about brain tumors a primer 1

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1 ABOUT BRAIN TUMORS about brain A Primer for Patients and Caregivers tumors a primer for patients and caregivers

2 about brain tumors a primer for patients and caregivers 8550 W. Bryn Mawr Avenue, Suite 550 Chicago, IL 60631 CareLine: 800-886-ABTA (8) Email: [email protected] Website: www.abta.org

3 ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATION Founded in 1973, the American Brain Tumor Association (ABTA) was the first national nonprofit organization dedicated solely to brain tumor research. For over 40 years, the ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care. To learn more about the ABTA, visit www.abta.org . Brain Tumor Primer: Information contained in this publication was originally published in two volumes as ; and Living with a Brain Tumor: A Guide for Newly A Comprehensive Introduction to Brain Tumors, 9th Edition Diagnosed Patients and Their Families . We gratefully acknowledge the following for their assistance in reviewing this information: • Gary Hill, PsyD, LMFT, CSADC; owner, GRH Terri S. Armstrong, PhD, ANP-BC, FAANP; • Consulting LLC, Northfield, IL associate professor, Department of Family Health at University of Texas Health Science Center at • Bridget McCarthy, PhD; research associate Houston; adjunct associate professor, Department professor, epidemiology, UIC Institute for Health of Neuro-Oncology, MD Anderson Cancer Center Research and Policy, Chicago, IL Jill S. Barnholtz-Sloan, PhD; associate • • Sridhar Nimmagadda, PhD; assistant professor of professor, general medical sciences (oncology), radiology, medicine and oncology, Johns Hopkins Department of Epidemiology and Biostatistics, University, Baltimore, MD Center for Proteomics and Bioinformatics, Case Betty Owens, RN, MSN; University of Colorado • Comprehensive Cancer Center, Cleveland, OH Health Sciences Center, Denver, CO • Steven Brem, MD; professor of neurosurgery, • Mady Stovall, RN, MSN, ANP-BC; neuro-oncology director of neurosurgical oncology; co-director, nurse practitioner, UCLA Neuro-Oncology Brain Tumor Center, Penn Medicine, Philadelphia, Program at The Ronald Reagan UCLA Medical PA Center, Los Angeles, CA • Susan Chang, MD; professor in residence and vice • Michael Taylor, MD, PhD, FRCS(C); assistant chair of neurological surgery; director, Division professor, Departments of Surgery and Laboratory of Neuro-Oncology, Department of Neurological Medicine and Pathobiology, University of Toronto, Surgery, University of California, San Francisco, Hospital for Sick Children, Toronto, Ontario, San Francisco, CA Canada • The Department of Behavioral Medicine at Michael A. Vogelbaum MD, PhD; associate • the Chicago Institute for Neurosurgery and director, Brain Tumor and Neuro-Oncology Neuroresearch, Chicago, IL Center; director, Center for Translational • The Epilepsy Foundation of Minnesota, St. Paul, Therapeutics, Cleveland Clinic, Cleveland, OH MN Vicky Holets Whittemore, PhD; program director, • • Mark R. Gilbert, MD; professor, Department of Synapses, Channels and Neural Circuits Cluster; Neuro-Oncology, Division of Cancer Medicine, National Institute of Neurological Disorder and The University of Texas MD Anderson Cancer Stroke/National Institutes of Health, Bethesda, MD Center, Houston, TX We also thank Gail Segal for her contributions to early versions of Brain Tumor Primer. This publication is not intended as a substitute for professional medical advice and does not provide advice on treatments or conditions for individual patients. All health and treatment decisions must be made in consultation with your physician(s), utilizing your specific medical information. Inclusion in this publication is not a recommendation of any product, treatment, physician or hospital. C opyright © 2015 ABTA REPRODUCTION WITHOUT PRIOR PERMISSION IS PROHIBITED

4 TABlE Of CONTENTS Table of Contents Introduction 1 Brain Tumor Basics ... 7 2 Parts of the Brain ... 12 3 Types of Brain Tumors ... 16 4 Causes and Risk Factors ... 29 5 Symptoms and Side Effects ... 34 ... 6 38 Diagnosis Seizures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 7 8 Pediatric Brain Tumors ... 57 Coping 9 ... 64 10 For the Caregiver ... 73 11 Brain Tumor Facts and Statistics ... 77 80 ... Brain Tumor Terminology 12 5 ABOUT BRAIN TUMORS

5 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers About Brain Tumors A Primer for Patients and Caregivers INTRODUCTION Learning you or your loved one has a brain tumor can be very frightening. You may know little about tumors and even less about the brain. You might be confused about the new terms you are hearing, angry because you need to make decisions you are not prepared for and dazed by all of the changes in your life. As you begin this new path in life, please know that you are not alone. The American Brain Tumor Association (ABTA) is here to help you throughout this journey. This book was written to help you, your family and your friends learn more about brain tumors. We offer information and resources and share suggestions and experiences from patients and families who have lived with a brain tumor. We hope this knowledge will offer a degree of comfort and help you feel more in control of your life during this difficult time. Our team of health care professionals can provide additional information about tumors, treatment and support resources. We also encourage you to visit our website at www.abta.org. For more information, please call our CareLine at 800-886-ABTA (2282) or send us an email at [email protected] AMERICAN BRAIN TUMOR ASSOCIATION www.abta.org 6

6 THE BRAIN TUMOR GUIDE A Primer for Patients and Caregivers For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS Chapter 1: Brain Tumor Basics Living creatures are made up of cells. The adult body normally forms new cells only when they are needed to replace old or damaged ones. Infants and children create new cells to complete their development in addition to those needed for repair. A tumor develops if normal or abnormal cells multiply when they are not needed. A brain tumor is a mass of unnecessary cells or central spine canal growing in the brain . There are two basic kinds of brain tumors – primary brain tumors and metastatic brain tumors. Primary brain tumors start and tend to stay, in the brain. Metastatic brain tumors begin as cancer elsewhere in the body and spread to the brain. When doctors describe brain tumors, they often use the words “benign” or “malignant.” Those descriptions refer to the degree of malignancy or aggressiveness of a brain tumor. It is not always easy to classify a brain tumor as “benign” or “malignant” as many factors other than pathological features contribute to the outcome. > Each year more than 68,470 people in the United States are diagnosed with a primary brain tumor and more than twice that number are diagnosed with a metastatic tumor. ABOUT BRAIN TUMORS 7

7 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers travel to distant parts of the brain and spine by way PRIMARY BRAIN TUMORS of the cerebrospinal fluid. Some malignant tumors, A tumor that starts in the brain is a primary however, do remain localized to a region of the brain tumor. Glioblastoma multiforme, brain or spinal cord. astrocytoma, medulloblastoma and ependymoma are examples of primary brain tumors. Primary brain tumors are grouped into benign tumors and Benign Tumors malignant tumors. • Slow growing Benign brain tumors • Distinct borders A benign brain tumor consists of very slow- • Rarely spread growing cells, usually has distinct borders and rarely spreads. When viewed under a microscope, Malignant Tumors these cells have an almost normal appearance. • Usually rapid growing Surgery alone might be an effective treatment for • Invasive this type of tumor. A brain tumor composed of • Life threatening benign cells, but located in a vital area, can be considered life-threatening – although the tumor and its cells would not be classified as malignant. METASTATIC BRAIN TUMORS Cancer cells that begin growing elsewhere in the Malignant brain tumors body and then travel to the brain form metastatic A malignant brain tumor is usually rapid- brain tumors. For example, cancers of the lung, growing, invasive and life-threatening. Malignant breast, colon and skin (melanoma) frequently brain tumors are sometimes called brain cancer. spread to the brain via the bloodstream or a However, since primary brain tumors rarely magnetic-like attraction to other organs of the spread outside the brain and spinal cord, they do body. not exactly fit the general definition of cancer. All metastatic brain tumors are, by definition, malignant and can truly be called “brain cancer.” Cancer is a disease defined by: • Unregulated growth of abnormal cells TUMOR NAMES Tumors are diagnosed, and then named, based • Abnormal cells that grow into or around parts of the body and interfere on a classification system. Most medical centers with their normal functioning now use the World Health Organization (WHO) • Spread to distant organs in the body classification system for this purpose. TUMOR GRADING Brain tumors can be called malignant if they: Tumors are graded to facilitate communication, • Have the characteristics of cancer cells plan treatment and predict outcomes. The grade • Are located in a critical part of the of a tumor indicates its degree of malignancy. brain • Are causing life threatening damage Using the WHO grading system, grade I tumors are the least malignant and are usually associated with long-term survival. The tumors grow slowly and Malignant brain tumors that are cancerous can have an almost normal appearance when viewed spread within the brain and spine. They rarely through a microscope. Surgery alone might be an spread to other parts of the body. They lack distinct effective treatment for this grade of tumor. Pilocytic borders due to their tendency to send “roots” into astrocytoma, craniopharyngioma and many tumors nearby normal tissue. They can also shed cells that AMERICAN BRAIN TUMOR ASSOCIATION www.abta.org 8

8 BRAIN TUMOR BASICS CHAPTER 1: of neurons – for example, gangliocytoma and ARTERIAl BlOOD flOW ganglioglioma – are grade I tumors. 1 Grade II tumors are relatively slow-growing and Artery Bringing have a slightly abnormal microscopic appearance. Blood from the Heart Some can spread into nearby normal tissue and to the Brain Aorta/Heart recur. Sometimes these tumors recur as a higher grade. Grade III tumors are by definition malignant although there is not always a sharp distinction between a grade II and a grade III tumor. The cells of a grade III tumor are actively reproducing abnormal cells which grow into nearby normal brain tissue. These tumors tend to recur, often as a higher grade. The most malignant tumors are given a grade of IV. They reproduce rapidly, can have a bizarre appearance when viewed under the microscope and easily grow into surrounding normal brain tissue. These tumors form new blood vessels so they can maintain their rapid growth. They also have areas of dead cells in their center. Glioblastoma is the most common example of a grade IV tumor. Tumors often contain several grades of cells. The Grade is assigned based on the tumor’s highest or most malignant grade of cell determines microscopic appearance using some or all of the following criteria: the grade, even if most of the tumor is a lower grade. Some tumors undergo change and a benign Similarity to normal cells (atypia) • growth might become malignant or, as previously Rate of growth (mitotic index) • mentioned, a lower-grade tumor might recur as Indications of uncontrolled growth • a higher-grade tumor. Your doctor can tell you if • Dead tumor cells in the center of the your tumor might have this potential. tumor (necrosis) Potential for invasion and/or spread • Please ask a member of your healthcare team to (infiltration) based on whether or not complete the form on the next page. Use it to it has a definitive margin (diffuse or learn the exact spelling of your tumor type and focal) its location, your medications, and resources for Blood supply (vascularity) • additional information. 9 ABOUT BRAIN TUMORS

9 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers lOBES Of THE BRAIN I TAKE THESE MEDICATIONS: WHERE IS MY TUMOR? WHEN IS MY NEXT APPOINTMENT? WITH WHOM? ____________________________________ 800-886-ABTA (2282) or Malignant Astrocytoma Glioblastoma, also called Glioblastoma Multiforme Astrocytoma grade III, also called Anaplastic Astrocytoma or Astrocytoma grade IV Meningioma Astrocytoma grade II Pituitary Adenoma, also called Pituitary Tumor Ependymoma Oligoastrocytoma Other: __________________________________________________ Astrocytoma grade I Oligodendroglioma Medulloblastoma Metastatic tumor (primary site: ____________________________) £ National Institute of Neurological Disorders & Stroke (NINDS) £ £ £ £ £ £ £ £ £ £ American Brain Tumor Association (ABTA) £ www.abta.org Cancer Information Service (CIS) of the National Cancer Institute (NCI) www.ninds.nih.gov 800-352-9424 www.cancer.gov 800-422-6237 Phone: ___________________________________________________ MY NURSE’S NAME IS: THE NAME Of MY TUMOR IS: fOR INfORMATION ABOUT BRAIN TUMORS: 75 | www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 10

10 CHAPTER 1: BRAIN TUMOR BASICS WORlD HEAl TH ORGANIZATION (WHO) GRADING SYSTEM Grade III Tumor Grade I Tumor Actively reproducing abnormal cells • • Slow-growing cells • Abnormal appearance under a • Almost normal appearance under a microscope microscope • Least malignant Infiltrate adjacent normal brain tissue • Usually associated with long-term • Tumor tends to recur, often as a higher • survival grade Grade II Tumor Grade IV Tumor Relatively slow-growing cells • • Abnormal cells which reproduce rapidly Very abnormal appearance under a • • Slightly abnormal appearance under a microscope microscope Form new blood vessels to maintain rapid • Can invade adjacent normal tissue • growth Can recur as a higher grade tumor • • Areas of dead cells (necrosis) in center ABOUT BRAIN TUMORS 11

11 THE BRAIN TUMOR GUIDE For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Parts of the Brain Chapter 2: Groups of cells, similar in appearance and with the same function, form tissue. The brain is a soft mass of supportive tissues and nerve cells connected to the spinal cord. Nerves in the brain and spinal cord transmit messages throughout the body. The brain and spinal cord together form the central nervous system (CNS). The central nervous system is the core of our existence. It controls our personality – thoughts, memory, intelligence, speech, understanding and emotions; our senses – vision, hearing, taste, smell and touch; our basic body functions – breathing, heart beat and blood pressure; and how we function in our environment – movement, balance and coordination. Learning about the normal workings of the brain and spine will help you understand the symptoms of brain tumors, how they are diagnosed and how they are treated. Note: For a complete glossary of brain tumor terminology, see Chapter 12 “Brain Tumor Terminology” on page 79. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 12 www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 12

12 CHAPTER 2: PARTS Of THE BRAIN MAJOR PARTS Of THE BRAIN CSf AND VENTRIClES Parietal lobe Subarachnoid Space lateral frontal lobe Ventricles Occipital lobe 2 Third Ventricle Temporal lobe Pons Cerebellum fourth Ventricle Medulla Oblongata view from bottom of brain CRANIAl NERVES – Smell ACTORY I Olf – Vision II OPTIC Olfactory Bulb III OCUlOMOTOR – Eye Movement & Pupil Size – Eye Movement IV TROCHlEAR – Sensation in the Face, Nose, V TRIGEMINAl Optic Chiasm Mouth, Teeth, Cornea; Chewing and Facial Expression VI ABDUCENS – Eye Muscle Pituitary Gland – fACIAl Facial Expression, Tears, Saliva, VII ⁄ ² Taste (front of tongue) ³ Pons Hearing, Balance VIII VESTIBUlOCOCHlEAR – (also called Acoustic Nerve) Throat Movement, GlOSSOPHARYNGEAl IX – Cerebellum 1 of tongue) Sensation in the Throat, Taste (back ⁄ ³ – VAGUS Sensation in the Throat and Windpipe; X Muscles of the Throat, Windpipe organs of the Chest & Abdomen XI ACCESSORY Movement of the Neck – Medulla Oblongata – Tongue Movement & XII HYPOGlOSSAl Spinal Cord Swallowing 13 ABOUT BRAIN TUMORS

13 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers CROSS SECTION Of THE BRAIN Thalamus Skull Bone Hypothalamus Optic Nerve Cerebrum Cingulate Cortex Olfactory Bulb frontal Sinus Corpus Callosum Pituitary Gland Cerebellum Sella Turcica Sphenoid Sinus Tectum Pons Midbrain Medulla Oblongata Vertebrae Spinal Cord THE PITUITARY GlAND BONES Of THE SKUll Hypothalamus frontal Bone Sphenoid Bone Parietal Bone Pituitary Gland Pituitary Stalk Nasal Bone Occipital Bone Temporal Bone Sella Turcica www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 14

14 CHAPTER 2: PARTS Of THE BRAIN THE TENTORIUM THE VENTRIClES lateral Cerebral Hemispheres Ventricles lateral Ventricle Third Ventricle 2 Above the tentorium is “supratentorial” Tentorium the Below tentorium is “infratentorial” fourth or the Ventricle “posterior fossa” Spinal fourth Third Cord Ventricle Ventricle SIDE VIEW Of THE BRAIN Dura Mater Arachnoid Subarachnoid Space Skull Pia Mater Choroid Plexus foramen of Monro Pineal Gland Midbrain Tentorium Pituitary Gland Cerebellum Sphenoid Sinus Pons Choroid Plexus Medulla Oblongata fourth Ventricle Spinal Cord 15 ABOUT BRAIN TUMORS

15 For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS A Primer for Patients and Caregivers THE BRAIN TUMOR GUIDE Types of Chapter 3: Brain Tumors This is an introduction to the more common brain tumors, their typical symptoms and locations and how they might be treated. Please remember that your tumor is unique and might not conform to the “average” characteristics described. The tumor names and their organization in this chapter are based on the World Health Organization (WHO) brain tumor classification system. For more information about specific tumors www.abta.org. and treatments visit www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 16 www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 16

16 CHAPTER 3: TYPES Of BRAIN TUMORS ASTROCYTOMA ASTROCYTE Astrocytomas are tumors that are thought to arise Astrocytes are the from astrocytes – cells that make up the “glue- cells that make up like” or supportive tissue of the brain. These the “glue-like” or supportive tissue tumors are “graded” by the pathologist to indicate of the brain. how normal or how abnormal, the cells of the tumor look under the microscope. The WHO system grades astrocytomas on a scale from I to 3 IV. Grade I tumors include pilocytic astrocytomas, cannot be completely removed. Or, the residual which are usually localized (limited in growth) tumor may be carefully watched. In a “watchful tumors, that are often cured through surgical waiting” situation, follow-up MRI scans are done at removal. Grade II to IV tumors have increasing regular intervals to monitor for possible regrowth. degrees of malignancy and although surgery is If the tumor recurs, re-operation and some form of beneficial, it is not curative for these tumors. radiation are options. Some pilocytic tumors, such Grade II astrocytomas have slightly unusual as most optic gliomas, cannot be safely removed looking cells. The cells of a grade III and IV because of their location and initial treatment may astrocytoma are very abnormal in appearance. In involve observation only. this section we describe only the more common of The term “anaplastic” (or “malignant”) pilocytic these tumors, pilocytic astrocytoma and anaplastic astrocytoma is used only when the tumor has astrocytoma. developed an extensive blood supply around the Pilocytic Astrocytoma tumor or the tumor contains dead cells (necrosis). Also called juvenile pilocytic astrocytoma These rare tumors require more aggressive These grade I astrocytomas are usually well- treatment than a benign pilocytic astrocytoma. tumors – meaning they defined, non-infiltrating Anaplastic Astrocytoma tend to stay in the area in which they started Also called grade III astrocytoma or malignant and do not spread into surrounding tissue. They astrocytoma generally form cysts or may be enclosed within An anaplastic astrocytoma is a grade III tumor. a cyst. Although these are usually slow-growing The word “anaplastic” means malignant. tumors, they can become very large. Astrocytomas often contain a mix of cells and These tumors represent about 5–6% of all gliomas cell grades, but brain tumors are graded by the and are the most common glioma in children. They highest grade (most abnormal) cell seen in the are generally diagnosed in children and young tumor. These tumors tend to have tentacle-like adults under the age of 20 and are rarely seen in projections that grow into surrounding tissue, older adults. The most common locations include making them difficult to completely remove the optic nerve (an “optic glioma”), the optic during surgery. chiasm near the hypothalamus, thalamus, basal This grade of tumor tends to occur in males more ganglia, cerebral hemispheres and the cerebellum often than females and most frequently in people (i.e., a cerebellar astrocytoma). ages 45 and older. This tumor is the “most benign” tumor of the The treatment options your doctor outlines will be astrocytomas. Pilocytic astrocytomas are generally based on the size and location of the tumor, what it considered benign tumors and are often cured looks like under the microscope, if and how far the by surgery alone. In adults and older children, tumor has spread, any previous treatment radiation therapy might follow surgery if the tumor 17 ABOUT BRAIN TUMORS

