgie, peuvent endom - mager les glandes qui contrôlent la croissance, telles l’hypophyse ou l’hypothalamus. Quand l’hypophyse ne produit Growth Hormone Deficiency | 10/13 | Version 4.0 | Page 1 de 3 Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement.

211 Health Link Vivre en santé après le traitement pour un cancer pédiatrique plus assez de GH, on parle de déficience ou déficit en GH. Il est important de noter que même les personnes qui n’ont jamais eu de traitements contre le cancer peuvent aussi développer un déficit en GH. Les signes et symptômes du déficit en hormone de croissance Un des signes les plus évidents du déficit en GH chez l’enfant est le ralentissement de la croissance. Un enfant avec un déficit en GH grandit de moins de 5 cm (2 pouces) par an. Il est souvent plus petit et a l’air plus jeune que les autres enfants de son âge. Toutefois, il garde un corps habituellement bien proportionné. Chez l’adulte, un déficit en GH peut entrainer divers symptômes. Les os peuvent diminuer de masse, les muscles s’affaiblir, le corps grossir, et le taux de cholestérol augmenter. Émotivement, la personne peut se sentir fatiguée, anxieuse, irritable, déprimée, ou manquer de motivation ou de désir sexuel. Facteurs de risque pour le déficit en hormone de croissance Les facteurs de risque reliés aux traitements anticancéreux pendant l’enfance incluent : Traitement reçu avant d’avoir atteint la taille adulte, plus particulièrement les très jeunes enfants • Radiothérapie à un ou plusieurs des champs suivants : • Crâne (la tête et/ou le cerveau) – Orbite (l’oeil ou l’orbite de l’oeil) – Région nasopharyngée (la région au dessus du palais de la bouche) – – Région infra-temporale (côté du visage en dessous des pommettes) ou l’oreille Irradiation corporelle totale • Chirurgie au cerveau, notamment à la région centrale où se trouve l’hypophyse (région suprasellaire) • Suivi recommandé après le traitement anticancéreux - On recommande à tous les enfants ayant survécu à un cancer pédiatrique de passer un examen annuel chez le mé - decin. Cet examen physique devrait inclure les mesures de taille et de poids ainsi qu’une évaluation du statut puber taire, de l’état nutritionnel, et de l’état de santé général. Pour les patients avec certains facteurs de risque ci-dessus, - ce suivi doit se faire tous les 6 mois jusqu’à la fin de la croissance. Si l’on trouvait des signes d’un retard de crois sance, il faudrait faire une radiographie du poignet (âge osseux) et aussi déterminer les autres causes possibles du retard, telles qu’une déficience de la glande thyroïde. - Si votre médecin soupçonne un déficit en GH, il vous référera probablement à un endocrinologue (médecin spécial iste de la prise en charge des problèmes hormonaux). Votre endocrinologue sera en mesure de faire des tests plus spécifiques pour évaluer le problème. Quel est le traitement du déficit en hormone de croissance ? - S’il existe un déficit en hormone de croissance, votre endocrinologue vous suggérera certaines options thérapeu tiques. Le traitement implique généralement une supplémentation de GH pour remplacer celle que l’hypophyse ne produit plus en quantité suffisante. La GH synthétique est administrée par injection. Le traitement dure habituellement quelques années, jusqu’à ce que la personne atteigne une taille adulte acceptable ou tout au moins sa plus grande taille possible. Votre endocrinologue pourra vous donner une indication de la croissance possible par le traitement par GH. Pour un déficit de GH persistant à l’âge adulte, votre endocrinologue déterminera avec vous les meilleures options de traitement. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Growth Hormone Deficiency | Version 4.0 | 10/13 Page 2 de 3

212 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Écrit par Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Révisé par Dr Lillian R. Meacham, MD; Priscilla Rieves, MS, RN, CPNP; Dr Charles Sklar, MD; Dr Julie Blatt, MD; Peggy Kulm, RN, MA; et Marcia Leonard, RN, PNP. Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org www.cancer.ca La société canadienne du cancer, L’Encyclopédie canadienne du cancer, http://info.cancer.ca/cce-ecc Noter: Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété » ainsi que les fiches « Health Health Links: « et Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Introduction to Late Effects Guidelines » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le Links Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement : Le terme « Contenu informatif » désigne tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, », que ce soit sous forme électronique ou imprimée (y compris tout Health Link » ou « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ou intitulé « format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. À l’attention des médecins et autres professionnels de la santé : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en Aucune garantie d’exactitude ni d’exhaustivité date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo gy Group et parties liées - : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Growth Hormone Deficiency | Version 4.0 | 10/13 Page 3 de 3