17 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers and your general health. Generally, the first step BRAIN STEM GlIOMA in the treatment of an anaplastic astrocytoma is Brain stem gliomas arise in or on the brain surgery. The goals of surgery are to obtain tumor stem – the area containing all of the converging tissue for diagnosis and treatment planning, to connections from the brain to the spinal cord remove as much tumor as possible and to reduce as well as important structures involved in eye the symptoms caused by the presence of the tumor. movements, face and throat muscle control, There are some circumstances, such as certain breathing and heart rate and sensation. medical conditions or concerns about the location Between 10 and 20% of brain tumors in children of the tumor, in which a biopsy may be done in are brain stem gliomas. This tumor most often place of surgery. The tissue obtained during the affects children between 5 and 10 years old, but can biopsy is then used to confirm the diagnosis. also be found in adults generally between 30 and Because the tentacle-like cells of an astrocytoma 40 years old. Most of these tumors are astrocytomas grow into the surrounding tissue, these tumors which vary from localized grade I tumors (mostly cannot be totally removed during surgery. Partial in children) to infiltrating grade II or III tumors. removal can help decrease symptoms; the tissue However, many are never biopsied due to the obtained during that surgery confirms the type of high-risk of performing any surgical procedure tumor. in that area, which makes determination of grade impossible. In these situations, the diagnosis can Radiation is then used to treat the remaining usually be based on the MRI scan features. tumor. In general, the standard approach is external beam radiation directed to the area of Most of these tumors are classified by their tumor and a margin around it. Specialized delivery, location: such as the use of conformal radiation or intensity Cancer is a disease defined by: modulated radiation (IMRT) may be recommended. Upper brain stem (midbrain or tectum) • Although not standard treatment, there are other Middle brain stem (pons) • forms of radiation therapy available – focused or stereotactic radiosurgery, implanted radiation and Lower brain stem (cervico-medullary) • proton therapy – which may be recommended to you. Your radiation oncologist will decide which and by MRI appearance: form of radiation therapy is best for your particular • Localized (circumscribed or in one tumor. contained location) Chemotherapy, most often with the drug Diffusely infiltrating (tumor spread within • temozolomide, may be recommended immediately the area) after radiation or when the tumor recurs. Some treatment plans may still use the drugs BCNU, • Exophytic (meaning the tumor has a knob CCNU, procarbazine or cisplatin. In addition, there protruding outside of the brainstem) are also many new drugs being tested in clinical The majority of brain stem tumors occur in the studies (trials). Some physicians may choose not to pons and are diffusely infiltrating, therefore use chemotherapy for the initial tumor, “reserving” precluding the tumor’s surgical removal. A few of it for re-growth if necessary. Anaplastic astrocytomas these tumors are localized and may be reachable tend to recur and when they do, they may re-grow for resection. These tumors tend to be very slow as a grade III or a grade IV tumor. Treatment is based growing, not located in the pons and exophytic. on the grade of tumor at recurrence and location. For information on astrocytoma grade IV, see “Glioblastoma” on page 21. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 18

18 CHAPTER 3: TYPES Of BRAIN TUMORS The symptoms of a brain stem glioma depend primary brain tumors and 5–10% of childhood on the location of the tumor. The most common brain tumors. There are two age groups in which symptoms are related to eye movement this tumor tends to be seen—those up to age 14 abnormalities which may cause double vision. and again after age 45. Other symptoms include weakness or sensation Adamantinomatous (ordinary) craniopharyngioma changes of the face, swallowing difficulty and occurs in children and tends to be more cystic than hoarseness. Weakness, loss/changes in sensation or the papillary craniopharyngioma. The papillary poor coordination on one side of the body may also craniopharyngioma occurs in adults and is a more 3 occur. The tumor may also block the cerebrospinal solid tumor. fluid circulation resulting in hydrocephalus (dilatation of the fluid cavities in the brain) causing Craniopharyngiomas occur in the sellar region, headache, nausea, vomiting and gait unsteadiness. near the pituitary gland. They often involve the third ventricle, optic nerve and pituitary Treatment of a brain stem glioma is dictated by gland. These localized tumors may reach a large the tumor location, grade and symptoms. Surgery size before they are diagnosed. Malignancy and may be warranted if a tumor appears circumscribed metastasis are unknown. (contained) or exophytic. The goals of surgery are to determine the grade and type of tumor and, Increased intracranial pressure due to obstruction sometimes, removal of the tumor. A shunt may also of the foramen of monro, one of the small tunnels be placed if there is blockage of the cerebrospinal through which cerebrospinal fluid exits the fluid circulation. Radiation therapy may be used ventricles, accounts for many of the symptoms early if there are significant symptoms or it may associated with this tumor. Other symptoms result be postponed until the tumor grows or causes from pressure on the optic tract and pituitary symptoms. Chemotherapy is used at diagnosis or if gland. Obesity, delayed development, impaired the tumor progresses following radiation therapy. vision and a swollen optic nerve are common. The treatment plan is often based on whether Surgery to remove the tumor is usually the first imaging (scans) reveal characteristics similar to a step in treatment. If hydrocephalus (brain swelling) grade II or a grade IV tumor. If the tumor appears is present, a shunt may be placed during surgery. to be a grade IV tumor, treatment similar to that That shunt will help drain excess cerebrospinal used to treat glioblastoma may be considered. fluid away from the brain. A form of radiation Radiation therapy with hyperfractionation (with therapy may be suggested if all of the visible smaller dose per treatment and many more doses) tumor cannot be removed. This may include a has been used in children in order to increase focused form of radiation – such as radiosurgery the effectiveness of the therapy and decrease or conformal radiation – or a radiation source side effects. Unfortunately, this has not resulted may be implanted into the tumor cavity, such as in significant advantage over standard radiation. radioactive phosphorous. In children younger than Clinical trials using various forms, doses and age 3, radiation therapy may be delayed by the schedules of radiation therapy for newly diagnosed use of surgery or hormone therapies. Because this tumors and chemotherapy for recurrent tumors, are tumor tends to be located close to the pituitary also available (see “Clinical Trials” on page 23). gland which controls hormone balance in the body, an endocrinologist may become involved in the CRANIOPHARYNGIOMA long-term care plan. An endocrinologist is a doctor This is a benign tumor arising from small trained in treating hormone imbalances. nests of cells located near the pituitary stalk. Craniopharyngiomas represent 2–5% of all 19 ABOUT BRAIN TUMORS

19 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers EPENDYMOMA EPENDYMOMA Recent studies show that ependymomas may Ependymal cells line the originate from ependymal cells (which line the ventricles of the brain and ventricles of the brain and the center of the the center of the spinal cord. spinal cord) or from radial glial cells (cells related to early development of the brain). These are relatively rare tumors, accounting for 1–2% of all primary tumors and 6-7% of all gliomas. They found in the brain in adults and specifically in the represent about 5% of childhood brain tumors. posterior fossa in children. They are rarely found in Ependymomas are soft, greyish or red the spinal cord. tumors which may contain cysts or mineral The first step in the treatment of an ependymoma is calcifications. They are divided into four major surgery to remove as much tumor as possible. The myxopapillary (grade I), subependymomas types: amount of tumor that can be removed, however, ependymomas ependymomas (grade II) and and depends on the location of the tumor. Radiation anaplastic ependymomas (grade III). The grade is therapy is usually recommended for older children based on how much the cells look like normal and adults following surgery if all visible tumor ependymal cells, although various grading systems wasn’t removed and in some cases even after exist. The cells of a grade I tumor look somewhat complete resection. If the tumor is localized, unusual, whereas grade IV tumor cells look radiation therapy is usually given just to that area definitely abnormal. of the brain. If the tumor has spread, radiation is Subependymomas usually occur near a ventricle. usually given to the entire brain and spine, with an Myxopapillary ependymomas tend to occur in extra amount of radiation (called a “boost”) given the lower part of the spinal column. Both of these to the area of the brain where the tumor started. In ependymoma types are slow growing and are general, the role of chemotherapy in treating newly considered to be low-grade or grade I tumors. diagnosed ependymomas is not clear. However, chemotherapy may be used to treat tumors that Ependymomas are the conventional type, lowgrade have grown back after radiation therapy or to (grade 1 and II) tumors. These tumors are usually delay radiation therapy in infants and very young located along, within or adjacent to the ventricular children. system, often in the posterior fossa or in the spinal cord. Based on the appearance of the cell patterns GERM CEll TUMORS when viewed under a microscope, this group of These uncommon tumors represent 1–3% of tumors can be sub-divided into smaller groups childhood brain tumors and occur primarily based on the appearance of their cell patterns: in young people between the ages of 11 and cellular ependymomas, papillary ependymoma, clear 30. Germ cell tumors arise in the pineal or nd tancytic ependymoma. There cell ependymoma a suprasellar regions of the brain. Included in this are several other patterns as well, but regardless type of tumor are the germinoma, the teratoma, of appearance, these are all considered grade II the more aggressive embryonal carcinoma and tumors. yolk sac (endodermal sinus) tumors and the choriocarcinoma. Mixed germ cell tumors also are high-grade tumors Anaplastic ependymomas exist. Because all of these tumors tend to spread (grade III) and tend to be faster growing than via the cerebrospinal fluid (CSF), diagnosis the low-grade tumors. These are most commonly includes evaluation of the entire brain and spinal www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 20

20 CHAPTER 3: TYPES Of BRAIN TUMORS Glioblastomas commonly contain a mix of cell cord. An MRI scan with gadolinium enhancement types. It is not unusual for the tumor to contain and examination of the CSF for the presence of cystic material, calcium deposits, blood vessels tumor cells is used for that evaluation. or a mixed grade of cells. The diagnosis of a Germ cell tumors are the only primary brain glioblastoma is based on several features when the tumors that might be diagnosed by tumor markers tissue is examined: the cells are highly malignant, found in the cerebrospinal fluid and blood. The there are abnormal and numerous blood vessels markers are alpha-fetoprotein (AFP), placental and a high percent of tumor cells are reproducing alkaline phosphatase (PAP) and human chorionic 3 at any given time. Necrotic (dead) cells may also gonadotropin (HCG). More commonly, however, be seen, especially toward the center of the tumor. the markers are used to monitor the effectiveness of The growing blood vessels may be seen throughout therapy and to detect recurrence. the tumor, but are generally present in highest number near the edges of the tumor. These blood Because of their location, most germ cell tumors vessels bring nutrients to the tumor, assisting in its are treated with chemotherapy or a combination of growth. Since these tumor cells arise from normal radiation and chemotherapy, rather than surgery. brain, they easily intermingle with and invade A biopsy to establish an exact diagnosis is not normal brain tissue. However, glioblastoma rarely uncommon, though, and some very experienced spreads elsewhere in the body. surgeons have had success removing certain pineal region tumors. Surgery may be required to In recent years, advanced biotechnology has treat hydrocephalus caused by a blockage of the allowed glioblastomas to be sub-divided into two cerebrospinal fluid pathways, caused by the tumor. groups: primary and secondary glioblastoma. Primary or de novo, glioblastoma arise quickly GlIOBlASTOMA and tend to make their presence known abruptly. Also called “astrocytoma, grade IV” and “GBM” These are the most common, very aggressive “Grade IV astrocytoma,” “glioblastoma” and form of glioblastoma. Secondary glioblastoma “GBM” are all names for the same tumor. This may have a longer, somewhat slower growth tumor represents about 16% of all primary brain history but are still very aggressive tumors. These tumors and about 60–75% of all astrocytomas. glioblastoma may begin as lower grade tumor and They increase in frequency with age and affect then transform into higher grade. They tend to be more men than women. Only three percent of found in people ages 45 and younger and represent childhood brain tumors are glioblastomas. about 10% of the glioblastomas. Scientists are Glioblastomas are generally found in the cerebral now developing tests that may help better identify hemispheres of the brain, but can be found these two sub-categories of glioblastoma. That anywhere in the brain or spinal cord. Because information may also soon lead to other sub- glioblastomas can grow rapidly, the most common groupings of glioblastoma and therapies specific symptoms are usually due to increased pressure to those biological differences between tumors. in the brain and can include headache, nausea, However, it does not appear that there are any vomiting and drowsiness. Depending on the differences in prognosis for either of these types of location of the tumor, patients can develop a glioblastoma. variety of other symptoms such as weakness or Lack of exactly the same cells from end to end of sensory impairment on one side of the body, the tumor makes a glioblastoma one of the most seizures, memory or language impairment and difficult brain tumors to treat. While one cell type visual changes. may be responsive to treatment, other types may 21 ABOUT BRAIN TUMORS

21 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS be resistant. For this reason, the treatment plan for The most commonly used chemotherapy drug in glioblastoma will combine several approaches. adults is currently temozolomide; however, other drugs are also being tested. Many of the studies The first step in treating a glioblastoma is surgery combine temozolomide with other drugs which to make a diagnosis, relieve pressure and safely have different biological actions, such as those remove as much tumor as possible. Because these affecting blood vessel growth or drugs which tumor cells have octopus-like tentacles, there are interfere with proteins created by the tumor. no clear edges to glioblastomas. This feature makes Some neurosurgeons use biodegradable wafers them very difficult to remove completely. If the which contain the chemotherapy drug BCNU. tumor is located near important structures such The wafers are placed in the cavity created during as the language center or motor area, the ability to tumor removal. Other new delivery systems which remove most of the tumor may be further limited. place drug directly into the tumor area are under investigation as well. Chemotherapy might also be Radiation therapy, accompanied by chemotherapy, used to delay radiation in young children. almost always follows surgery or biopsy. Radiation therapy affects mostly replicating cells and Because glioblastoma cells tend to move into nearby therefore causes more damage to tumor cells than tissue, total removal of these tumors is not possible. to normal brain cells (most cells in the brain are Tumor regrowth can be treated with additional not actively dividing). The most common type surgery, another form of focused radiation, a of radiation is called fractionated external beam different chemotherapy drug or combination of radiation, meaning that the radiation is given drugs or any number of new approaches to these in several treatments over a few weeks. (This is tumors. also called standard radiation or conventional radiation.) It is given to the tumor and a margin An area of active research interest is the development of drugs that target specific biological around it, but not to the whole brain. Another type abnormalities found in the tumor cells. Many of radiation sometimes used for glioblastomas is of these drugs interfere with or block signaling conformal or intensity modulated radiation therapy pathways within the tumor – the message patterns (IMRT). Other types of radiation may be used tumors and their byproducts (such as proteins on an experimental basis but are not considered or enzymes) create. The ability to identify these “standard” therapies (for example brachytherapy, biologic differences and to create drugs that target which consists of either implanted radioactive these differences, are called “personalized” or seeds or catheters with temporary radioactive “individualized” medicine. While this is an exciting sources in the tumor or monoclonal antibodies tagged with radioactive particles). Because of its area of science, development and testing of these drugs are in the earliest stages. very focused beams and the need to radiate some amount of tissue around the central mass of a Immunotherapy – the use of vaccines or glioblastoma, stereotactic radiosurgery is generally immunizations – is another area of research not used for this tumor. The exception may be interest. These therapies use the body’s own in treating a tumor with a very specific, localized immune system to fight a tumor. There are several area of growth or regrowth. In that situation, research studies focusing on this area of treatment radiosurgery may be used as a “boost” to that very and many of these studies are open to those confined area; however this also is a strategy that is with a glioblastoma. Some of these treatments not widely used. use tumor cells, removed at the time of surgery, which are treated in a laboratory then re-injected www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 22

22 CHAPTER 3: TYPES Of BRAIN TUMORS as a “vaccine” back into the patient. The goal of VISUAl CHANGES WITH TUMORS these treatments is to trigger the body’s immune AlONG THE OPTIC PATHWAY system into mounting a response to the tumor. Some vaccines combine the treated tumor cells with a drug or other substance. Immunotoxins, such as diptheria or pseudomonas, link a toxin to a radioactive antibody and carry it to the tumor cells. Monoclonal antibodies combine a radioactive 1 3 substance with a substance that will trigger an immune response. These new therapies are offered 1 2 in organized research studies called clinical trials. 2 4 3 3 Clinical Trials A clinical trial offers new or experimental 4 treatments to qualified brain tumor patients. Clinical trials are tests to determine if a particular treatment is safe and effective for use. Clinical trial participants volunteer to receive a treatment that otherwise would be unavailable to them. abtatrialconnect.org, call 1-877-769-4833 or click Some clinical trials are targeted to certain ® on the TrialConnect link on the ABTA website. patients based on the genomics of their specific tumor. Genomic testing is available for patients GlIOMA commercially and at some of the larger brain tumor This is a general term for any tumor that arises institutions. from the supportive, or gluey, tissue of the brain. This tissue, called glia, helps to keep the neurons The ABTA can assist patients who want to better (“thinking cells”) in place and functioning well. understand the risks and benefits of clinical There are three types of normal glial cells that trials, patient rights and protections in a trial and ® can give rise to tumors. An astrocyte (star-shaped more. In addition, ABTA offers TrialConnect , a cell) will give rise to astrocytomas (including free, confidential service that links brain tumor glioblastomas), an oligodendrocyte (cell with patients with appropriate clinical trials based on short arms forming the insulation of neurons) will the patient’s tumor type and treatment history. give rise to oligodendrogliomas and lastly, tumors For more information on clinical trials, visit www. called ependymomas arise from ependymal cells abta.org , call the ABTA CareLine at 800-886-ABTA (i.e., the cells that form the lining of the fluid . (2282) or send an email to [email protected] ® cavities in the brain). Occasionally, tumors will , visit www. For more information on TrialConnect display a mixture of these different cells and are called mixed gliomas (see “Mixed Gliomas” on page 26). GlIAl CEllS Names such as “optic nerve glioma” and “brain stem glioma” refer to the location of these tumors and not the type of tissue that gave rise to them. A specific diagnosis is only possible if a sample of the tumor is obtained during surgery or biopsy. 23 ABOUT BRAIN TUMORS