213 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Les Problèmes Endocriniens Suite au Cancer Pédiatrique : La Puberté Précoce Les traitements du cancer chez l’enfant peuvent parfois endommager le réseau complexe que forment les glandes - du corps, un réseau que l’on appelle le système endocrinien. Ainsi, les personnes ayant reçu des traitements antican céreux pendant l’enfance peuvent parfois développer des problèmes hormonaux reliés au système endocrinien. Qu’est-ce que le système endocrinien ? Hypophyse Le système endocrinien est un réseau de Hypothalamus glandes qui contrôlent les fonctions du corps Thyroïde telles que la croissance, la puberté, le niveau d’énergie, la production d’urine et la réponse au stress. Ces glandes incluent l’hypophyse, - l’hypothalamus, la thyroïde, les glandes surré nales, le pancréas, les ovaires chez les filles et Pancréas les femmes, et les testicules chez les hommes Glandes surrénales et les garçons. Reconnues souvent comme « - les glandes maîtresses du corps », l’hypophy Ovaires se et l’hypothalamus (situés dans le cerveau) contrôlent d’autres glandes du système en - - docrinien. Malheureusement, certains traite ments contre le cancer pédiatrique peuvent Testicules endommager l’hypothalamus et l’hypophyse, causant ainsi divers problèmes. Quel est le rôle des hormones ? Les glandes endocrines fabriquent de nombreuses hormones et les libèrent dans le sang. Ces hormones jouent le rôle de messagers chimiques pour transmettre de l’information vers divers types de cellules à travers le corps. L’hormone de croissance, les hormones sexuelles, les hormones thyroïdiennes et les hormones surrénaliennes ont chacune des fonctions spécifiques qui permettent à l’individu de grandir, de se développer, et de se maintenir en bonne santé. À quel âge débute la puberté ? La puberté débute généralement entre 8 et 13 ans chez les filles et entre 9 et 14 ans chez les garçons. L’âge de la puberté est influencé par l’hérédité, et ainsi il est possible que chez certaines familles, la puberté commence plus tôt que chez d’autres. Pour la plupart des jeunes filles, les seins commencent à se développer et les poils pubiens à apparaitre vers 10 ou 11 ans. Les premières règles (menstruations) surviennent vers l’âge de 12 ou 13 ans, mais peuvent débuter avant ou après, tout en demeurant dans les limites de la normale. Chez les garçons, la croissance des testicules et l’apparition des poils pubiens se font à partir de l’âge de 11 ou 12 ans. Qu’est-ce que la puberté précoce ? On parle de puberté précoce quand les signes de puberté (tels que le développement des seins ou des testicules, ou l’apparition des poils pubiens) surviennent à un âge plus jeune que la normale. Selon la plupart des médecins, cela veut dire avant l’âge de 8 ans pour les filles, et avant l’âge de 9 ans pour les garçons. | | Version 4.0 | Precocious Puberty Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. 10/13 Page 1 de 3

214 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Les hormones qui démarrent la puberté entraînent une poussée de croissance accompagnée d’une croissance osseuse rapide. Quand la puberté est précoce, cette maturation rapide des os résulte en un temps de croissance écourté. Ces enfants auront une taille adulte petite, inférieure à la normale. Quels sont les facteurs de risque d’une puberté précoce ? Les facteurs de risque incluent : Radiothérapie à la tête ou au cerveau, plus particulièrement à des doses de 18 Gy (1800 cGy ou 1800 rad) ou • plus, dont les champs d’irradiation suivants : Crâne (la tête et/ou le cerveau) – Orbite (l’oeil ou l’orbite de l’oeil) – Région nasopharyngée (la région au dessus du palais de la bouche) – Région infra-temporale (côté du visage en dessous des pommettes) ou l’oreille – • Sexe féminin Jeune âge au moment des traitements anticancéreux • La puberté précoce est plus fréquente chez les enfants en surpoids. Pourquoi une puberté précoce ? L’hypothalamus et l’hypophyse peuvent subir des dommages suite aux irradiations. Dans un tel cas, les glandes pourraient libérer des hormones indiquant aux ovaires chez les filles (aux testicules chez les garçons) de débuter la production d’hormones féminines (ou masculines chez les garçons), malgré que ce ne soit pas le temps normal. Chez certains enfants, une puberté précoce peut par contre être due à des anomalies des ovaires, des testicules, ou des glandes surrénales. Des tests détermineront si la cause de la puberté précoce se situe au cerveau ou ailleurs. Quel est le suivi recommandé ? On recommande à tous les enfants ayant survécu un cancer pédiatrique de se faire examiner par un médecin au moins une fois par an. Cet examen devrait inclure les mesures de taille et de poids ainsi qu’une évaluation du stade de développement pubertaire. Si le médecin trouvait des signes de croissance accélérée ou de puberté précoce, il pourrait indiquer une prise de sang pour doser les hormones sexuelles : l’hormone folliculostimulante (FSH) et l’hormone lutéinisante (LH) produites par l’activation de l’hypophyse; l’oestradiol par les ovaires; la testostérone par les testicules. Une radiographie pourrait parfois être indiquée pour mesurer le stade de maturation squelettique (l’âge osseux) de l’enfant. Quel est le traitement de la puberté précoce ? Advenant un problème, le médecin devrait référer l’enfant à un endocrinologue (médecin spécialiste de la prise en - charge des problèmes hormonaux). Certains médicaments peuvent être prescrits pour arrêter la puberté tempo rairement et ralentir la vitesse de la maturation osseuse. Il est également important d’évaluer et de gérer l’impact psychologique que peut entraîner la puberté précoce chez les enfants. À cause d’une apparence physique mature, les gens risquent d’oublier que ce ne sont que des enfants de leur véritable âge chronologique. Écrit par Debra Kent, RN, MSN, CPNP, Cancer Survivorship Center, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Révisé par Dr Lillian R. Meacham, MD; Priscilla Rieves, MS, RN, CPNP; Dr Charles Sklar, MD; Dr Julie Blatt, MD; Peggy Kulm, RN, MA; et Marcia Leonard, RN, PNP. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Precocious Puberty | Version 4.0 | 10/13 Page 2 de 3

215 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org www.cancer.ca La société canadienne du cancer, L’Encyclopédie canadienne du cancer, http://info.cancer.ca/cce-ecc Noter: Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété » ainsi que les fiches « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health Links: « Introduction to Late Effects Guidelines Health et » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le Links : Le terme « Contenu informatif » désigne Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, », que ce soit sous forme électronique ou imprimée (y compris tout Health Link » ou « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ou intitulé « format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les À l’attention des médecins et autres professionnels de la santé autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en Aucune garantie d’exactitude ni d’exhaustivité date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo gy Group et parties liées - : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Precocious Puberty | Version 4.0 | 10/13 Page 3 de 3

216 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Précautions Pour les Individus Sans Rate Fonctionnelle La rate, c’est quoi ? - La rate est un organe situé du coté gauche, vers le haut de l’abdomen, sous les côtes, der - rière l’estomac. Une rate normale a à peu près la grosseur du poing. Elle produit des anti corps et filtre les bactéries du sang. Ainsi, la rate aide le corps à combattre l’infection. Quels sont les facteurs de risque pour une rate non- fonctionnelle ? Intervention chirurgicale ayant retiré la rate (splénectomie) • • Radiothérapie à la rate à forte dose, c’est-à-dire 40 Gy (4000 cGy ou 4000 rad) ou plus • Maladie chronique et active du greffon contre l’hôte (cGVHD), suivant une greffe de moelle osseuse ou une greffe de cellules souches. Quels sont les problèmes qui peuvent survenir chez un individu sans rate fonctionnelle ? Une personne sans rate ou dont la rate ne fonctionne plus est plus à risque de développer des infections graves. Une telle infection peut être mortelle si elle n’est pas traitée tout de suite. Communément, les infections chez les individus sans rate fonctionnelle sont provo - quées par des bactéries encapsulées. Ces bactéries ont une couche externe qui les protège du système immunitaire du corps. Elles incluent notamment le Haemophilus influenzae , Streptococcus