23 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS and those for whom most of the tumor has been lOCATION Of THE CEREBEllUM removed, radiation to the tumor area followed by a lower dose of radiation to the entire brain and spinal cord follows surgery. Very young children are often treated with chemotherapy instead of radiation to defer its use until they are older. Chemotherapy generally follows radiation therapy. The most commonly used agents include a Cerebellum combination of cisplatin and vincristine with either fourth Pons cyclophosphamide or CCNU. Other drugs, such Ventricle as etoposide, have also shown activity against the Medulla Oblongata tumor. Spine There is no standard treatment for recurrent tumors. Some patients with a recurrent tumor, who show good response to chemotherapy, may benefit MEDUllOBlASTOMA from high dose chemotherapy with autologous Medulloblastomas represent about 13% of the stem cell transplant. brain tumors in children under the age of 14. In New therapies and new treatment plans are addition, medulloblastomas represent about 3% of developed in organized programs called clinical the brain tumors in adults. Medulloblastomas are trials (see “Clinical Trials” on page 23). always located in the cerebellum. METASTATIC BRAIN TUMORS Medulloblastoma is a fast-growing, high-grade A metastatic or secondary, brain tumor is formed tumor which frequently spreads to other parts by cancer cells from a primary cancer elsewhere of the central nervous system. Given its location in the body which spread to the brain. In most – close to one of the fluid cavities of the brain situations, the primary cancer is diagnosed before called the fourth ventricle – the tumor may also it spreads to the brain, but in some circumstances extend into that cavity and block the cerebrospinal the brain tumors are found the same time or fluid circulation or send tumor cells through before the primary cancer is found. Cancers that the spinal fluid to the spine. It is uncommon for frequently spread to the brain include: medulloblastomas to spread outside the brain and spinal cord. • Lung cancer The most common symptoms of medulloblastoma, Breast cancer • particularly in young children, include behavioral • Melanoma (malignant skin cancer) changes; symptoms of increased intracranial pressure such as headaches, nausea, vomiting and • Kidney cancer drowsiness; gait unbalance and poor coordination of the limbs; and unusual eye movements. • Colon cancer Treatment consists of surgical removal of as much MENINGIOMA tumor as possible, radiation and chemotherapy. These tumors arise from the “arachnoid mater” Testing will also be done to check for possible – one of the layers of the meninges (the lining tumor spread, including an MRI of the spine and of the brain). Meningiomas represent about a cerebrospinal fluid analysis. For older children, 38% of all primary brain tumors and occur most adults without evidence of the tumor spreading frequently in middle-aged women. The majority www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 24

24 CHAPTER 3: TYPES Of BRAIN TUMORS can grow quite large before symptoms become of meningiomas are benign, grade I, slow- noticeable. Symptoms are caused by compression growing tumors which are localized and non- rather than by the tumor growing into brain tissue. infiltrating. Meningiomas are most often located between the cerebral hemispheres (“parasaggital If the tumor is accessible, the standard treatment meningiomas”); within the meninges, the is surgery to remove the tumor, the portion protective tissues that cover the spinal cord of the dura mater (the outermost layer of the and brain (“convexity meningiomas”); at the meninges) to which it is attached and any bone base of the skull; and in the back, lower part of that is involved. Total removal appears critical for 3 the brain called the posterior fossa. They occur long-term tumor control. Evaluation of the blood less frequently in the spine. Most often a single supply of the tumor may be done preoperatively tumor is found, but multiple meningiomas also and in some cases the blood vessels are embolized occur. Risk factors for meningioma include prior (purposefully blocked) to facilitate the removal radiation exposure to the head and a genetic disorder called “neurofibromatosis type 2” (read MENINGES more in Chapter 4, under “Genetic Factors”) The three layers Parasagittal which affects the nervous system and the skin; of meninges Region Dura mater however, meningiomas also occur in people who Subarachnoid Arachnoid Space have no risk factors. Pia mater A variety of symptoms are possible, depending Tentorium on the tumor’s location. The most common indications are headache, weakness on one side, seizures, personality and behavioral changes and Posterior confusion. Neuro-imaging (scanning) with a CT or fossa Cerebello- MRI is used to evaluate the location of the tumor. Pontine Spinal Cord Calcifications may be seen in cases of slow growing Angle meningioma. The benign meningioma (grade I) is slow-growing with distinct borders. Because it grows slowly, it COMMON lOCATIONS Of MENINGIOMAS Sphenoid Ridge Olfactory Groove Parasagittal falcine Suprasellar Convexity foramen Magnum Fourth Edition. Churchill Surgical Pathology of the Nervous System and Its Coverings. Burger, Scheithauer and Vogel. Livingstone, New York, 00. Diagram reproduced with permission. ABOUT BRAIN TUMORS 25

25 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS of the tumor. Radiation therapy or radiosurgery based on the grade of the tumor. It is less clear might be of value if the tumor is not entirely whether the tumor behavior is closer to that of removed. For some patients, surgery may not the most abundant cell type. be recommended. For those with no symptoms Standard treatment for a mixed glioma is similar (when they have been diagnosed coincidentally), to that for an astrocytoma and oligodendroglioma those with minor symptoms of long duration and of the same grade. The treatment plan may include those for whom surgery would be risky, long-term surgery followed by radiation therapy, particularly close observation with scans may be advised. An if the tumor is high-grade (grade III or IV) alternative includes focused radiation, also called although it may also be indicated for lower-grade “stereotactic radiosurgery.” tumors (grade II). Chemotherapy will generally be The atypical meningioma (grade II) has a middle used in high-grade tumors. range of behavior. These tumors are not clearly OlIGODENDROGlIOMA malignant but they may invade the brain, have These tumors arise from oligodendrocytes, one a tendency to recur and are faster-growing. The of the types of cells that make up the supportive diagnosis and grade are determined by specific or glial, tissue of the brain. Under the microscope features that can be seen under the microscope. these tumor cells seem to have “short arms” or Radiation therapy is indicated after surgery, a fried-egg shape as opposed to astrocytomas, particularly if any residual tumor is present. which have “long arms” or a star-like shape. Anaplastic or malignant meningiomas (grade III) Oligodendrogliomas can be low-grade (grade II) and papillary meningiomas are malignant and tend or high-grade (grade III also called anaplastic). to invade adjacent brain tissue. They represent Sometimes oligodendrogliomas may be mixed less than 5% of meningiomas. Radiation therapy with other cell types. These tumors may also be is clearly indicated following surgery regardless of graded using an “A to D” system which is based whether residual tumor is present. on microscopic features such as the appearance of Meningiomas may recur, either as a slow-growing the cell nucleus, the number of blood vessels and tumor or sometimes as a more rapid-growing, presence or absence of dead tissue called necrosis. higher-grade tumor. Recurrent tumors are treated The grade denotes the speed with which the tumor similarly, with surgery followed by either standard cells reproduce and the aggressiveness of the radiation therapy or radiosurgery regardless of tumor. the grade of the meningioma. Chemotherapy and Oligodendrogliomas occur most frequently in biological agents are being studied for recurrent young and middle-aged adults, but can also be meningioma. Drugs that target abnormal signaling found in children. The most common location is pathways within the tumor are also being the cerebral hemisphere, with about half of those evaluated. Hormone therapy does not appear tumors being found in the frontal lobe. Seizure is effective. MIXED GlIOMA Mixed gliomas commonly contain a high OlIGODENDROCYTE proportion of more than one type of cell. Most Oligodendrocytes are one of the types of cells that often these tumors contain both astrocytes and make up the supportive, or glial, tissue of the brain. oligodendrocytes – these tumors are generally called mixed gliomas or oligoastrocytoma. Occasionally, ependymal cells are also found. The behavior of a mixed glioma tumor tends to be www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 26

26 CHAPTER 3: TYPES Of BRAIN TUMORS the most common initial symptom, particularly in surgery may be indicated. Conventional radiation low-grade tumors. therapy can be given if it was not used initially. A form of focused radiation therapy, such as Standard treatment for accessible tumors is surgical radioactive implants or stereotactic radiosurgery, removal of as much tumor as possible. Biopsy alone might be recommended if conventional radiation may be performed for inaccessible tumors – those therapy has already been given. Chemotherapy is that cannot be surgically removed. The tumor frequently used to treat recurrent tumors. Clinical sample removed during a biopsy is used to confirm trials with chemotherapy and biologic therapies the diagnosis and the grade of tumor. 3 are available for recurrent high-grade gliomas. For more information on clinical trials, see For low-grade oligodendroglioma that appear on “Clinical Trials” on page 23. the MRI scan after surgery to have been completely resected, close observation with follow-up MRIs ADDITIONAl TUMOR TYPES may be recommended. If some of the tumor Other brain tumor types include: remains after surgery (this is called “residual” tumor), radiation therapy appears to be indicated Acoustic Neuroma • although the best timing – immediately or at tumor Atypical Teroid Rhabdoid Tumor (ATRT) • progression – is being determined in clinical trials. Recurrent low-grade oligodendrogliomas can be Chondroma, Chondrosarcoma, Chordoma • treated with surgery, radiation therapy (if not given Choroid plexis tumors • initially) or chemotherapy. For anaplastic oligodendroglioma, a combination • Cysts of radiation therapy and chemotherapy such as Dysmbryoplastic neuroepithelial tumor • PCV (procarbazine, CCNU and vincristine) or (DNT) temozolomide is indicated. Recurrent anaplastic oligodendroglioma may be treated with surgery Gangliocytoma • and/or chemotherapy. Genetic analyses of Ganglioglioma • oligodendroglioma have shown that combined loss of the short arm of chromosome 1 and the long Germinoma • arm of chromosome 19 (called “1p 19q loss”) is associated with improved outcome. Clinical trials • Glioma, optic are available for newly diagnosed and recurrent, • Gliomatosis cerebri low-grade or high-grade oligodendrogliomas. Many of these trials take into account the genetic features • Glomus jugulare of the tumor, thereby highlighting the importance of obtaining tumor tissue for analysis (see “Clinical Hemangioblastoma • Trials” on page 23). • Hemangipericytoma RECURRENT TUMORS • Lipoma Many tumors cannot be removed completely during surgery because they have invaded the Neuroblastoma cerebral • surrounding normal tissues. Some tumors such as low-grade gliomas (astrocytomas and • Neurocytoma central oligodendrogliomas) and meningiomas have • Neurofibromatosis the potential to recur as higher-grade or more aggressive tumors. If the tumor recurs, a second • Pinel 27 ABOUT BRAIN TUMORS

27 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Pituitary • • PNET • Pseudotumor cerebri • Schwannoma • Skull base • Spinal cord • Teratoma • Tuberous sclerosis • Vestibular schwannoma More information on brain tumor types, treatments, clinical trials and other brain tumor or by www.abta.org resources can be found at calling 800-886-ABTA (2282). www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 28

28 THE BRAIN TUMOR GUIDE A Primer for Patients and Caregivers For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS Causes and Risk Chapter 4: Factors When patients learn they have an uncommon disease, questions may arise about the causes and risks for that disease. “Why did this happen to me? What do I have in common with other people who have this disease? What does this mean for my family? How close are we to preventing this?” These are all normal questions. An epidemiologist is a scientist trained in studying groups of people with the same disease. Brain tumor epidemiologists look for causes and risk factors that would explain why people develop brain tumors and what these people have in common with each other. These observations of “commonality” can provide important clues as to the links between individuals. Once one of these findings has been replicated by other scientists or additional studies – a process called validation – then this finding would be considered a convincing cause or risk factor for that disease. ABOUT BRAIN TUMORS 29

29 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Of the long list of factors studied, only exposure to INTRODUCTION ionizing radiation has been consistently associated , environmental Causes and risk factors can be with an increased risk for developing a brain tumor. such as being exposed to poisonous substances in (Ionizing radiation uses “high-frequency” energy the home or at work; eating or not eating certain waves such as X-rays or gamma rays. However, foods; or whether or not we exercise, smoke radiation doses used today for medical and dental cigarettes or drink alcohol. They can also be therapies are better focused than those used in , such as being born with a gene mutation genetic medicine decades ago.) or susceptibility that one inherits from parents. These genetic mutations/susceptibilities may also On the other hand, some studies have shown that accumulate over time, as one grows older. a history of allergies as an adult, eating fruits and vegetables as a child and having a mother who ate Unfortunately, no risk factor accounting for the fruits and vegetables during pregnancy and having majority of brain tumors has been identified, even decreased chicken pox as a child puts one at a risk though many environmental and genetic factors of development of brain tumors. have been and are currently being studied. Of particular interest over the last decade has been ACTORS ENVIRONMENTAl f the potential association between cell phone use Many studies have looked at a wide spectrum of and risk of developing a brain tumor. Multiple large environmental factors as possible causes of brain studies have been performed in both the United tumors including but not limited to: States and Europe. Some have shown an association • Being exposed to air pollution, residential between cell phone use and brain tumor risk, while power lines, second hand smoke, other studies show no association. In addition, agricultural chemicals and industrial studies have also investigated the difference in formaldehyde risk of a brain tumor between short-term and Working in synthetic rubber manufacturing • long-term (>10 years) cell phone use with further or petroleum refining/production conflicting results. In general, the conclusions from most of these studies are (1) there is no consistent Smoking cigarettes, smoking cigarettes while • association between cell phone use and risk of pregnant and consuming alcohol developing a brain tumor (benign or malignant) and (2) there is a very slight increased risk of a • Using common medications like birth brain tumor associated with using a cell phone control pills, sleeping pills, headache for 10 years or more. Further studies, in both remedies, over-the-counter pain treatments the laboratory and in humans with longer follow and antihistamines up, are needed to fully understand this exposure Having a history of head trauma, epilepsy, • and any potential relationship with brain tumor seizures or convulsions development. Experiencing viruses and common infections • Additional research is needed before definite conclusions can be formed. • Consuming cured foods (nitrites) ABOUT ClUSTERS Of BRAIN TUMORS These exposures are difficult to accurately measure Understandably, communities become concerned and can lead to inconsistencies across studies, when several individuals within a neighborhood making the results difficult to validate. Additional are diagnosed with brain tumors. Scientists long-term research on these factors is needed studying these groups will want to learn whether before definite conclusions can be formed. these are metastatic brain tumors (those that www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 30

30 CHAPTER 4: CAUSES AND RISK fACTORS began as cancer elsewhere then moved to the brain) or primary brain tumors (those that began in the brain and tend to stay there). If the brain tumors are primary tumors, scientists will want to know the specific type(s) of primary brain tumors. The clusters of most concern are those involving the same type of primary brain tumor, since these tumors may share similar biologic origins. Metastatic brain tumors, such as breast cancer, lung cancer or colon cancer that has spread to the brain, most likely do not share the same origins as primary brain tumors. 4 • “Genetic” means anything referring to our genes. The first step in reporting a perceived cluster • “Inherited” or “hereditary” means a of brain tumors is to call your local health disease or condition passed from one department. They can tell you if the incidence generation to another within a family. of brain tumors is higher than expected for the area or if any current investigations are underway. Once reported to the local health department, The vast majority of genetic risk factors, however, the next level of authority may be the county or are not inherited at birth but actually accumulate the state department of health. Each state hires over time as we age (also called somatic or epidemiologists to monitor the incidence of disease acquired). While most of our genes go about their in their state. They also have the authority to order jobs as expected, a small number may become an investigation, if warranted. inactive or begin functioning abnormally. The end result of having an abnormal gene can be as simple ACTORS GENETIC f as two different colored eyes or as complex as the Genes are the operating instructions for the entire onset of a disease. There are many different types of body. Anything that refers to our genes can be genes that are thought to not be working correctly called “genetic.” in brain tumors: Genetic factors refer to conditions or diseases • Tumor suppressor genes make proteins that inherited within families. Only 5–10% of all stop tumor growth in normal cells. The most cancer is actually inherited from one generation to well-defined tumor suppressor gene is TP53, another in a family (also called hereditary). There which is believed to play a role in causing a are a few rare, inherited genetic syndromes that low-grade malignant brain tumor to develop involve brain tumors. Hence, there are very few into a high-grade malignant brain tumor. families where multiple people in that family have • make proteins that cause cells to Oncogenes a brain tumor. In those syndromes, a mutation grow in an out-of-control manner. in a specific gene is passed from grandparent, to parent, to child. These syndromes, along with • play a role in making sure Growth factors the inherited gene are: Neurofibromatosis 1 (NF1 that cells grow normally. EGFR is a growth gene), Neurofibromatosis 2 (NF2 gene), Turcots factor that has been well studied in brain (APC gene), Gorlins (PTCH gene), Tuberous tumors and has been shown to be in very Sclerosis (TSC1 and TSC2 genes) and Li-Fraumeni high quantities in high-grade malignant syndrome (TP53 gene). brain tumors, causing these tumors to grow abnormally fast. ABOUT BRAIN TUMORS 31

31 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Cyclin-dependent kinase inhibitors play a role • interact with one another, they may also interact in making sure that the cell goes through its with environmental factors as well. The Cancer growth cycle normally. Genome Atlas (TCGA) Project, funded by the National Cancer Institute (NCI) and National make proteins that control DNA repair genes • Human Genome Research Institute (NHGRI), has accurate repair of damaged DNA. a goal of completely cataloging all of the somatic genetic changes in more than 20 different cancers, make proteins • Carcinogen metabolizing genes then making these data publically available in that break down toxic chemicals in the body order to improve the ability to diagnose, treat and that could cause damage to one’s DNA, like prevent cancer. TCGA started as a pilot project the chemicals in cigarette smoke and/or in 2006 prioritizing glioblastoma (GBM), ovarian alcohol. and lung cancers as the first cancers to study. make proteins that Immune response genes • The first GBM paper published under this project control how one’s immune system responds showed three biological pathways involved with to viruses and infections. GBM. Since that publication, other scientists have described additional key genetic changes With the publication of the Human Genome and associated with malignant brain tumors. Some of advances in genotyping technology, scientists can these reports include important comparisons with now identify over a million genetic variants found low grade gliomas and other glioma subtypes. in the human body and ask the question: “Are any TCGA is now expanding its efforts to include of these inherited genetic variants associated with other types and grades of gliomas. risk of a brain tumor?” This type of study is called a genome-wide association (GWA) study. Two Chromosome Changes recent GWA studies of glioma found some results Another area of scientific study is the ability in common, but they also found some differing . chromosomes tumors have to lose or gain pieces of results. The scientists involved in these studies Each normal cell in any human body has 23 believe the differences in their results may be due pairs of chromosomes. The most common to the differences in the people who were part of chromosomal changes in brain tumors occur on their studies. This research shows that common chromosomes 1, 10, 13, 17, 19 and 22. genetic differences amongst the population can Changes on chromosomes 1 and 19 are most contribute to risk for developing a malignant brain frequently found in oligodendrogliomas. Changes tumor. Much more investigation is needed to fully on chromosome 22 are most frequently found in understand the importance of these variations and meningiomas. Scientists are studying how this how they may impact brain tumor risk. This type information can best be used for diagnostic or of GWA study has yet to be performed for benign treatment purposes. brain tumors or pediatric brain tumors. “Acquired” or “somatic” means genetic changes that have accumulated over time. The Cancer Genome Atlas (TCGA) Project Studies of any specific gene are complicated by the fact that there are many potential genes in the human genome to consider. While these genes www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 32

32 CHAPTER 4: CAUSES AND RISK fACTORS Questions about Heredity Concerns about heredity and brain tumors are common. If you have questions about your family history, we suggest the following: • Begin by sharing your family’s medical history with your primary physician. He or she will want to know the type of brain tumor and your relations to the person with the tumor. Although routine screening for brain tumors is not available as it is for breast or cervical cancer, unusual symptoms – such as headaches or short term memory loss – can be investigated with your family history in mind. diagnosed with brain tumors or have concerns about • If you have multiple family members starting a family, consider a consultation with a genetic counselor. He or she can access the latest genetic information related to the specific tumor type in your family and advise you accordingly. The ABTA’s resources are available to help you locate a genetic counselor. • Share your family’s medical history with your kids and help them become good medical historians. Your children can learn their family history of brain tumors at the same time they learn about other diseases that run in the family, like high blood pressure or diabetes. ABOUT BRAIN TUMORS 33

33 THE BRAIN TUMOR GUIDE For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Symptoms and Chapter 5: Side Effects The symptoms of a brain tumor are different in each person. While it is not possible to know exactly what symptoms to expect, understanding what might occur – and why – may help you better prepare for these possibilities. Symptoms like memory problems, seizures, or changes in personality or in speech may be indications of a brain tumor. In some cases, tumors are discovered by accident, such as when a scan is performed for a non-brain tumor purpose, such as a head injury. It is possible that the tumor may not cause any symptoms that interfere with the normal workings of the body or the symptoms were so minimal that you were not aware of the tumor until a scan was done. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 34 www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 34

34 CHAPTER 5: SYMPTOMS AND SIDE EffECTS Sounds or the source of the sound, may not be TUMOR EffECTS recognized. Music and voices may be hallucinated With a limited amount of space in the skull, the or sounds may be heard louder or softer than they growth of anything that doesn’t belong there can actually are. Behavior changes may occur. There change the way the brain works. These changes also may be difficulty in remembering recent may be temporary or permanent. events. Tumors can cause direct damage to brain tissue, a Occipital Tumors disturb vision and the ability to shifting of the brain as the tumor grows or pressure recognize what is seen. The occipital lobe contains on the brain. As a tumor grows, the symptoms complicated visual connections, thus a tumor in this often correspond to the affected parts of the brain. area can cause various forms of visual loss. Double Therefore, it’s important to ask the doctor where vision, loss of half of the vision in one or both eyes the tumor is located. or blindness in only one direction may occur. Visual The most common tumor locations and the related hallucinations may cause a temporary “dreamy” effects, are as follows: state. Facial expressions may not seem familiar. 5 cause a lack of interest in an Frontal Tumors can reduce visual accuracy. Optic Nerve Tumors individual’s surroundings, as well as mood The location of the tumor along the nerve swings and changes in ethical standards. Problem determines what part of the visual field is lost. solving may become difficult because of a lack of A tumor of the optic chiasm (where the optic concentration. Behavior and personality changes nerves cross) can cause vision loss in both eyes. also may occur and short-term memory (memory Headaches and nausea may be caused by pressure of recent events) may diminish. When the memory on the surrounding brain tissue. cannot “remember” words, it may be difficult to (such as Cerebellar-Pontine Angle Tumors express thoughts in words or writing. The frontal acoustic neuromas) cause pressure on the seventh lobe also plans and begins the sequences of and eighth cranial nerves. Ringing in the ears or movement. a one-sided hearing loss (often first noticed when can cause a decreased awareness Parietal Tumors using the telephone) may occur. Dizziness and one- of sensation against the body. Difficulty recognizing sided facial weakness are common. body position or body parts may be noticed. If the often cause vomiting and Brain Stem Tumors tumor is in the dominant (usually left) hemisphere, a clumsy gait. The tumor can affect tongue confusion of the left and right sides of the body movements, making swallowing and speaking may occur. The parietal lobe also controls language difficult. One-sided hearing loss may occur. and arithmetic ability. Numbers can be read, but Unusual eye movements can cause dizziness or the loss of recognition of left-right or up-down unsteadiness in walking. The brain stem also positioning can make it difficult to add, multiply controls vital life functions such as breathing and or comprehend material presented in side-by- heartbeat. columns. Similarly, sentences that contain side a comparison or a cross-reference may not be can disturb Hypothalamic and Pituitary Tumors understood. appetite and the desire for food. The pituitary gland also controls the normal production of hormones are frequently “silent” unless Temporal Tumors in the body. A tumor in this area may change the they reach a significant size. They can cause a amount of hormones made by the pituitary gland. dreamy “deja vu” state. Sense of time may be Hormone disturbances can cause water balance disturbed. The temporal lobe also controls the problems, abnormal growth, sleep disturbances and ability to hear and understand what is heard. ABOUT BRAIN TUMORS 35

35 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS caring member of your health care team, a social emotional changes. Sexual development may be delayed or advanced or sexual desire may change. worker or a clinical psychologist. Support groups and relaxation exercises may also be useful. For may cause sensory changes on Thalamic Tumors information on coping strategies and tips on one side of the body. Tremors during purposeful managing stress, see Chapter 9, “Coping,” on movement may be noticed. page 63. (such as choroid plexus, Posterior Fossa Tumors PHYSICAl EffECTS fourth ventricle and cerebellar tumors) may cause Treating a brain tumor takes a physical toll on tremors or a clumsy, uncoordinated pattern when one’s body. As you go through your treatment, walking. Nerve irritation may cause pain in the know the potential side effects, such as hair loss base of the head. or changes in your body. While the effects are different for every person, a brain tumor and EMOTIONAl EffECTS subsequent treatment can change a person’s When a brain tumor is diagnosed, it can take appearance, as well as their ability to carry on a away your sense of security and control. This can full, active day. be both unsettling and frightening. Uncertainty is among the most challenging things that you Many hospitals offer make-up and hair sessions for will have to grapple with on a day-to-day basis. those who have received cancer treatment. These The feeling that your body has betrayed you often seminars provide personal appearance tips and can leads to a rollercoaster of potent emotions. help boost self-confidence. Additionally, a listing of wig and head covering resources is available Patients with a brain tumor often develop through the ABTA. Oftentimes, when you think symptoms due to the stress of diagnosis and you look your best, you feel better about yourself. treatment. Decreased appetite, depression, irritability, fatigue, sleeplessness, temporary People with a brain tumor often have questions memory problems and restlessness are common. about sex: “Can I still have sex? How soon after Nausea (a sick-to-your-stomach feeling), bladder surgery can I have sex? Will my treatments affect problems or constipation also may occur. Your my desire for sex?” Talk to a member of your doctor usually can help you deal with these health care team – they can answer your questions problems. and provide suggestions. Your desire for sex may decrease temporarily because you may feel fatigued, There is no “right” way for you to behave or feel unattractive or you may fear hurting yourself. Or, when you have been given a brain tumor diagnosis. your partner may be overly cautious and afraid of Dealing with changes to your appearance – such as hurting you. For the time being, consider replacing shedding your hair or losing weight – and losing sexual activity with non-sexual physical closeness your one-time sense of invulnerability is difficult such as holding hands, cuddling, kissing or for the best of us. hugging. Find activities you can comfortably share It’s important to recognize the emotional effects and special times to be alone. of cancer and find ways to cope. It may help to Be realistic during your treatment – keeping know that it is completely normal to feel a range up with your usual responsibilities may be too of emotions when your life suddenly changes. difficult. Medications, treatment and travel to and Some people find that just having a loved one to from treatment, can all cause fatigue. Set priorities. talk to when days are difficult is enough. Others Do only what has to be done and if you still have need some extra professional help, perhaps a www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 36

36 CHAPTER 5: SYMPTOMS AND SIDE EffECTS the energy or inclination, then consider other chores or errands. Call upon friends and neighbors to help. Plan frequent rest periods during the day. Save your energy for special events or unavoidable chores. It’s also important for both patient and caregiver to continue treatment for any other medical conditions during this time and keep up with dental visits and eye care examinations. More information on brain tumor types, treatments, clinical trials and other brain tumor resources can or by calling 800-886- be found at www.abta.org ABTA (2282). 5 ABOUT BRAIN TUMORS 37

37 THE BRAIN TUMOR GUIDE For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Diagnosis Chapter 6: Sometimes a brain tumor is found by accident – it may be seen on a scan performed for a non-brain tumor purpose – but most commonly, a tumor makes its presence known by interfering with the normal workings of the body. Follow-up care for a brain tumor extends over a lifetime, not unlike many other medical conditions. At some point, depending on the type of tumor, your brain tumor may become a “chronic illness” just as heart disease or diabetes are “chronic” conditions. Understanding your tests – what they are, how they work and what they can or cannot show – can help you feel more comfortable and in control. If at any time you have questions about the tests ordered for you, feel free to ask. Your nurses and the professionals giving these tests can provide answers, fact sheets, helpful instructions and the reassurance you need to feel comfortable. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 38 www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 38

38 CHAPTER 6: DIAGNOSIS Memory tests, such as repeating a list of • MAKING A DIAGNOSIS objects, describing the food you ate at Your doctor begins the diagnosis by taking your yesterday’s breakfast, what occurred last medical history and asking you to describe month your symptoms, including how long you have had them, when they occur, the order of their If the results of your neurological examination appearance, if they seem to be brought on by lead the doctor to suspect you have a brain tumor, something in particular and if they seem to be a scan will be ordered or you might be referred getting worse. Then your doctor will perform a to a neurological specialist for additional testing basic neurological examination in the office. including scans, X-rays or laboratory tests. NEUROlOGICAl EXAM IMAGING A basic neurological examination includes Imaging takes the place of conventional X-rays, the following tests: which do not show tumors located behind • Eye movement by following a moving finger; the hard bones of the skull or spine. The most pupil reaction and eye reflex using a pen commonly used imaging methods for diagnosis light and follow-up are Computerized Tomography (CT) and Magnetic Resonance Imaging (MRI). Vision, including an examination of the • optic nerve 6 Both CTs and MRIs use computer graphics to create an image of the brain. During a scan, an injection • Hearing using a ticking watch or tuning fork of a special contrast material (dye) is given to make abnormal tissue more obvious. Contrast materials Reflex using a rubber hammer • are able to highlight abnormalities such as tumors Balance and coordination – heel-to-toe • because the dye concentrates in diseased tissues walking, heel-to-shin movements; balance due to the leakiness of blood vessels in and around with feet together and eyes closed; rapid brain tumors. alternating movements such as touching the CT Scan finger to the nose with eyes closed This scan combines an X-ray device with a Sense of touch using a sharp object and a • computer. For some types of tumors, CT images cotton ball or paint brush are obtained both with and without contrast enhancement to provide important additional • Sense of smell with various odors information. • Facial muscle including smiling and If contrast is used, it is usually injected after a few grimacing pictures are taken. The patient lies on a table that slides into a doughnut-shaped opening. The CT Tongue movement and gag reflex • scanner circles the head so the X-rays penetrate Head movement • the brain from many directions. Absorption of the X-rays varies with the type of tissue being Mental status, such as stating the current • scanned. Thousands of thin cross-section readings time and date, naming the current president are fed into the computer, which transforms the information into a picture. The CT scan is probably Abstract thinking, such as defining the • the most routinely used imaging technique for meaning of a stitch in time saves nine diagnosis and follow-up of many tissue 39 ABOUT BRAIN TUMORS

39 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers abnormalities. Recent studies on the radiation signals, the computer can distinguish between exposure caused during CT scans are helping healthy and diseased tissue. doctors to redefine when a CT scan versus another Patients with some cardiac monitors, pacemakers type of scan is most appropriate. or some types of surgical clips cannot undergo MRI MRI Scan scanning because of the magnetic fields. For those The MRI is a tunnel-shaped piece of equipment. who are claustrophobic, sedation or open MRI Some pictures are taken before the contrast scanners may be an option. injection. If contrast is used, it will be injected There are several different types of MRIs now prior to the completion of the scan. The patient available. Some of these are commonly used (such lies on a table that slides into the tunnel. Inside as fast MRI) while others are still being developed the scanner, a magnetic field surrounds the head (such as diffusion tensor imaging). and a radio frequency pulse is introduced to the area. No X-rays are used. The magnetic field An MRI offers images with excellent anatomical causes atoms in the brain to change direction. detail that provides clarity of the small structures The radio frequency pulse causes another change in the brain, but the images often lack quantitative of direction. When the pulse stops, the atoms or finely measurable, information. Because of this relax and return to their original position. During lack of very fine measurable detail, it can take a relaxation, the atoms give off energy in differing while before the effectiveness of drug therapies can amounts and at different intervals of time. be imaged. Researchers are working toward new Antennas pick up these signals and feed them into scanning techniques that will more rapidly image a computer, which assembles a picture. Because treatment effects. different atoms have their own characteristic radio MRI SCAN MRI scan of a This MRI scan TUMOR glioblastoma shows an ependy - TUMOR moma. multiforme. Scan courtesy of Scan courtesy of Dr. Regina Jakacki Dr. Jeffrey Bruce MRI scan of mul MRI scan of a - TUMOR TUMOR single breast - tiple brain mestas tases. metastasis in the cerebellum. Scan courtesy of Scan courtesy of Dr. Raymand Sawaya Dr. Deborah Heros AMERICAN BRAIN TUMOR ASSOCIATION www.abta.org 40

40 CHAPTER 6: DIAGNOSIS Flow Sensitive MRI (FS MRI) Other CT or MRI Based Scans Computer technology advances have made This type of scan combines functional MRI with possible the development of new methods for images of cerebrospinal fluid (CSF) flow. FS MRI using existing scanning equipment. These new can be used to show the flow of CSF through methods provide advanced tools for diagnosis. the ventricles and spinal cord. It can be useful in planning for the surgical removal of a skull base Cerebral Blood Volume (CBV) and Cerebral Blood tumor, spinal cord tumor or a tumor causing Flow (CBF) hydrocephalus. Some new scans measure the rate of blood flow Angiography and MRI Angiography (MRA). into and through the brain. A contrast dye is given to the patient by intravenous (IV) infusion. Angiography is used to outline the presence and position of blood vessels in the brain. After The scanner begins taking pictures as soon as injection of a contrast material into a deep artery, the dye is given. Using computerized timing, a succession of rapid pictures can be imaged, X-rays follow its flow through the blood vessels of tracing the path of blood flow into the brain and the brain. MRI angiography, which is less invasive, uses a rapid succession of MRI scans to follow the to the brain tumor. These scans are currently used blood flow and can be done with or without the to help visualize the tumor’s blood supply. New research indicates they may also be helpful as injection of contrast dye. tools to monitor the effectiveness of treatments 6 The role of angiography for brain tumors is usually (such as drugs) that affect tumor blood supply. limited to planning the surgical removal of a These techniques are also used to scan spinal cord tumor suspected of having a large blood supply or tumors. tumors growing into an area of the brain with an abundance of blood vessels. At times, angiography These new methods are collectively called can be used as a means of embolizing or closing hemodynamic imaging. The information gathered off large blood vessels that feed the tumor, making can be converted into images or graphed into charts. Several different types of scanning surgery easier. equipment are used to produce these images: MRS (Magnetic Resonance Spectroscopy) CT, MRI, PET and SPECT. Magnetic Resonance Spectroscopy produces Dynamic CT and Dynamic MRI images depicting function rather than shape. The The CT or MRI is combined with the ability to equipment requires a special, highly complex measure the uptake of the contrast dye from the facility. time it begins to flow from the IV. Dynamic scans Capable of measuring some byproducts of living are especially useful in showing the growth of tissue (called metabolites), this non–invasive new blood vessels around a tumor. scanning technique can depict patterns of activity fMRI (also called Fast MRI, Echoplanar, Real Time that may be useful in diagnosing specific tumors. or functional MRI) MRS may be useful with low grade gliomas, tumors This technique produces MRI images in a faster with a large amount of surrounding edema and sequence than traditional MRIs. The increased in differentiating between tumor recurrence and speed permits the tumor’s use of oxygen to be radiation necrosis. This technique may also be depicted. Functional MRI may be useful prior to valuable in suggesting the degree of malignancy. or during surgery to show the specific areas of the MRS and PET are complementary tools for brain that control speech, movement and memory metabolic imaging. so they can be avoided. ABOUT BRAIN TUMORS 41

41 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers PET (Positron Emission Tomography) As new radioactive substances become available, Positron Emission Tomography scans are an increasing number of facilities now offer or can not yet routinely used for diagnosis but they arrange PET scanning. Truck-mounted mobile can complement CT or MRI information by PET and combination PET/CT scanners are also suggesting tumor grade. They are also used to bringing this technology into the community. distinguish between tumor regrowth, cells killed SPECT (Single Photon Emission Computerized by radiation (necrosis) and scar tissue. Unlike Tomography) CT or MRI scans, PET scans are quantitative Single Photon Emission Computerized (measurable). However, PET scans do not provide Tomography is not routinely used in the initial detailed images of the brain anatomy. To add diagnosis of a brain tumor, but might complement anatomic detail, the latest PET scanners are being information obtained from other scans. combined with CT or MRI scanners. In these hybrid scanners, PET and CT scans are acquired A SPECT scan is similar to PET. Radioactive concurrently and the resulting PET image is tagged materials taken up by the brain are used. A fused with the CT image. The use of PET in brain special camera measures the rate of emission of the tumor studies is increasing as scientists develop material as it moves through the brain. Images are new imaging drugs, smaller and more mobile PET generated from that information. After MRI or CT, facilities and as PET scanning is combined with this test might be helpful in distinguishing between other types of scans. low-grade and high-grade tumors or between recurrent tumor and necrosis. In a PET scan, a low-dose of a radioactive substance is injected into the patient. The PET scanner has MEG (Magnetoencephalography) a circular detector into which the patient’s head A MEG scan measures the magnetic fields created or body is moved to detect the amount of the by nerve cells as they produce the small electrical radioactive substance taken up by various parts of currents used for neurotransmission. No physical the brain. The most commonly used radioactive contact is required to record the signals. The substance for tumor imaging is a radioactive sugar images created help scientists identify the way the (FDG). The FDG has been most commonly used parts of the brain interact with each other, how because a growing tumor consumes sugar at a high the brain processes information and the pathways rate; radiation necrosis or scar tissue consumes followed by information as it enters the brain. This almost no sugar. However, the normal brain itself may also help us understand why certain brain consumes a lot of sugar (as we think, our brain uses tumors, based on their location, cause specific sugar as fuel) causing considerable background color functional problems. in the PET images. Other radioactive substances The device looks like an old-fashioned hair dryer. now in the early phases of clinical development may When the patient moves, a computer-generated provide a clearer picture of the tumor as well as the image shows which brain area is responsible for ability to capture additional details about the tumor directing the motion. or the activity of the tumor cells. The MEG images are used in combination In PET, measurements of brain or brain tumor with information from other types of scans to activity (determined by concentrations of the determine the function of specific areas of the radioactive substance) are fed into a computer, brain. MEG scanning is available at a very limited which produces a color-coded moving picture of number of facilities. As government support for the brain as it accumulates the radioactive sugar or the development of this technique increases, drug. The use of PET had been somewhat limited community access may also increase. because the equipment is expensive and requires radioactive materials (drugs) synthesized on-site. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 42