pneumoniae Neisseria meningitidis et . Quels sont les signes d’une infection ? La fièvre est un signe d’infection. Souvent, la fièvre est causée par un virus (exemple : la grippe) et non par une bac - térie dangereuse. Par contre, sans faire de culture sanguine, il est impossible de savoir si l’on a affaire à une bactérie et si oui, laquelle. Donc, on fait une prise de sang et on test l’échantillon pour la présence de bactéries. Les résultats, , entre temps, Donc toutefois, peuvent mettre quelques heures ou parfois quelques jours à revenir du laboratoire. il est nécessaire de traiter avec des antibiotiques comme si c’était une infection sévère . Ceci sera le processus . chaque fois que vous aurez de la fièvre Parmi les autres symptômes d’une infection, vous pourriez vous sentir plus fatigué que d’habitude ou avoir des douleurs musculaires, des frissons, des maux de tête, vomissements, diarrhée, ou mal de ventre. Ces symptômes peuvent signaler une infection, même si vous n’avez pas de fièvre. Consultez votre médecin chaque fois que vous développez de tels symptômes. À tout signe de maladie, prenez votre température régulièrement. Si vous n’êtes pas sûr si oui ou non vos symptômes sont signes d’infection, mieux vaut appeler votre médecin et lui demander conseil. Que dois-je faire en cas de fièvre ? : vous devez Si vous avez 38,3ºC (101 ºF) de température ou plus, Consulter un médecin • immédiatement (même si vous prenez déjà des antibiotiques) Dire au médecin que vous n’avez pas de rate fonctionnelle • Rapporter tous vos symptômes • (tels que ceux notés ci-dessus) • pour analyse et culture Vous faire faire une prise de sang | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Splenic Precautions | Version 4.0 | 10/13 Page 1 de 4

217 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Recevoir un antibiotique puissant (par injection intraveineuse ou intramusculaire), au moins jusqu’à ce que les • résultats de la culture soient disponibles. Est-ce que je peux faire quelque chose pour prévenir les infections ? : Les vaccins diminuent les chances d’attraper une infection sévère. Vaccins On vous recommande de vous faire de type B (Hib) vacciner contre le pneumocoque, le méningocoque et l’ Haemophilus influenzae . Vérifiez auprès de votre médecin si vous avez reçu ces trois vaccins et si vous avez besoin de rappels (doses supplémentaires suivant une première vaccination). Le vaccin contre le pneumocoque a besoin d’un rappel au moins 5 ans après - la première dose. De plus, il existe maintenant deux types de vaccin contre le pneumocoque (conjugué et polysac charidique), qui sont à prendre combinés plutôt qu’au choix pour obtenir une protection améliorée. Consultez votre médecin pour vérifier si vous avez reçu les deux types, et si ce n’est pas le cas, fixez un rendez-vous pour recevoir toute dose manquante. Nombreux médecins recommandent aussi le vaccin annuel contre la grippe (influenza) pour réduire le risque de complications bactériennes suite à la grippe. Il est important de comprendre que, même si . aucun vaccin ne protège à 100% , car vous avez été vacciné, vous demeurez à risque d’infection : Certains médecins recommandent la prise d’un antibiotique quotidien à titre préventif (prophylaxie), Antibiotiques tel la pénicilline, dans le but de prévenir les infections bactériennes sévères. D’autres médecins préfèrent vous laisser - la prescription afin que vous commenciez des antibiotiques aux premiers signes de maladie. D’autres encore recom mandent une prescription d’antibiotiques uniquement quand vous voyagez dans une zone sans accès facile aux soins De toute façon, que vous preniez des antibiotiques ou pas, il est essentiel de consulter un médecin médicaux. chaque fois que vous aurez de la fièvre, des frissons, ou n’importe quel autre symptôme de maladie grave, et ce, dès que vous développez des symptômes . Un bref délai de quelques heures risque d’être dangereux pour vous. Si vous aviez une infection bactérienne, elle risquerait de s’aggraver très rapidement. Autres précautions : N’ayant pas de rate fonctionnelle, vous êtes plus à risque de développer des problèmes en lien avec les suivantes : : Si vous voyagez vers des pays où la malaria est fréquente, il vous faudra prendre des précautions La malaria spéciales pour éviter d’attraper la malaria. Demandez à votre médecin de vous prescrire des médicaments contre la malaria avant de voyager. Pendant le voyage, appliquez de l’insectifuge (chassemoustiques) et utilisez toute autre mesure de protection disponible, tels que moustiquaires et vêtements protecteurs. Les morsures animales ou humaines : Les