42 CHAPTER 6: DIAGNOSIS personalized medicine. This new and fascinating The science of imaging brain tumors is a area of study is in its infancy across all fields of rapidly changing field. Increasing image medicine. resolution, new contrast dyes, the ability to attach scannable tracers to drugs and lumbar Puncture (Spinal Tap) methods of rapidly determining treat- Lumbar puncture is used to obtain a sample ment effectiveness all hold promise for of cerebrospinal fluid (CSF). This procedure the future of brain tumor therapy. is usually avoided if there is any indication of increased intracranial pressure because of the risk of the brain’s bulging through an opening in a X-RAYS membrane, muscle or bone (herniation). Plain skull X-rays are usually not necessary for diagnosis except to help determine if calcification The sample of CSF is examined in a laboratory or bony erosion is present. Slow growing tumors to determine if tumor cells, infection, protein or can cause calcification; increased intracranial blood is present. This information is particularly pressure might cause erosion. An X-ray image helpful in diagnosing primary CNS lymphoma, a might be used to determine the condition of pineal region or meningeal tumor. After surgery, the skull adjacent to meningeal and skull base the presence of tumor cells in the CSF indicates tumors. tumor spread. That information is used for tumor 6 staging and helps the doctor determine appropriate A radiologist interprets the computer images treatment choices. produced by scans and X-rays. The pictures help establish a tentative diagnosis and might suggest The CSF may also be examined for the presence the type of tumor, but they are not definitive. Only of known tumor markers, in addition to tumor examination of a sample of tumor tissue under a cells and substances that indicate the presence of microscope provides an exact diagnosis. a tumor. Scientists are working toward identifying and characterizing the biomarkers for brain lABORATORY TESTS tumors. Biomarkers for germ cell tumors are well- Biomarker Research known. They include: Recent advances in scientific ability to detect • AFP (alpha-fetoprotein) proteins or DNA shed by brain tumor cells in bodily fluids has given rise to an area of science HCG (human chorionic gonadotropin) • called biomarker research. These miniscule bits • PLAP (placental alkaline phosphatase) of material are being explored for their potential use in diagnosis, treatment and monitoring the CEA (carcinoembryonic antigen) is a marker effectiveness of treatments. To date, biomarkers for a tumor of the arachnoid and/or pia mater have been identified in blood, plasma, membranes of the meninges (a leptomeningeal cerebrospinal fluid, urine and saliva. While the tumor). These are usually metastatic tumors. science of these findings is advancing rapidly, their practical, everyday use in a clinical setting Researchers continue to explore and validate is still very unclear and requires large clinical biomarkers for other tumor types. trials. Biomarker tests that predict the likelihood Myelogram of survival over a period of time and tests that Lumbar puncture is used to inject a special dye indicate aggressiveness of the tumor cells, are before a myelogram. The patient is then tilted to now making their way into hospitals. Biomarker allow the dye to mix with the spinal fluid. This research is forming the basis for individual and test is used primarily to diagnose a spinal tumor 43 ABOUT BRAIN TUMORS

43 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers burr hole and tumor tissue is removed from the and obtain pre-operative information for spinal core of the needle. tumor surgery. Stereotaxic biopsy is a computer directed needle Spinal MRI has replaced myelography for many biopsy. The computer, using information from conditions. a CT or MRI scan, provides precise information Evoked-Potentials about a tumor’s location and its position relative to Evoked-potential testing uses small electrodes the many structures in the brain. Stereotactically- to measure the electrical activity of a nerve. This guided equipment might be moved into the burr test is particularly useful in detecting a vestibular hole to remove a sample of the tumor. This is called schwannoma (acoustic neuroma). a closed biopsy. Evoked-potentials can also be used to monitor When a biopsy is not performed, diagnosis relies neurological function during the surgical removal solely on the interpretation of other test results. of a tumor. TUMOR STAGING Audiometry Staging determines if a tumor has spread beyond This hearing test is useful in the diagnosis of the site of its origin. In cancers such as breast, a cerebellopontine angle tumor such as the colon or prostate this is primarily accomplished vestibular schwannoma (acoustic neuroma). by a pathologist’s examination of nearby tissue such as lymph nodes. In those cancers, staging is Endocrine Evaluation a basic part of the diagnostic work-up. Measurements of hormone levels in samples of blood and urine are used, along with scans, to Staging for central nervous system (CNS) tumors diagnose a pituitary or hypothalamic tumor. is usually inferred from CT scan or MRI images or by examining the cerebrospinal fluid. Scans Permietry taken after surgery are used to determine if This technique measures the size of visual fields. there is remaining tumor. CNS tumors that are The information obtained might be useful in diagnosing a tumor in the area of the optic NORMAl chiasm, such as a pituitary tumor. BlOOD lEVEl IN ADUl HORMONE TS RESPONSIBlE fOR... BIOPSY Production of ACTH 9 to 5 pg/ml A biopsy is a surgical procedure in which a adrenocorticotropic cortisol – a natural steroid needed hormone small amount of tumor tissue is removed. The to control blood pressure, sugar and neurosurgeon submits the tumor tissue to a salt levels pathologist for study and analysis. Only then is 0 to 3 ng/ml Controls bone GH a tissue diagnosis possible. growth hormone growth; height; body proportion in the extremities A biopsy can be performed as part of the surgery and jaw to remove the tumor or as a separate diagnostic Controls milk PRl Males and procedure. production in prolactin non- pregnant women, impacts women: sex drive and sperm 0 to 0 ng/ml For areas considered inoperable, the surgeon is counts in men In pregnancy: 10 to 300 ng/ml often able to perform a needle biopsy through a small hole drilled into the skull called a burr hole. 0. to 4.7 mcU/ml Controls thyroid TSH thyroid stimulating functions such as A narrow, hollow needle is inserted through the hormone metabolism, heart rate and appetite www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 44

44 CHAPTER 6: DIAGNOSIS • As scientists learn more about the biology especially prone to spread are studied with both scan images and laboratory tests. For example, of brain tumors, they are becoming aware of new differences and new similarities in patients with medulloblastoma will often have their cerebrospinal fluid examined for the presence of tumors. Sometimes this means re-naming or re-grouping tumors. tumor cells. Those patients will also have scans of their spinal cord because of that tumor’s tendency All grading systems have inherent difficulties and to spread to that location. are not precise. Staging information often influences treatment Criteria used to assign grades can be subject • recommendations and prognosis. to interpretation by each pathologist. GENOMICS Tumors are not uniform and the sample • Doctors are now using genomic changes in examined might not be representative of the the tumor to identify sensitivity to treatment entire tumor. and prognosis. This information is being more ABOUT lESIONS commonly collected from tumor samples at “Lesion” is a general term which refers to biopsy or tumor removal. Some clinical trials are any change (abnormality) in tissue. Tumor, targeted to certain patients based on the genomics inflammation, blood, infection, scar tissue or of their specific tumor. Genomic testing is 6 necrosis (dead cells) are all examples of lesions available for patients commercially and at some of that may be found in the brain. Determining the the larger brain tumor institutions. nature of the lesion is the work of the pathologist. CHANGE Of DIAGNOSIS If your doctor tells you a “lesion” was seen on your Although it may initially seem alarming, your scan, the next step is to ask your doctor what type diagnosis and the name of your tumor might of lesion she or he believes this to be. Treatment change. There are several factors that might cause will be determined based on the type of lesion. the change in diagnosis: ABOUT fOllOW-UP TESTING • Be aware that classification of brain tumors At intervals during and after treatment, your by the pathologist is a subjective procedure doctor will probably order some of the same tests that is not always straightforward. Different you took when your tumor was first diagnosed. pathologists might disagree about the These tests will be used to see if the tumor has classification and grade, of the same tumor. disappeared, is shrinking, remains the same or has • Tumors do not always remain static. They changed. can undergo transformation, usually to a For many patients, a first follow-up MRI scan higher grade. If that occurs, the name and will be done 1–3 months after surgery and/or the grade of the tumor might change. A grade completion of radiation therapy. This time gives III anaplastic/malignant astrocytoma could the brain a chance to begin healing from the effects become a glioblastoma (also called a grade of surgery or radiation. Although it can be difficult IV astrocytoma). to wait, scans done during this time would most Inspecting only a small sample of the tumor, • likely show the swelling that can occur in this time such as that obtained by a needle biopsy, period and would not be truly representative of the might not be representative of the whole status of the tumor itself. tumor. 45 ABOUT BRAIN TUMORS

45 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS Following that initial post-treatment scan, your importance. This list will help ensure that your doctor will determine how often you should have concerns are addressed by helping you stay follow-up scans. Depending on the type of tumor, organized and focused. your doctor may suggest MRIs every 3 months, 6 It can also be helpful to have a friend or family months or perhaps yearly. The follow-up should member accompany you to your appointment. continue even 10 or more years after treatment. Not only can they offer comfort and moral Very late recurrences can happen. A doctor support, they can help make sure that your who knows your history can determine if new questions are being asked and answered by symptoms are related to the tumor or to another checking off questions from the list and writing medical condition. down responses. Scans help to measure the effectiveness of the If it’s OK with your doctor, bring a recording device treatment and monitor for possible recurrence. with you. Then, you can listen to the doctor again Other tests help evaluate the effectiveness of in the comfort of your own home. medications, such as antiepileptic (anti-seizure) drugs. During your doctors’ visits, ask for written information about your brain tumor, your Your doctor will tell you when your next scans symptoms, suggested treatments and your or tests should be done. If you don’t have this medications. information, call your doctor’s office and ask. Your follow-up is as important as your treatment. Some insurance companies require pre-certification of scans. Check your policy for guidelines. If you PROGNOSIS call for pre-certification, record the date, the name Prognosis means prediction. It is an educated of the representative to whom you speak and their guess about the future course of a disease in a response. specific individual. Before you leave the doctor’s office, make sure you Prognosis is based on the type of tumor, its grade, understand any instructions that were given. For location and spread (if any); the age of the patient; example, do you have another appointment? If so, how long the patient had symptoms before the when is it? If you are scheduled to have additional tumor was diagnosed; how much the tumor has tests, do you know why, when and where to go? affected the patient’s ability to function; and the Ask the doctor or nurse to write important dates extent of surgery if surgery was performed. and instructions in your notebook. The availability of successful therapies also QUESTIONS TO ASK influences the prognosis. A benign tumor located Whether you are just beginning treatment, are a in a vital area may be life threatening, while certain long term survivor or are somewhere in between, malignant tumors may be successfully treated with you probably have some unasked or unanswered radiation or chemotherapy. questions. You might be concerned about your WHAT HAPPENS NEXT symptoms or want to ask about treatment options. Your mind is probably racing with thoughts You may have obtained copies of your medical and filled with lots of questions. One way to records and read something you don’t understand. help stay organized and in control is to write Or perhaps you would like guidance about your questions in a notebook. Try listing your resuming your routine activities. questions by placing important questions near We encourage you to take these questions to your the top or number the questions in order of health care team. Your doctors and nurses can www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 46

46 CHAPTER 6: DIAGNOSIS Keep your notebook handy to record answers to respond with personalized answers which cannot – and often should not – be provided by outside your questions. Asking and answering questions is essential to participating in your own care. sources. By asking questions you’re participating in your health care. By gathering information, you’ll If treatment requires a hospital stay, ask the doctor feel more comfortable making decisions about your for the name of the hospital. Many doctors are treatment plan. on staff at more than one facility, so there may be options. Once the treatment and location In this section, we offer some sample questions you may want to ask at various times during your are finalized, the name of the hospital, the illness. Feel free to modify this list based on your hospital department and the day and time of the particular concerns and situation. appointment should be recorded in the notebook. Ask the doctor if any papers should be brought Following diagnosis, most questions focus on to the hospital. Also, check with your insurance the disease and its treatment. Later, they often company; they may need to pre-certify your include concerns about daily activities, nutrition, treatment or hospitalization. rehabilitation or medications. If a topic causes SECOND OPINIONS AND SEEING A concern at any point during care, it deserves to be addressed. SPECIAlIST After diagnosis, one of your next visits will likely 6 Questions to ask your health care team may be to a specialist. Regardless of whether the next include: step is a consultation regarding surgery, radiation, Where is the tumor located? • chemotherapy or another treatment, the basic questions are very much the same. • Based on the scans, do you have an idea of the type of tumor? Not everyone wants or needs a second opinion. Yet, for many patients and their families, speaking to • What do we do next? Do I need more tests? another doctor may help to better understand the Do I need to see any specialists? disease and treatment options. In some instances, an insurance company may require a second • Until we know more, can daily routines opinion before they will cover a surgical procedure. continue? Driving a car? Exercising? Either way, second opinions are considered Working? standard medical practice today. • Do I need to take any medication? If so, However, before seeking a second opinion, make what is it for? What are the side effects? sure it is safe to delay treatment. Can the tumor be operated on? • There are several ways to obtain a second opinion. • What are the risks in removing this tumor? Many doctors are willing to suggest a specialist and may even make the appointment. Most hospitals Are there treatments other than surgery? • offer physician referral services that can identify medical staff with expertise in treating brain If the tumor cannot be operated on, what • tumors. Many patients receive referrals from family treatment is recommended? and friends. Can treatment wait? How long? • Some insurance policies require patients to stay • within a network of providers. If so, ask your What might happen without treatment? insurer for a list of in-network doctors who 47 ABOUT BRAIN TUMORS

47 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers specialize in the treatment of brain tumors. An out- by state. Many states allow medical records to of-network doctor may result in additional costs be released directly to the patient. Other states and/or other responsibilities for the policy holder. require that medical records be sent directly to the It’s important to know what those obligations consulting physician. would be before selecting a doctor. The quickest way to obtain these records is from Once you select the consulting doctor(s), call their the doctor’s office. Copies of scans, pathology, office and ask about their procedure for obtaining a operative and consultation reports, as well as second opinion. Some doctors will review medical office visit records, are generally available from the records and scans, without the patient being doctor’s office. Your doctor may be able to access present. Others will ask to see the patient, too. your scans electronically and copy them for you. The doctor’s office can provide a list of the medical There may be a charge for providing a copy of records needed to render an opinion and the best medical records. way to have them delivered. The consulting doctor will also ask to see the actual Questions for a Specialist scans (not just the reports). If your doctor does not You’ll want to know: have the scans, call the hospital radiology or imaging department where the scan was done. MRI, CT, • What treatment is recommended? fMRI and PET scans can all be copied. Never send What is the goal of that treatment? To cure • an original through the mail! Since there is a sizeable the tumor, to control the tumor or to control fee to copy scans, get a list of the exact scans needed. symptoms? Some hospitals store reports and scans in electronic What are the potential benefits of the • or digital, files. These files can be copied onto a treatment? CD or DVD, transferred electronically or printed as traditional records. The consulting doctor can tell What are the risks and side effects of the • you which version is preferred. treatment? Some consulting doctors (and some patients) ask • What will happen if I don’t have this for a second reading of the pathology slides. To treatment or if I postpone it? obtain your slides, call the pathology department of the hospital where the surgery was performed. Are there other options beside this • treatment? Some slides can be copied. If they cannot be copied, ask if the hospital has a “paraffin block” • Is this an experimental treatment? sample of your tumor tissue. This is a larger piece of tissue, stored in a wax base, from which new Will I need any more tests before the • slides may be created. Paraffin blocks, due to their treatment begins? size, are usually kept only a few years. Slides may How will we know if the treatment was • be kept longer. Again, there may be a charge to effective? duplicate or ship the pathology slides. What type of follow-up will I need and • Written records of hospitalizations are kept in the when? medical records department of the hospital for several years. Afterward, they may be copied into OBTAINING MEDICAl RECORDS electronic files or otherwise archived. Medical records are needed for a second opinion. However, the laws for obtaining records vary www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 48

48 CHAPTER 6: DIAGNOSIS Before providing copies of hospital records, the most of your insurance questions can be found in medical records department will ask for the patient’s: the insurance policy itself or the policy manual. If you don’t have a copy, now is the time to obtain Name (the name under which the patient • one. was hospitalized) For employer-provided health insurance, contact Birth date • your employer’s Human Resources office or Social security number • your benefits manager and ask for the manual. For individual policies, call your insurance Approximate date of hospitalization • agent. For Medicare/Medicaid coverage, call the Medicare Hotline at 1-800-633-4227. For CHIP List of requested reports • (Comprehensive Health Insurance Programs) Some hospitals require a written authorization from coverage, contact your state department of the patient to release the records. insurance. Find out if the records will be released to the If you are uninsured, begin by contacting the patient or sent directly to the consulting doctor. social worker at the hospital at which you will be If the records need to be picked up, find out where treated. You can reach the social work department and when they will be available. If the records by calling the general hospital number and asking 6 are to be forwarded, the doctor or hospital will for the social work office. The social worker can need the consulting doctor’s name, address and outline federal assistance programs, local and telephone number. Find out when the records will national funding organizations and ways to help be sent and by what method. It may be best to you obtain alternate forms of health care coverage. have the records shipped by a company that has a Questions for Your Insurance Provider tracking system for packages. Be sure you know the answers to these questions: Finally, the consulting doctor should be alerted as • Do you need to obtain pre-certification for to when the records will arrive. The doctor should hospitalization or treatment? If so, who do be asked if he or she will provide the consultation you call? Most insurers include the pre- by phone or if an appointment is required. The certification telephone number on the back doctor will need enough time to appropriately of the insurance card. When you call, be review the records before rendering an opinion. sure to record the name of the person you speak with, the date and the “case number” Whether you’re the patient or a family member, it’s assigned to your claim. tempting to read through medical records before sending them on to a consulting doctor. However, Do you need to obtain a second opinion • these records are written in technical medical before non-emergency surgery? If so, are terms. The words and terms may be very new to there any limitations on who provides the you. They may be alarming because they can be second opinion? difficult to understand. Questions that arise about anything you find in the records can be written in • Do you need to stay within a particular your notebook and discussed with your health network of hospitals or physicians to receive care team. your benefits? Do you have a current list of those providers? What will happen if you are ABOUT INSURANCE treated “outside the network?” After your first visit, you’ll need to verify your health care insurance coverage. The answers to ABOUT BRAIN TUMORS 49

49 THE BRAIN TUMOR GUIDE For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Seizures Chapter 7: Seizures are common symptoms of a brain tumor. Between 25 and 40% of people diagnosed with a brain tumor will have a seizure at some time during their illness. A seizure can be a startling experience. However, understanding what a seizure is and what to do if one should occur, can minimize fear and potential injury. For some people, a seizure may be the first clue that something unusual is happening in their brain. Seizures might be caused by a brain tumor or by the surgery to remove it. Seizures can also be totally unrelated to a brain tumor. For example, an injury to the head, a stroke, alcohol or drug withdrawal, and fever can all cause seizures. Or, the cause may be unknown. Most seizures can be controlled with medications called antiepileptic drugs (AEDs). Surgery or a ketogenic diet are also sometimes used to help treat ongoing seizures. This chapter provides information and resources to help people affected by seizures understand what they are experiencing and to learn how to live with this symptom. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 50 www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 50

50 CHAPTER 7: SEIZURES SEIZURE WARNING SIGNS WHAT ARE SEIZURES? A seizure is an episode of abnormal electrical Most seizures occur randomly and without any particular cause. However, you might have some activity in the brain. advance notice. Learning these signals, called During normal brain activity, the body’s nerve cells auras, can help you prepare for a seizure. A communicate with each other through carefully headache, mood change, muscle twitch, dizziness controlled electric-like signals. Those nerve cells or a particular smell are auras that may happen a send thousands of signals back and forth, giving few seconds or minutes before the actual seizure instructions to all parts of the body. If something and might signal a coming seizure. Use that time interferes with those signals and they become more to safeguard yourself. If you are chewing, remove intense, a seizure results. the food from your mouth. If you are walking, sit or lie down. If you are with someone experiencing Some events may trigger seizures. Bright lights, an aura, assist them in finding a safe place. flashing lights, specific odors, lack of sleep, missed meals, menses, increased stress, alcohol, new HOW TO HElP SOMEONE medication or changed medication doses all can be DURING A SEIZURE triggers. Keeping a diary or journal of activities and Most people have never seen anyone have a feelings that occur prior to each seizure can help seizure. It is normal to feel concerned or anxious identify personal triggers. about the possibility. Learning what to do, in advance, may help calm some of those fears. What does someone having a seizure look like? Sharing this information with your family or This is a normal question. For some, jerky friends with whom you spend time, can help shaking and trembling may be the first thing you 7 prepare them as well. Remember that most see. Sometimes these body movements become seizures end naturally. extreme. In addition to unusual body movements there may be a change in awareness, unusual Your role becomes remaining calm and protecting sounds, visions or sensations. The type of seizure the person from environmental harm at a time depends on which part of the brain is experiencing they cannot protect themselves. Most of the time, a the abnormal electrical signals. person having a seizure requires no assistance other than a caring presence and observation. Other times, a seizure may be as simple as someone appearing to be “far away.” Still, for others, a seizure First, make sure the person is breathing. Loosen can take the form of music only they can hear or a clothes around the neck. Move pillows, blankets or phrase chanted repeatedly until the seizure is over. any other items away from the nose and mouth. If the person is having trouble breathing, immediately The person having the seizure will not be aware of call for emergency help. Do not place anything in the others around him during the seizure and may not person’s mouth as this could obstruct their airway. respond to touch or hearing their name. These are all normal variations of seizures. Although seizures If the person appears to be breathing well on their are usually brief, their effects may linger for several own, clear the area of sharp objects or anything hours. Recurrent seizures are referred to as epilepsy. else that could be dangerous. Remove the person’s eyeglasses. If possible, help the person lie on their Having a seizure does not automatically mean side. This helps keep their airway open. Protect your tumor is growing. If you experience a seizure the patient’s head from being bumped if they are after a long period of being seizure free, share this having a generalized seizure. Do not attempt to information with your health care team. They can restrain a person’s arms or legs during a seizure as best advise you as to your next steps in identifying this may result in an injury. Do not put anything in the significance of the new seizure activity. 51 ABOUT BRAIN TUMORS

51 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS Complex Partial Seizures the person’s mouth, including your fingers. During Complex partial seizures cause some loss of a seizure, anything placed in the mouth will block consciousness and usually indicate temporal lobe the airway and cause breathing problems. Also, involvement. Uncontrolled body movements as the jaw often clenches during a seizure, your might occur. The seizure may be preceded, fingers could be bitten. accompanied by or followed by psychic Most seizures last several minutes. After the symptoms. A state of confusion may continue seizure ends, allow time for the per son to recover. after the seizure activity. In patients with low- They may be confused for a few moments. This is grade gliomas, this is the most common type of normal. Help re-orient them. Tell them who you seizure. are, where they are and what happened. Help them Generalized Seizures find a place to rest until they have recovered. These seizures may begin as partial seizures and Call for emergency assistance if: abruptly change into generalized seizures. There The person is having difficulty breathing • are several different types of generalized seizures. • The person injures himself Absence (Petit Mal) Seizures Absence seizures cause a brief delay in The seizure lasts more than 5 minutes • consciousness and may be accompanied by a feeling of limpness. The person having the seizure • A second seizure immediately follows may miss a few words or stop speaking for a • The seizure occurs in water few seconds during a conversation. It may look like daydreaming. The beginning and end of the TYPES Of SEIZURES episode is usually sudden. This type of seizure There are two primary types of seizures – partial most commonly begins in childhood and often and generalized. The type you experience depends stops by young adulthood. on which area of the brain has the abnormal electrical signals. Atypical Absence Seizures Atypical absence seizures may cause more Partial Seizures extensive changes in muscle tone or they may There are two types of partial seizures – simple have a more gradual beginning and ending than and complex. typical absence seizures. Simple Partial Seizures Atonic Seizures (Drop Attacks) Simple partial seizures commonly cause jerking or Atonic seizures are characterized by sudden twitching (if the frontal lobe is involved), tingling limpness. Generally, all muscle tone and or numbness (if the parietal lobe is involved) or consciousness are lost. other sensations. These symptoms can begin in one part of the body and then spread to other Myoclonic Seizures areas. Chewing movements or lip smacking (if the Myoclonic seizures cause single or multiple anterior temporal lobe is involved), buzzing in the muscle twitches, jerks or spasms. ears, flashes of lights, sweating, flushing and pupil Tonic-Clonic (Grand Mal) Seizures dilation are other common symptoms. Psychic Tonic-clonic seizures are common in people symptoms include a sense of déjà vu, imaginary with low-grade gliomas, but can occur with any sights (if the occipital lobe is involved), smells (if type of glioma. The seizure involves a sudden the temporal lobe is involved), tastes or imaginary outburst, then a loss of consciousness, followed sounds. Simple partial seizures do not cause by twitching and relaxing muscle contractions. unconsciousness. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 52

52 CHAPTER 7: SEIZURES prescribed first due to the diet’s very strict food The person might bite their tongue, lose control restrictions. of body functions and take very shallow breaths. This usually lasts for two or three minutes USING ANTIEPIlEPTIC DRUGS and is followed by limpness. When the person The goal of drug therapy is always to control regains consciousness, they may be sleepy, have a seizures with the lowest effective doses of headache, be confused and/or have sore muscles. antiepileptic medication and with the least side Most people are able to return to their normal effects. There are several important points to activities after resting. If the seizure begins again, remember: call for emergency assistance. Maintain a Steady level SEIZURE TREATMENT Antiepileptic medications work best when there Seizures may be controlled in three ways. is a steady level of the drug in the body. The drug Sometimes, a combination of methods is used. needs to reach and remain at, the ideal level to be effective. Medication must also be taken regularly Medications and as prescribed. A double dosage should not Antiepileptic drugs (AEDs) are the most widely be taken if a dose is missed. Instead, the regular used method of controlling seizures. They are schedule should be resumed and the doctor prescribed to prevent seizures or to decrease their If you stop taking your medicine abruptly, notified. frequency. There are different types of AEDs – the seizure activity will increase. Call your doctor for type your doctor prescribes for you depends on assistance if you miss more than one dose, notice an your seizure history and the type of seizures you increase in your seizures or develop a rash. experience. 7 Check levels if Indicated Surgery Some medications require frequent blood tests in Surgery to remove the tumor may also stop or order to check the drug levels in the body. Ask the help control your seizures. Using sophisticated doctor if the medication should be monitored in brain map ping techniques, a neurosurgeon may this way. If yes, find out where and when to have be able to define the exact area of the brain caus- those blood tests done. The medications might be ing the seizures and surgically remove it. adjusted based on the results. Ketogenic Diet Minimize Possible Drug Interactions The ketogenic diet is a high fat, low carbohydrate Many prescription and over-the-counter diet that may help control ongoing seizures medications can influence the effectiveness of that do not respond to seizure medications. A AEDs. Inform your doctor of all medications doctor should carefully prescribe the balance and you are taking including vitamins, nutritional components of your daily food intake and the supplements and herbal remedies. diet must be carefully followed on a daily basis. Dieticians may also recommend necessary vitamin Alcohol also interferes with some antiepileptic and mineral supplements. Blood tests and close drugs. Check with your doctor before consuming monitoring are used to watch for side effects and alcohol. to verify effectiveness of the diet. Risks and Guidelines The ketogenic diet is primarily used to treat Your doctor or nurse will tell you how long the children for whom seizure medications are not antiepileptic medications will be needed. The effective. Some children combine the diet with decision is based on the seizure history, lower doses of seizure medications. Although adults could follow the diet, AEDs tend to be ABOUT BRAIN TUMORS 53

53 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS level. If itching accompanies the rash, a cool how often the seizures occur, your MRI scans, shower may provide relief by constricting the EEG (electroencephalogram) results and your treatments. The decision to taper off antiepileptic blood vessels in the outer layer of your skin. Pat your skin dry instead of rubbing. Do not use medication should be carefully planned by the doctor and patient, with all appropriate lotions on the rash unless your doctor or nurse precautions taken. Medication should never be suggests it. Do not take additional doses of the medication that may be causing the rash until you abruptly stopped without a doctor’s approval, as it have spoken with your doctor. may trigger a seizure. Bone Disorder If one medication doesn’t control the seizures, Long-term use of seizure medications may another drug or a combination of drugs may be prescribed. cause bone disorders. The amount of calcium in the bone may decrease causing brittle bones TIPS fOR MANAGING COMMON AED and fractures. Decreased levels of vitamin D SIDE EffECTS and phosphorus may also contribute to this Discuss side effects with your doctor – especially side effect. Bone and blood tests can monitor if they persist and do not feel manageable. The these conditions and supplementation may be following information may help you manage some recommended. Regular exercise also supports common side effects of seizure medications. healthy bones. Drowsiness or Dizziness Nausea and Vomiting For your own protection, do not operate Take your medication with meals to decrease equipment or machinery and do not drink stomach upset. If stomach upset continues, alcoholic beverages. Use caution on stairways. ask your doctor about anti-nausea (antiemetic) Install grab bars in the shower and next to the medication. Do not use over-the-counter antacids toilet. (These can be rented from a medical supply or aspirin-containing preparations for upset store.) stomachs without first checking with your doctor since they may interfere with some seizure Gum Swelling medications. Your gums may be inflamed, red, swollen, tender or bleeding. Good oral hygiene, with regular Continued Seizures brushing and flossing, is key in managing this side Some seizures simply do not respond to a given effect that is influenced by bacteria levels in the medication and you may have to try another mouth. If your gums are swollen, try using a soft medication. Flu vaccines, prescription and non- tooth brush or a mouth care sponge (available at prescription drugs can increase seizure activity. most drug stores). Avoid mouthwashes containing If you suspect that you are experiencing this alcohol that may burn and irritate your gums. problem, make a list of all your medications and Baking soda-based mouth rinses may provide share it with your doctor or pharmacist. Be sure relief. Be sure to tell your dentist about your to let your doctor know the frequency and type of medication. Frequent professional cleanings may your seizures and if the side effects of a particular help limit gum swelling. drug interfere with your quality of life. Discuss this with your doctor and ask about other options for Rash controlling your seizures. Notify your doctor immediately. A rash can indicate an allergic reaction to the seizure medication or may be due to an increased drug www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 54

54 CHAPTER 7: SEIZURES • Can I drive a car? If not, for how long? Notify Your Doctor Immediately If You: Is there anything else I can do to minimize • • Have any difficulty breathing or control the seizures, enhance the • Run a temperature effectiveness of seizure medication and/or • Notice the whites of your eyes appear lower the dose of the seizure medication? yellow • Have tiny purple spots on your skin What length of time do you anticipate that I • will need to take seizure medication? • Develop a rash • Become unusually confused • What tests do you use to evaluate if I need to • Have difficulty urinating continue taking the seizure medication over • Bruise easily time? lIVING WITH SEIZURES Chest pain or inability to awaken some- Seizures are generally unpredictable. Here are one taking seizure medications is always a medical emergency. a few suggestions for managing your seizure disorder. Questions for Your Doctor or Nurse about Seizure Stress Medications You may be able to reduce stress through exercise, meditation, yoga, guided imagery, deep breathing What is the name of the seizure medication • and/or coping skills training. Discussing your you have prescribed? 7 seizure disorder with family and friends may help diminish some of the stress. Talking with others Why did you choose that particular • who have a seizure disorder or with a professional medication for me? counselor can help you feel less isolated. Another • How much do I need to take and how often? option is to consult a neuropsychologist, a professional trained in the workings of the Do I need to have any tests to monitor the • brain and the psychological impact neurological medication in my blood and body? disorders can have on a patient and their family. Is there anything that might interfere with • Relationships its effectiveness such as other medications or Yes, seizures can be stressful to you – and they natural products? can also affect your relationships with family and friends. Communicating openly with your family • What are the most common side effects? and friends may help diminish some of the stress • What are less common side effects? seizures can cause. You may feel afraid of having a seizure around other people or you may feel • What side effects should I call the doctor “different” because of your seizures. Talking with about? others who have seizures can help you feel less isolated. A professional counselor can help you • What side effects lessen with time? with lifestyle adjustments. Or, consider reaching What strategies do you recommend for • out to a neuropsychologist – a professional managing side effects? trained in the workings of the brain and the psychological impact neurological disorders can • What precautions do I need to take due to have on a patient and their family. the seizure medication? 55 ABOUT BRAIN TUMORS

55 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Driving Laws prohibiting people with seizures from driving are designed to protect both you and other people from injury. Talk with a licensed health care professional to explore alternative transportation methods, join a carpool and offer to pay extra for the gas, contact your city’s public transportation center, ask if your church or a faith-based community organization offers volunteer drivers or check to see if your community offers a shuttle bus/discounted taxi services for seniors or those with a disability. For more information about seizures, including “Seizure First Aid Tips” clings for the home or office and tips for living with seizures, visit www. , call 800-886-ABTA (2282) or send an abta.org email to [email protected] www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 56

56 THE BRAIN TUMOR GUIDE A Primer for Patients and Caregivers For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS Chapter 8: Pediatric Brain Tumors Children are not smaller versions of adults. Their bodies and brains are still developing. Their needs are different. Their tumors are different, too. The most common childhood brain tumors are not the same as the most common adult brain tumors. Though rare, brain tumors are the most common form of solid tumors among children under the age of 15 and represent about 20% of all childhood cancers. Childhood tumors frequently appear in different locations and behave differently than brain tumors in adults. Treatment options vary and can be strongly influenced by the age of the child. Children with tumors may also have a much better prognosis than adults with a similar condition. In this chapter, you will learn more about the characteristics of brain and spine tumors as well as the most common forms among children. ABOUT BRAIN TUMORS 57

57 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers social workers; child life specialists and others. BRAIN TUMORS IN CHIlDREN Additionally, since most of these programs are at Most pediatric brain and spine tumors are primary teaching hospitals, medical residents and fellows tumors, meaning they originated in the brain or will be involved in your child’s care. spine. The most common types of brain tumors in children are astrocytoma, medulloblastoma and Parents or other significant caregivers are also ependymoma (see Chapter 3 for specific tumor critical members of the care team. You are your descriptions). This is a full listing of pediatric child’s best and most important advocate when tumor types: it comes to medical care. You will have lots of • AT RT questions. You will have to make many decisions. Talk with your medical team early and often. It Brain stem glioma • can take some time for all of the pieces to fall into place. Be patient with yourself. There can be a good • Choroid plexus tumors, choroid plexus deal to learn. carcinoma, choroid plexus papilloma TREATMENT OPTIONS • Craniopharyngioma Treating brain and spine tumors in children is • Cysts different than treating adults. Children’s brains and bodies are still developing, so there are • Desmoplastic infantile astrocytoma different considerations and standards of care. For most children, treatment starts with surgery. A • Ependymoma biopsy following surgery will help to classify and Germ cell tumors • grade the tumor. • Medulloblastoma Following surgery, additional treatment may be required. Possible therapies include: • Neurofibromatosis • Chemotherapy • Oligodendroglioma • Conventional radiation therapy • Optic glioma • Stereotactic radiosurgery, a precise form of PNET • radiation therapy If your child has been diagnosed with a brain Stem-cell rescue, blood and marrow • tumor, you probably have very specific questions. transplantation Your doctor can respond best to your concerns Interventions to address side effects of the • about the tumor, the treatment plan and what to tumor or the treatment expect in the future. THE CARE TEAM • Rehabilitation to regain lost strength and Pediatric brain tumors require specialized skills care that is most often provided by a team of • Ongoing follow-up care for long-term specialists at a large medical center or pediatric management and to detect recurrence of hospital. The team may include pediatric the tumor neurosurgeons; pediatric oncologists; pediatric radiation oncologists; rehabilitation specialists Clinical Trials in occupational therapy, physical therapy and Your doctors may suggest that your child be speech therapy; pediatric nurse specialists; enrolled in a clinical trial. Clinical trials offer www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 58

58 CHAPTER 8: PEDIATRIC BRAIN TUMORS patients access to the newest therapies while TAlKING TO YOUR CHIlD OR TEEN they are being developed. The ABTA can assist You don’t have to have all the answers when your parents who want to better understand the risks child is the patient, but you do need to have and benefits of clinical trials, patient rights and conversations. Most medical teams have a social protections in a trial and more. Contact the ABTA worker or child life specialist who can help you for more information on clinical trials, as well as explain the diagnosis, tests and treatments in a other pediatric brain tumor resources. way your child or teen will understand. Accurate information presented in a non-threatening, The ABTA also offers a service that links brain appropriate way can prevent children from age- tumor patients with appropriate clinical trials based imagining explanations that are scarier than the on the patient’s tumor type and treatment history. truth and can help them better cope with tests ® TrialConnect , is a free and confidential service. and treatments. Avoiding the topic does not For more information, call 877-769-4833 or go to eliminate the concerns or questions your child . www.abtatrialconnect.org has, even if they do not express them. MAINTAIN YOUR CHIlD’S MEDICAl Open, honest and loving conversations help to INfORMATION address fears and misconceptions. Create an It is important that you keep records of your atmosphere where your child will want to ask child’s treatment. Survivors of childhood brain questions or return to the topic whenever new tumors need to be monitored throughout their questions or concerns arise. Some children will lives by doctors who are aware of their medical want lots of details; others will not. Follow your history. As your child matures into adulthood, child’s lead. his or her future doctors will need to know the history of the tumor, completed treatments, Discussing the diagnosis, tests and treatments specific procedures and drugs used. Sometimes is also an important opportunity to reassure survivors of childhood brain tumors experience your child or teen. Children and teens have 8 effects later on in life from the treatments misconceptions that must be addressed, including: they have received. Access to detailed medical This illness is not the result of something • information will help your child monitor and you did or did not do. It is not related to address any late effects of treatment. your behavior or your thoughts. It is not a punishment. IMPACT Of A PEDIATRIC BRAIN TUMOR AMIl ON THE f Y • A tumor is not contagious. You cannot “get When a child has a brain tumor, it affects the it” or “give it” to anyone. entire family. Emotions can be raw. Stress and anxiety levels rise. Family schedules are more You are still you. Having a tumor in your • hectic than ever. Parents and others can quickly brain does not change who you are. It also find themselves sleep deprived, worried and does not change my love for you. stretched beyond their capacity. • Be prepared for difficult questions including To help you, the ABTA offers a wide range of “Am I going to die?” Be honest and direct. support services for parents, caregivers, patients Tell your child that everyone is different and others. To learn more about how this diagnosis and reacts differently to the illness and the can affect your family and learn ways to help cope treatment. Together with your medical team with the challenges see Chapter 9 on Coping. you are doing everything you can to make the illness go away. ABOUT BRAIN TUMORS 59