morsures animales ou humaines peuvent amener des infections bac - - tériennes graves. Si la peau a été brisée, consultez immédiatement un médecin pour qu’il vous prescrive des antibi otiques. : Les personnes qui n’ont pas de rate fonctionnelle sont plus à risque de développer une infection causée Les tiques , parasites transmis par la tique du chevreuil. Ces tiques sont communément trouvées au nord-est Babesia par les du microbe qui est des États-Unis, au sud-est du Canada, et dans certains pays de l’Europe. (Note : il ne s’agit pas - responsable de la maladie de Lyme). Lorsque vous vous promenez en nature dans une région infestée, utilisez de l’in Babesia sectifuge et des vêtements protecteurs. Si vous vous faites piquer par une tique dans une région infestée de , retirez la tique et contactez votre médecin pour savoir quoi faire. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Splenic Precautions | Version 4.0 | 10/13 Page 2 de 4

218 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Comment mon médecin saura-t-il que je n’ai pas de rate fonctionnelle ? Assurez-vous d’informer tous vos médecins, dentistes et autres professionnels de la santé, que vous n’avez pas de pour porter un bracelet ou collier d’alerte médicale (avec l’emblème) rate fonctionnelle. Vous devriez également - désigner que vous n’avez pas de rate fonctionnelle, en cas d’urgence médicale où vous seriez incapable de commu niquer. Nous vous recommandons aussi de porter sur vous une carte portefeuille telle que la suivante. Elle indiquera aux professionnels de la santé quoi faire en cas de fièvre chez un patient sans rate fonctionnelle. Carte portefeuille pour patients sans rate fonctionnelle Téléphone du médecin : ____________________________ _______________________________________________ Nom du médecin : Nom du patient : _________________________________________________ Patient asplénique ALERTE MÉDICALE Pliez ici ALERTE MÉDICALE : Patient asplénique Ce patient est asplénique et à risque d’infections graves et potentiellement mortelles. Une consultation médicale immédiate est nécessaire en cas de fièvre ≥ 38,3°C (101°F) ou autres signes de maladie grave. La prise en charge suggérée inclut: Examen physique, formule sanguine complète (FSC), et culture sanguine. 1. 2. Administration d’un antibiotique à large spectre à action prolongée par voie parentérale (ex : ceftriaxone); surveillance clinique et monitorage serré en atten - dant les résultats de la culture sanguine. 3. Hospitalisation et antibiothérapie élargie (ex : ajout de vancomycine) peuvent s’avérer nécessaires selon les circonstances, notamment la présence d’une leucocytose, neutropénie, ou changement significatif du FSC de base; apparence clinique toxique; fièvre ≥ 40 °C (104°F); méningite, pneumonie, ou autre foyer d’infection important; signes de choc septique; ou antécédent médical d’une infection grave | Version 4.0 | Splenic Precautions 10/13 | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Page 3 de 4

219 Health Link Vivre en santé après le traitement pour un cancer pédiatrique Écrit par Teresa Sweeney, RN, MSN, CPNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis, TN. Révisé par Dr Smita Bhatia, MD, MPH; Dr Julie Blatt, MD; Dr Melissa M. Hudson, MD; Dr Kevin Oeffinger, MD; Lise Yasui, Wendy ® ; Lisa Bashore, PhD, RN, CPNP, CPON®, et le . Landier, RN, PhD, CPNP, CPON COG Late Effects Committee Traduit par Danielle Buch, éditrice/rédactrice médicale, Unité de recherche clinique appliquée, CHU Sainte-Justine, Montréal, QC, Canada. Pour plus d’information sur la santé des survivants d’un cancer pédiatrique, nous vous invitons à consulter les sites web suivants : www.survivorshipguidelines.org La société canadienne du cancer, www.cancer.ca http://info.cancer.ca/cce-ecc L’Encyclopédie canadienne du cancer, Dans la série Health Links, le terme « cancer pédiatrique » signifie un cancer qui se présente pendant l’enfance, l’adolescence, ou le début de l’âge Noter: adulte. La série de fiches Health Links est conçue pour informer les survivants d’un cancer pédiatrique sur des sujets touchant leur état de santé, quel que soit l’âge auquel ce cancer soit survenu pendant l’enfance, l’adolescence, ou le début de l’âge adulte. Décharge de responsabilité et avis relatif aux droits de propriété Introduction to Late Effects Guidelines Health » ainsi que les fiches « Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Health Links: « et Links » qui les accompagnent ont été développés par le Children’s Oncology Group en collaboration entre le Late Effects Committee et Nursing Discipline. Ils sont maintenus à jour par