59 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS For more topics or sample explanations for talking to demonstrate some small measure of control to children with a brain tumor, see Chapter 9 over what is happening in their lives. “Coping” on pg 63. IMPACT ON RElATIONSHIPS SIBlINGS A crisis can bring out the best in relationships, When a child has a tumor, the impact of the but that is not always the case. A crisis and its situation quickly extends to the entire family. aftermath can strain healthy relationships and Routines are disrupted. Priorities are shuffled. expose cracks in struggling relationships. Parents are pulled away from other day-to-day Whether you are married or divorced, maintaining activities to attend to the needs of the child. a relationship with a co-parent can be difficult Necessity requires brothers and sisters to be left while caring for a child with a brain tumor. Issues in the care of other family or friends. Everyone is you have struggled with in the past can return. worried. Guilt, anxiety, exhaustion and stress can complicate Siblings can feel confused, neglected and guilty. In relationships even further. Try to maintain the rush of medical needs, it can be easy to short communication and honor the experience of others change conversations with brothers and sisters. going through the situation. Be open and honest Even at an early age, children sense when there with your care team regarding relevant family is something wrong. They may even think that history, custody and other emotional concerns that they created the problem. Keeping brothers and may spill over into the care environment. sisters informed helps them feel connected to their Be aware of the problems that can emerge in other sibling. Provide honest, age-sensitive information. family relationships including those with extended Address Their fears and Concerns family members, in-laws, step families and the Common misconceptions arise among siblings, like. Each person has a legitimate interest in the too. “Can I catch it? Did I cause it? Will I get child and the child’s treatment. Yet, it can be very it?” The social worker or child life specialist on frustrating and time consuming to communicate your medical team can help you communicate with each of them. Consider designating a close effectively with family members, too. friend or other family member to serve as a “spokesperson” keeping all informed and updated. Engage Them The treatment process can be lengthy. Siblings can ABTA Careline feel as if all the attention and energy is spent on ABTA’s Careline can be a family’s single best just one child in the family. Once the immediate resource. Health care professionals work with crisis passes, find ways to reconnect. Share a meal, patients, families and caregivers daily to address a goodnight book, a conversation while driving. a wide variety of needs. They are caring, Focus on quality, not quantity. Even if you have compassionate and trained professionals who just a little time to spare, devoting your undivided listen with their heart and respond with wisdom attention to others in the family will make a and resources accumulated over many years. difference. They can help you connect with a wide range of support services available to you through Involve Them the Internet and through community-based or Oftentimes, brothers and sisters want to help. institution-based resources. To connect with the They want to visit the hospital, send cards, ABTA, please call the CareLine at 800-886-ABTA organize a bake sale. If that is the case, try to . [email protected] (2282) or send us an email at find ways for them to help. It will give them a concrete way to process their own emotions and www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 60

60 CHAPTER 8: PEDIATRIC BRAIN TUMORS ABTA Connections Online Support Community • Seizures and other neurological issues The American Brain Tumor Association Hormonal problems including slowed • Connections online support community connects growth, hypo- or hyperthyroidism, diabetes, patients, families, friends and caregivers for early or late puberty, and infertility support and inspiration. Unlike social media outlets such as Facebook or Twitter, Connections • Damage to internal organs or other body is a more private setting where members can ask systems questions of their peers, provide updates on their • The possibility of developing secondary personal situations and gain confidence in and cancers in other parts of the body or a comfort through communicating with others who recurrence of a tumor in the brain may be traversing a similar brain tumor journey. Learn more at www.abta.inspire.com. lifetime Monitoring & Maintaining Medical Records lATE EffECTS Of TREATMENT Childhood brain tumor survivors need to be Treatment decisions can have unintended closely monitored. Most large pediatric brain consequences. These complications, known tumor treatment programs have specific survivor as “late effects” of treatment are not unique to programs. These programs provide specialized children. However, because children can live for health monitoring throughout childhood. They many decades post-treatment, it is essential that also identify specific risks based upon a thorough parents and other caregivers be aware of them. review of the child’s medical history including Surgery, radiation therapy and chemotherapy can identification of risks associated with specific all contribute to late effect complications. tumor types or interventions. As a child enters Late effects vary considerably based upon multiple adulthood, survivor programs help families factors including a person’s age, tumor type and transfer ongoing care out of the pediatric setting location, treatment type and duration. Some 8 and into a medical program that can provide the effects may be apparent almost immediately, but specialized monitoring the patient will need as an some may not emerge until years after treatment adult. has stopped. It is extremely important that brain Parents and caregivers should maintain or know tumor survivors of all ages be followed by a how to access a complete, detailed medical record medical team versed in late effects throughout of their son or daughter’s treatments. As more their lifespan. information is known regarding the effects of Some of the more common complications of specific treatments, your child’s medical record treatment are listed below. Some can be addressed will provide the information needed to better through rehabilitation and other accommodations. understand your child’s specific risks and influence All require ongoing monitoring. the recommended course of follow-up. Physical disabilities such as weakness of • Your medical team is the first line of defense to muscles and diminished coordination address late effects and to ensure close monitoring Learning disabilities including problems • of your child’s condition. with memory, attention, comprehension For more information on near- and long-term and information processing effects of pediatric brain tumors and/or adolescent and young adult resources visit . www.abta.org • Behavioral changes and emotional issues • Hearing and vision problems ABOUT BRAIN TUMORS 61

61 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS Tap Into Special Education Services RETURNING TO SCHOOl As a return to school nears, meet with the “I think it’s time to go back to school.” After principal and primary teacher and/or special weeks or even months of treatment and recovery, education coordinator to discuss necessary these words are cause for celebration among accommodations. Bring brain tumor information children and parents. For many, returning to from the ABTA with you to share. This is school is an important milestone on the road to your opportunity to discuss your child’s normalcy. diagnosis, treatment and the resulting physical, As wonderful as it is, the transition to school does neuropsychological, emotional, social and/or require special attention and care. Your school-age behavioral changes. son or daughter may have significantly different If your child has physical or learning disabilities needs today and you may have lots of concerns following a brain tumor diagnosis and/or related and questions. Additionally, for some, a return to treatment, your child may qualify for benefits or school is not a singular event as much as it is a accommodations under one of two federal mandates; fluid shifting of time spent at home, at school and The Individuals with Disabilities Education Act in care. (IDEA) or The Rehabilitation Act of 1973 – Section Start Early 504. Returning to school is an exciting time, but it To access services under these mandates, request a can be overwhelming for parents and children. school evaluation for your child. This will include Returning students have weathered difficult a series of educational tests to determine how your treatments that may have altered learning child learns best and what type of accommodations capabilities, behavior, strength, energy levels, will help your child to optimally learn. These coordination, speech, hearing or eyesight. It may services are usually coordinated by your school be the first time your school has worked with a district’s special education department. family in your specific situation. Communicating with the school early and often during treatment Neuropsychological Testing will help smooth the way for a good transition. There is ongoing research which shows that children treated for brain tumors may experience While you child is still recovering in the hospital, neuropsychological effects following treatment. contact their school regarding your child’s Neuropsychological testing is done to help define diagnosis and treatment. Keep teachers updated. It the impact and identify learning disabilities. It is critical to talk to your child about what he or she can be used to assess processing speed, attention, may (or may not) be comfortable revealing about visual motor integration, planning and organizing this personal situation. Once informed, teachers skills, visual and verbal memory, reading and classmates can be a tremendous source of comprehension, math calculation, and applied much-needed support during hospitalizations and abilities. home stays through cards, letters, phone calls, texts, social media and personal visits. Ideally, baseline testing is done before treatment starts and is done again prior to returning to Try to maintain education goals during treatment. school. Neuropsychological testing will help assess Work with the school to complete assignments at needs and identify the necessary accommodations home during recovery. Read to your child and keep for a student to succeed in a classroom them engaged with learning as much as possible environment. during the time away from school. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 62

62 CHAPTER 8: PEDIATRIC BRAIN TUMORS The neuropsychological testing may be used to complement school administered evaluations. Monitor and Advocate When your child first returns to school, you may wish to plan regular meetings with their teacher or counselor to better understand how things are progressing in the classroom. Ask about your child’s behavior, signs of fatigue, excessive frustration or depression. Check in frequently with your child. Ask questions. Monitor performance. Be aware of changes and be prepared to request modified or new accommodations at school as the circumstances require. You must advocate for your child’s education in the same way that you advocated for medical care. Work closely with teachers and the school. Involve your medical team if necessary. Turn to the ABTA for help and additional resources. For more information on pediatric brain tumors, please visit www.abta.org , call our CareLine at 800-886-ABTA (2282) or send us an email at . [email protected] 8 ABOUT BRAIN TUMORS 63

63 A Primer for Patients and Caregivers THE BRAIN TUMOR GUIDE For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS Coping Chapter 9: Whether you are an individual with a brain tumor, a caregiver, family member or friend, you may still be trying to make sense out of the words “brain tumor.” You may be experiencing feelings of fear, uncertainty and isolation. It is important to know that these feelings are normal and that you are not alone. This chapter offers some helpful suggestions from professionals who specialize in helping people cope as well as some practical advice from other brain tumor survivors and their loved ones. www.abta.org www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 64 AMERICAN BRAIN TUMOR ASSOCIATION 64

64 CHAPTER 9: COPING feelings. The important thing to remember is that YOUR fEElINGS AND REACTING TO THE we all experience a wide array of emotions and it DIAGNOSIS all depends on how we acknowledge and cope with A brain tumor diagnosis can cause many them. emotional reactions: shock, denial, anger, resentment, guilt, reflection, anxiety, loneliness, A Special Note on Anxiety and Depression depression, resignation, acceptance and hope. While being treated for a brain tumor, it is not uncommon for patients to experience anxiety Along with an initial shock, many people go or depression. These two common side effects through a state of temporary denial. Patients should also be monitored and treated by your and family members may feel traumatized and health care team as any other physical condition. depressed or become numb and hide or deny their feelings. Some people may refuse to discuss or even Anxiety acknowledge their diagnosis. The denial can last a It is normal for people to experience anxiety few days to a few weeks or even a few months. when going through stressful times. Many people feel “anxious” while waiting for test results As time passes, denial often evolves into a feeling or when returning to the doctor for follow-up of anger. For patients, the thought “Why me?” is visits. Symptoms of anxiety include a sense of common. Life may feel very unfair. Some people fear, a feeling that “something bad” is going to develop a sense of resignation about living with happen, a rapid heart rate, perspiration, nausea, the physical or emotional changes that may come shortness of breath, dizziness or a feeling of with a brain tumor diagnosis. Others may feel unreality. It is important to talk to your doctor resentment because they or a loved one has this about your physical symptoms even though they disease and other people do not. For some people, may be psychologically based. Sometimes, just this resentment may turn into depression. the reassurance that your doctor provides will A sense of acceptance will eventually set in as you be enough to relieve your anxiety. If your doctor realize that the brain tumor is a reality. Once you determines that the symptoms warrant treatment, come to grips with the diagnosis, you can begin to he/she may suggest medication or an appointment plan how to move forward. This may be a time to with a psychiatrist, psychologist or social worker. 9 reassess your values, think about how you want Depression to live your life and look at your career choices. While depressed feelings can be normal, some Find ways to maintain positive, close and loving people may become very depressed and need relationships with your family and other important help in dealing with these feelings. Some of the people in your life. symptoms of major depression are: persistent It may sound strange, but some feel that their depression or no feelings whatsoever; irritability; personal lives change for the better after a major loss of enjoyment and pleasure in people or diagnosis such as a brain tumor. It does make activities that are normally enjoyable; difficulty people re-evaluate their lives, often in a much more sleeping – such as trouble falling asleep, waking positive direction. If you use every minute of the too early, being unable to fall asleep again or day in a valuable and meaningful manner, there is sleeping too much; loss of appetite; or wanting much to hope for and look forward to. to give up or to inflict self-harm. When these feelings persist for more than two weeks or There is no one single way to deal with your when they are severe, it is important to bring the emotions. One day you may feel better and the next symptoms to the attention of a doctor. The doctor day feel uneasy again. Not everyone shows their will determine whether these are signs of major emotions, nor does everyone experience the same 65 ABOUT BRAIN TUMORS

65 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS Although many people will be supportive, there depression and if so, will provide direction. The will be friends who simply find it difficult to doctor may prescribe medication or suggest a deal with or even acknowledge your illness. Not psychiatric consultation. Depression is treatable, knowing what to say, some people may avoid but must first be diagnosed. contact or conversation. Also, be prepared for Y AND fRIENDS AMIl INClUDING f well-meaning friends and neighbors who insist Life is about to change. For many, it helps to share upon telling you stories about “miraculous” your situation with family and friends who can cures. Don’t let their second- and third-hand offer support and help you work through your news make you feel obligated to start yet another options. But telling your family and friends that information search. Thank them for their concern, you have a brain tumor can be difficult. If you but remember that what works for one person may are uncomfortable with doing this on your own, not be appropriate for another. There are many consider having a care conference or meeting with different types of brain tumors and many different your doctor, health care team and the primary treatments. If you have questions, ask your doctor. members of your family. Written publications Y AMIl CHANGES WITHIN THE f and educational materials about brain tumors With time, a circle of friends will emerge with can serve as a supplement to the conversation whom you are comfortable and upon whom you by providing helpful, easy-to-understand can count on for help and support. information. Shifts may occur within the family system, as Like you, your family needs time to process everyone reacts to the brain tumor diagnosis. A and understand your diagnosis. A family that spouse or significant other may begin to worry understands your diagnosis and available treatment more or wonder how things will get done. Spouses options has the opportunity to be supportive and or significant others may feel a sense of loss as they helpful. assume the role of caregiver or seem bewildered as Social workers can help with communication they take on responsibilities previously handled by challenges between you, your family and friends the other person. by facilitating conversations about associated Every marriage survives by a set of “unwritten” thoughts and feelings. A social worker can also rules that partners live by in their everyday lives. suggest appropriate coping techniques. To locate During the years of marriage, spouses take on a social worker, try contacting the social services certain roles, such as caretaker or provider within department at your local hospital. In addition, the family. They work out the labor issues for social workers are available at community centers, the household and establish guidelines for their social service agencies, government health agencies intimate relationship and personal friendships. and schools. The diagnosis of a brain tumor can change those If friends offer to help, accept their offers. You will rules. Neither spouse may know exactly how to benefit from the assistance and your friends will react to each other, especially if caretaker and feel needed. Groceries, laundry, driving, weeding provider roles have changed. Some couples find the garden, a meal on the day of your doctor visit, they start feeling uncomfortable with each other, transportation to the clinic for therapy – there are not as close and sense they are losing the intimacy many possibilities. Keep a “wish list” of things you of their relationship. You may begin arguing or wish you had the time to do. When someone offers disagreeing with each other. At this moment, there to help, reach for that list. Or create an online make is a temptation to pull further apart. Instead, calendar with tasks that need to be done. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 66

66 CHAPTER 9: COPING a dedicated effort to talk with your spouse about imaginations to fill in the gaps; their fantasies can the changes that are taking place and the emotions cause undue fears and anxieties. Give children involved. information in words they understand. Use their questions as a guide to the amount of information While the news of a major medical diagnosis is they want; do not provide them with more than disruptive to a person’s personal and family life, they ask. Be prepared for questions that aren’t it can equally be an opportunity for renewal, easily answered; reply honestly and simply. hope and a new relationship. Spouses should talk Answer what is asked of you in words appropriate about the changes in their lives. Acknowledge the for their age. need for flexibility now and find some rules that you can both agree upon and live by. If you have Remember that very young children have little a difficult time doing this, seek the advice of a experience with disease – their first questions trusted friend, a religious advisor, social worker or may focus on the practical. They may want to psychologist. A professional may be able to help know who will prepare dinner or put them to bed. with the adjustments and changes associated with Tell them what it means to “go to” or “be in” the the medical diagnosis and its effect on personal hospital. Simple drawings may help – and don’t relationships. worry about being an artist. Use their questions as a guide to the information you convey. Think about the ways you’ve handled previous crises in your life. Are you comfortable sharing There are many books available that can help your concerns? If so, to whom do you usually parents explain their illness to children. Read turn for support? Do you prefer sharing with a these books with your children; offer them the close family member or a close friend or do you opportunity to ask questions and to express their turn to those you may not know well, such as a fears and concerns. Young people often have counselor or a support group? Do you find comfort remarkable insight and can be a source of great in religion? Think about the methods you normally comfort. Most importantly, remember that children use to deal with problems. Even a long shower, of all ages need to be reassured that you have relaxing music or meditation techniques can be of planned for their needs. Explain those plans and help now, too. arrangements to your children, making sure they 9 know you are still very much involved, even if from As you move further into the brain tumor a distance. experience, you’ll begin to find resources you didn’t know existed. There are people willing to help How Do I Tell Them? What Do I Say? – you are not alone. Reach out, learn as much as These sample explanations can be adapted for you can and become an active participant in your conversations with children. health care. Begin by eating healthful meals, even “The doctor wants to do some tests to find • when you’re not very hungry. Moderate exercise (if out why I am getting sick to my stomach and approved by your doctor) can help fight fatigue, having headaches...” or, “The doctor wants depression and improve your sleep. If you wish, to do some tests to find out why you are allow yourself to feel unhappy – but realize there is having headaches.” help available to those whose sadness is consuming • “A neurosurgeon is a doctor who knows a lot or excessive. about the brain.” TAlKING WITH CHIlDREN If you are a parent with young children and • “An MRI scan takes a picture of the brain, you have a brain tumor, try to anticipate but it cannot see what you are thinking.” your children’s concerns. Children use their ABOUT BRAIN TUMORS 67

67 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS Older children may link the diagnosis to stories “A brain tumor is a lump in the brain that • doesn’t belong there. The doctor is going to of illness they’ve heard from friends or personal experience with grandparents or neighbors. Give operate and take it out. The operation will help get rid of the headaches.” older children the opportunity to ask questions or share their concerns. “Is there anything you’d “A brain tumor is a collection of abnormal • like to ask?” can be difficult to say, but can open ‘cells’ in the brain which are growing out of the door to clarifying misinformation as well as control. These cells were originally normal providing reassurance. brain cells, but something inside of them Some children, especially pre-teens and teenagers, changed. For no good reason, they started to may begin to act out. They may get in trouble, divide and make more of themselves. This begin to have problems in school or begin to do growing collection of abnormal cells is called things they normally would not do. This is usually a tumor.” a sign that the child is having trouble coming to “With a tumor in there, the computer • grips with what is happening within the family. center of my brain can’t work the way it is It may be time for more direct action. A serious supposed to. That’s why I have headaches discussion with the child is very important at and seizures.” this stage. Involve them in the day-to-day family activities. If the behavior persists, it is time to seek • “No one knows for sure what causes a brain professional help, such as counseling or family tumor. They just happen. But we do know therapy. Many families find that after the initial that nothing you did or thought or said diagnosis children learn to adjust and adapt to the caused the tumor. Nothing you ever wished news, especially if the parents are consistent and in made this happen. Nothing your brother or agreement regarding family matters. sister or friends said made this happen. We also know that you don’t ‘catch’ brain tumors Most importantly, remember that children of all from other people.” ages need to be reassured of love. They need to know that they will be cared for during the parent’s “Would you like to talk about this? Is there • illness. Neighbors and relatives can help keep the anything that you would like to ask?” children’s routines as normal as possible. Plan ahead for special events. If an ill parent is unable Above all, reassure your children they are loved to make the school play or watch softball practice, and will be taken care of. perhaps an aunt, uncle or friend can fill in. It also is important for parents to try to ensure Although it won’t be the same without their parent, that routines within the family change as little as the child will know that mom or dad cared enough possible. Children find the “daily rules of family to ensure that someone would be there. life” very important. They feel safe and thrive The ABTA can help with sample conversations; under day-to-day conditions that are easy to predict, are consistent and make them feel safe. support groups for parents, children and siblings; and other information. Contact the ABTA CareLine Therefore, it is important that parents agree not at 800-886-ABTA (2282) or [email protected] only on what to tell their children, but how to . keep their lives as normal as possible. If schedule REDUCING STRESS changes become necessary, try to make the new For most people, fears of the unknown and schedule repeatable so it becomes a “routine.” an uncertain future can cause great stress. The sameness will be a comfort to your children. This is normal. Give yourself permission to be temporarily overwhelmed. Then, take a few deep www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 68