le : Le terme « Contenu informatif » désigne Long-Term Follow-Up Guidelines Core Committee du Children’s Oncology Group et les groupes de travail associés. À titre d’information seulement tout contenu et toute information à l’intérieur de chaque document ou série de documents en provenance du Children’s Oncology Group concernant les effets tardifs du traitement et des soins du cancer, », que ce soit sous forme électronique ou imprimée (y compris tout Health Link Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers ou intitulé « » ou « format numérique, courriel, ou téléchargement du site web). Tout Contenu informatif est donné à titre d’information seulement et ne remplace pas l’avis d’un médecin ni le suivi médical, le diagnostic, ou le traitement par un médecin ou autre professionnel de la santé À l’attention des patients souffrant de cancer (ou si cela concerne un enfant, à l’attention des parents ou tuteurs) : Veuillez obtenir l’avis d’un médecin ou d’un autre professionnel de la santé qualifié pour toute question concernant l’état de santé; ne vous fiez pas au Contenu informatif. Le Children’s Oncology Group est un organisme de recherche et ne pourvoit pas de prise en charge ni de traitement médical individualisé. À l’attention des médecins et autres professionnels de la santé : Le Contenu informatif ne remplace pas votre bon jugement clinique ni votre avis professionnel et n’exclut pas les autres critères légitimes pour le dépistage, conseils pratiques, ou interventions concernant certaines complications liées au traitement du cancer pédiatrique. Le Contenu informatif ne tient pas non plus à exclure toute autre procédure de suivi raisonnable. Le Contenu informatif est conçu à titre de courtoisie et non comme document unique pour guider l’évaluation des survivants de cancers pédiatriques. Le Children’s Oncology Group reconnaît que les décisions particulières sont le privilège du patient, de sa famille, et du professionnel de la santé. Aucun test particulier, produit, ni procédure n’est spécifiquement endossé par le Contenu informatif, le Children’s Oncology Group, ses membres ou associés. : Quoique le Children’s Oncology Group ait fait tous les efforts nécessaires pour s’assurer de l’exactitude et de l’exhaustivité du Contenu informatif en Aucune garantie d’exactitude ni d’exhaustivité date de publication, aucune garantie ni représentation, expresse ou implicite, n’est faite concernant l’exactitude, la fiabilité, l’exhaustivité, la pertinence, ou l’actualité du Contenu informatif. - Aucune responsabilité de la part du Children’s Oncology Group et des parties liées/ Entente d’indemnité et de dégagement de toute responsabilité en ce qui concerne le Children’s Oncolo : Le Children’s Oncology Group ainsi que ses affiliés, membres affiliés, ou associés n’assument aucune responsabilité en ce qui concerne les dommages découlant de l’utilisa gy Group et parties liées - tion, l’examen, ou l’accès au Contenu informatif. Vous acceptez les termes d’indemnité suivants : (i) les « Parties indemnisées » incluent les auteurs et contributeurs au Contenu informatif, ainsi que tous les dirigeants, directeurs, représentants, employés, agents et membres du Children’s Oncology Group et de ses organismes affiliés; (ii) en utilisant, examinant, ou accédant au Contenu informatif, vous acceptez, à vos propres frais, d’indemniser, de défendre, et de dégager de toute responsabilité les Parties indemnisées de toute perte, préjudice, ou dommage (incluant les frais d’avocats et autres frais) résultant de toute réclamation, démarche, poursuite, procès, ou demande en lien avec ou provenant de l’utilisation, l’examen, ou l’accès au Contenu informatif. : Le Contenu informatif est protégé par la loi internationale concernant les droits d’auteur et de toute autre propriété intellectuelle tant aux États-Unis que mondialement. Le Droits de propriété Children’s Oncology Group détient les droits exclusifs sur le contenu, le titre, et les intérêts du Contenu informatif et revendique tous les droits d’auteur et de propriété intellectuelle prévus par la loi. Il est entendu par la présente que vous respectiez le transfert de tous les droits en faveur du Children’s Oncology Group en prenant certaines démarches dans un deuxième temps, telles que la signature de formulaires de consentement et d’autres documents légaux et la limitation de toute dissémination ou de reproduction du Contenu informatif. | Copyright 2013 © Children’s Oncology Group. Tous droits réservés mondialement. Splenic Precautions | Version 4.0 | 10/13 Page 4 de 4

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