68 CHAPTER 9: COPING irritability around these days is normal. Plan ahead breaths and begin to think about the things you and make activities simple and memorable. can control. Here are a few ideas for reducing stress: If anyone in the family is having difficulty adjusting Ask family and friends to help with • to the diagnosis, family therapy may be helpful. household responsibilities. A trained, professional therapist, especially one specializing in the treatment of chronic illness or Find someone to assist you in completing • grief reactions, can help guide families through medical forms and claims. this crisis. Close friends, religious leaders or your health care professional can be a source of • Participate in planning your treatment. emotional and physical strength. Friends may • Help determine your medication or be able to search for community and medical treatment schedules. resources of value to you. Contact your library, local civic organizations, village hall or religious Decide which chores are important and • institutions. Many community programs are which can be temporarily ignored. available – learn what they are and take advantage • Choose to share or not share your of their services. Each resource you find makes it experience with others. The choice is yours. easier for you and your family to cope with your new situation. Be kind to yourself by listening to music, • from Patient to Patient: journaling, reading a book or taking a mid- Suggestions for Coping and Managing Stress afternoon nap – indulge in relaxing activities These suggestions were provided by brain tumor that can recharge you. patients and their families. We hope you find If you are a family member or a caregiver, permit some ideas to be helpful. yourself to take some “time off” to focus on your • Get a second (or third) opinion from doctors own needs. Call upon other relatives or friends who specialize in brain tumors. To be an to serve as relief workers so you can take a much effective advocate for yourself, you’ll need needed respite. information on all your options. 9 Communication is an important part of reducing • Ask your doctors this question: “What stress. Talk to your family about your needs, questions should I be asking that I don’t feelings and responsibilities. Listen to their know I should be asking?” concerns as well. Sometimes one person will take on too many responsibilities. Or, in trying to Don’t be afraid to talk about your fears and • protect others, a family member may not express feelings – you are not alone. People do care her/his own needs. Taking the time to talk – about and are willing to help. what needs to be done and who can reasonably do it – allows everyone to feel useful and avoids • Relax your need for control. You’ll save your feelings of resentment. Relaxation, meditation or energy. imagery techniques can also help reduce stress Take advantage of help offered to you. • for you and your family. Consider taking a class Family, friends and neighbors can make together. life easier, if you let them. And don’t worry Birthdays, holidays or anniversaries can be a about repaying the favors. difficult time for your family. Anxiousness or ABOUT BRAIN TUMORS 69

69 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Allow yourself to cry. It’s a good escape valve If you are having a difficult time coping, seek • • for both women and men. professional help. Set short term goals so you can feel good • Read – about brain tumors, new treatments • about your progress. and about brain tumor survivors. Be positive and do not feel defeated. Find one thing good about each day. • REACHING OUT fOR SUPPORT • Laughter helps. Most of us don’t want to be alone when facing a crisis. Emotional support from family, friends Find purposeful things to do – a daily • and loved ones can give us comfort and strength. morning walk with a friend or invite your However, this support may not be enough and grandchild to lunch weekly. there is often a need to connect with others • Keep a journal. It’s a special place all for in similar situations. There are many ways to reach for support but not all types of support yourself. are appropriate for everyone. We offer some • Decorate a small box with bits of costume information and resources to help patients and jewelry, brightly colored paint, wonderful families decide which support resources might be pictures from old magazines. Put your best for them. worries in it and tightly close the lid. Support Groups Be kind to yourself. Take time to pamper • Patients and families often find help through yourself, make time to play, be lazy when brain tumor support groups. A support group you need to. is a face-to-face gathering of people seeking to share their experiences with one another with the • Set your own limits, not those expected by help of a support group facilitator. They come for others. emotional, social and possibly, spiritual support. There are different types of support groups for Know that symptoms usually worsen in the • darkened evening hours. This is generally adults, parents of children with brain tumors, when everyone is tired and defenseless and children and siblings. While not for everyone, support groups may provide a comfortable, safe at their worst. Arranging for outside support forum to share experiences and concerns, as well or visitors in the evening may help. as practical information and strategies for dealing Find someone to confide in. For both • with the diagnosis and treatment of a brain tumor. patients and families, support groups can be Support groups are located throughout the country invaluable. They can help you know you are and most are open to both patients and family not the only one dealing with this situation. members. In large groups, patients and family Take breaks from the brain tumor world. Go • members may meet separately. Support groups to a movie, have a picnic in the park, invite often vary in their formats. Some are strictly friends to join you at a concert. Make time to supportive, while others are strictly educational; do this regularly, even if “regularly” is only many groups are both supportive and educational. once a month. Groups also are either “open” or “closed” to new Find a spiritual leader or contact your • members. Most groups are “open” and ongoing, clergy. meaning that members may join or leave the group as their needs change. There can be much stability www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 70

70 CHAPTER 9: COPING Chat rooms are generally real-time discussion in these groups. However, as members come and go, the personality of the group may continually forums, similar to a phone call among a group of change. In contrast, time-limited “closed” groups individuals, although the conversation is written meet for a fixed period of time – for example, six to and not heard. These discussions may or may not be moderated. In a moderated discussion, someone is eight weeks – with the same individuals. Once the screening the content to ensure that only appropriate group starts, it is closed to new members until the end of the specified time period. text is posted. All groups, whether open or closed, ongoing Email discussion groups, sometimes called “listservs,” and bulletin boards are forums where or time-limited, may meet weekly, monthly or messages can be posted and read by individual quarterly, depending on the needs and desires subscribers at their convenience. This form of of the group members and the availability of the communication is more like reading a letter than facilitator(s). Some groups are professionally talking on the phone. The letter can be read, thought facilitated and some are not. In a professionally facilitated group, a social worker and/or nurse about and responded to at any time. Most listservs provide guidance and direction. They also monitor require that users subscribe or register prior to member interaction to ensure that everyone’s sending a message. Some are moderated, some are needs are being addressed. Groups that are not not. In moderated groups, someone is responsible professionally facilitated may be less structured and for screening the messages to ensure that they more closely resemble a self-help group. are not offensive and pertain and conform to the specified subject and purpose of the forum. The major advantage of a face-to-face support group Another factor to consider is the privacy policy of is the warmth and closeness that often develops when people, who are typically living in the same an online forum. A privacy policy lets users know whether or not their personal information is being community or area, interact with and support each collected as they use the forum, how that information other on a very personal level. Face-to-face support is stored and whether or not it is shared with people groups are not a viable option if there is not one in outside the forum. your community and/or if the group location and meeting time are not convenient for you. 9 Online forums allow individuals to communicate If you are not comfortable with a particular group with a potentially large number of people, far beyond those in an immediate geographic vicinity. or it doesn’t meet your needs, try another one. Finding the “perfect” support group can take time And participants can go online to “check-in” with and can be a process of trial and error. the forum, read and send emails at their leisure. On the downside, in addition to the privacy concerns To find the support group closest to you, contact the ABTA CareLine at 800-886-ABTA (2282) or and the potential anonymity of participants, online communications – while seemingly with one person send an email to [email protected] or a small group – are available to the entire site Online Support Resources or forum membership. This may include “lurkers” For people who do not have access to a regularly – people who are anonymously and invisibly scheduled face-to-face support group or for those monitoring discussions. Despite the best efforts of who prefer email communication, online support sponsors to adhere to their privacy policies, Internet resources are an important option. There are many communication is never private. Therefore, with different types of online forums that allow you to a large group of people unknown to you, It’s best communicate with one or many individuals who to only share information that you are completely share your specific circumstances. comfortable sharing with strangers. 71 ABOUT BRAIN TUMORS

71 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS ABTA Connections Online Support Community When seeking a neuropsychologist, one factor The American Brain Tumor Association to consider is whether or not the psychologist Connections online support community connects is board certified. Board certification refers patients, families, friends and caregivers for to the certificate received once post-training support and inspiration. Unlike social media examinations have been successfully passed. This outlets such as Facebook or Twitter, Connections is a mark of high distinction in the profession. is a more private setting where members can ask A neurologist or neurosurgeon can recommend questions of their peers, provide updates on their a board certified neuropsychologist or you can personal situations and gain confidence in and contact the ABTA for more information at 800- comfort through communicating with others who [email protected] 886-ABTA (2282) or send an email to may be traversing a similar brain tumor journey. . abta.org Members also maintain full control of their WHERE DO WE GO fROM HERE? privacy settings without the distraction of ads Eventually, the treatments are completed and the and instant messages. Learn more at www.abta. medical appointments get further apart. The pace inspire.com slows and another period of adjustment begins. Individual/family Counseling It is a time when it can be difficult to do nothing Professional counseling can help with more after having done so much. complex issues or when informal support does Your task now is becoming well again. Make not adequately meet someone’s needs. Clinical appointments for your follow-up doctor visits or social workers, clinical psychologists, marriage scans and mark them on your calendar. Begin to and family therapists and clinical professional rebuild your life within the guidelines set by your counselors can offer one-on-one and/or family health care team. Learn about healthful eating. counseling when more formal assistance is Exercise within the guidelines given to you by your needed. For help in locating a professional doctor. Get out, see friends and be good to yourself. counselor or therapist, please contact the ABTA But be patient – getting well takes time. CareLine at 800-886-ABTA (2282) or send an e-mail to . [email protected] The brain tumor world will always be some part of your life, even if it’s somewhere in the past. Learn Neuropsychologist where it belongs and what feels comfortable for A neuropsychologist is a mental health your family. Your priorities will also change with professional with expertise in assessing and time. That’s okay. The changes reflect your ability treating problems of psychological functions and to adapt. Talk with your family and build this new behavior, as they relate to the brain and central future together. nervous system. You and your family may continue to have A neuropsychological evaluation involves a questions about living with a brain tumor, wish to variety of tests to assess one’s ability to remember, keep abreast of the newest findings in brain tumor pay attention, use language, problem-solve and treatment or learn more about the research that will conceptualize. It also can assess perceptual and someday lead to a cure. The ABTA website, www. motor abilities, emotional state, behavior and abta.org, offers extensive brain tumor information, personality. A complete assessment can take six to treatment and research updates, lists of family and eight hours. professional brain tumor meetings and conferences, Neuropsychological treatments include teaching and information about upcoming ABTA events. ways to help individuals improve their impaired functions by learning strategies to compensate for lost or weakened abilities, despite limitations. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 72

72 THE BRAIN TUMOR GUIDE A Primer for Patients and Caregivers For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS For the Caregiver Chapter 10: When someone we love is ill, we want to do everything we can to help them. Being a caregiver to a family member or close friend can be one of the most rewarding experiences a person can have. It also can be frustrating, lonely and overwhelming, especially when combined with the ongoing stresses of everyday life. Remember that you are not alone and resources are available to help you as a caregiver. Trying to manage the logistics – not to mention the emotional impact – of a brain tumor diagnosis can challenge even the most caring and compassionate caregivers. Taking care of yourself is just as important as taking care of your loved one. That can mean being kind to yourself, asking others to help, taking time away from the patient or allowing yourself a quiet moment to think and reflect. The following suggestions can help you get the assistance you need, while ensuring that you continue to care for yourself. As with any list of suggestions, pick those that work best for you. ABOUT BRAIN TUMORS 73

73 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS AllOW YOURSElf TO ASK QUESTIONS ACCEPT ASSISTANCE If there are no other members of your household The words brain tumor can be overwhelming. It’s or relatives close by, look to friends or members common for families to make a visit to the doctor, of your church or social group for help. Often, hear terms and phrases they’ve never heard before people want to help but are not sure what they can and then be asked to make a decision. Back at do. Be prepared to respond to their offers. Try to home, there may be a flood of doubts as to what was heard and whether it was understood. If determine the time, money or energy commitment they are willing to make and give them one or two you have questions about the information your family was given, call the doctor. If you did not suggestions that fit their level of commitment. Some people may be available on a one-time basis understand something that was told to you or you have additional questions you forgot to ask, call to run an errand, baby-sit or help with a particular the doctor. The doctor believes you understand household chore. Others may be available more regularly or for longer periods of time. Ask for help everything that was said unless you speak up. with grocery shopping, cooking and freezing meals, And, having answers to your questions can be a yard work, household repairs, driving car pool great stress reducer. or driving to therapy appointments. Those living ASSESS WHAT YOU NEED further away may be able to help with financial Have a clear sense of what it is that would be needs, filing insurance claims or searching for most helpful to you as a caregiver. To do this, ask support resources. yourself: “What help or information, if it were If people offer help at a time when you really do available, would make caregiving significantly not need it, tell them how much you appreciate easier right now?” Be very specific. Do you need help with the grocery shopping or someone to their offer and their friendship. Suggest they ask again in a few weeks or ask if you may call on them come in a few times a week so you can get out if your needs change. You also can suggest they of the house? If you need to talk to someone, are help in some less tangible way such as making a you looking for a sympathetic ear or someone to visit, saying a prayer or lending a supportive ear help you solve a problem? Be selective about the information and resources you choose. Always when you need it. come back to the question: “What is it I need?” ACCESS HOME HEAl TH CARE as opposed to “What is available?” Home health care agencies and caregivers are available to offer additional support and respite DElEGATE RESPONSIBIlITY care. Skilled services may include medical care Don’t do everything yourself if there are others in and/or physical, occupational and speech therapy. your family who can help. Sit down and discuss Home health aides may help with personal what each member of the household – including services like bathing, dressing, eating and children – can do and develop a schedule of household chores. Adult day care also is available responsibilities. Take into account each person’s in many communities. ability, maturity and availability. Remember that not everyone can or should, be directly involved UTIlIZE ONlINE SUPPORT GROUPS AND in caring for the patient; there will be other tasks WEBSITES which also need attention. Look beyond the There are a variety of Internet-based resources, immediate relatives for help – even those further including online support groups, listservs, away can participate on some level. Finding chat rooms, message boards and other Internet others to handle family tasks will give you more communities of interest, through which time to care for your loved one and yourself and, caregivers can share information and support thus, help reduce stress. each other. There are also websites focused on www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 74

74 CHAPTER 10: fOR THE CAREGIVER the needs of caregivers. These Internet-based TAKE CARE Of YOUR BODY forums offer an alternative for those who do not It is not uncommon for caregivers to neglect have access to a face-to-face support group in their own health while trying to provide the best their area or who prefer to communicate and seek care possible for the person they are caring for. information by the Internet. Most online forums And yet neglecting your health can leave you require that you subscribe or register prior to vulnerable to exhaustion and disease. To prevent sending messages. After subscribing as directed, illness, do a regular self-check to see how you are you’ll receive a confirmation as well as a welcome feeling. Ask yourself: “How am I feeling today? message. Each forum has its own etiquette rules When was the last time I saw my doctor for a and procedures. Save those guidelines; they will check-up or for treatment of an ongoing problem? also tell you how to unsubscribe should you so Is it time to make an appointment?” Make sure choose. The group may also provide you with you are eating regular, nutritious meals; exercising directions for obtaining your email in digest (check with a doctor before starting any new form, a simple way of gathering all the participant exercise routines) and sleeping regularly. messages into one email or one folder. DISCUSS YOUR fEElINGS Connections Online Support Community ABTA Having someone to talk with also can be very The American Brain Tumor Association Connections helpful. A relative, a friend or a member of your online support community connects patients, clergy all can be important parts of your social families, friends and caregivers for support and network. Sometimes it helps to let that person inspiration. Learn more at www.abta.inspire.com. know that you don’t expect answers or solutions, just a sympathetic ear. If you are seeking advice, BE KIND TO YOURSElf look for someone who will continue to be When you are feeling particularly self-critical, supportive even if you decide not to take their stop and ask yourself “What would I say to a advice. And make sure you feel better after talking friend who was feeling guilty about something with the person you select. Support that doesn’t he or she did or neglected to do?” or “Would I feel like support usually isn’t. think less of my friend or would I understand that he or she is doing the best anyone could under Support groups with other caregivers can be the circumstances?” When we apply this test, another valuable resource. Many of these groups I think most of us have no problem letting our welcome family members and caregivers. We can hypothetical friend “off the hook.” When you fall provide you with a list of support groups in your 10 short of your expectations, be at least as kind to state. Call the ABTA CareLine at 800-886-ABTA yourself as you would be to a good friend. (2282) or email [email protected] . BE ASSERTIVE If you find that friends and family and other non- Learn to say no . Set limits on your time. Be professional support resources just aren’t enough realistic about what you can and cannot be or you continue to feel consistently overwhelmed, responsible for right now. Consider asking friends you may wish to consult with a mental health to visit during hours that are convenient for you professional. Your doctor can refer you to one. and your loved one. If you find yourself with Professional mental health associations also can visitors who sometimes “wear out their welcome,” help you locate someone in your area. ask if you might use the time during their next MAKE TIME fOR YOURSElf visit to run errands. Try to take a break from caregiving for at least a few hours or longer each week, if you can. It can ABOUT BRAIN TUMORS 75

75 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers • Laugh. The importance of laughter cannot be difficult to leave your loved one, especially if be overemphasized. Laughter can ease they are very ill, but it may be the most important tension, promote relaxation and help you thing you do for that person and for yourself. reconnect with the joy of living. Taking this time is not being selfish. Rather, it is critical in order for you to continue caring for THE ABTA IS HERE fOR YOU your loved one’s physical and emotional needs in You don’t have to go through this journey alone. a loving and helpful way. The American Brain Tumor Association is here to help. Use your time to do something that you enjoy or find relaxing. Meditation, guided imagery and Visit us at www.abta.org to find additional exercise or movement classes may reduce stress. brochures, read about research and treatment Even simple everyday activities, such as going for a updates, connect with a support community, join walk, listening to soothing music or reading a good a local event and more. book can give you a break from responsibility and We can help you better understand brain tumors, worry. treatment options, and support resources. Our team of health care professionals are available via KEEP IT SIMPlE email at [email protected] or via our toll-free Most importantly, try to keep life as simple as CareLine at 800-886-ABTA (2282). possible during this challenging time: • Be flexible. This is not to discount the value of routines. However, we all encounter situations where we are just “out there winging it.” Don’t be afraid to try doing things in different ways. Re-evaluate your needs and priorities. What was important before your family member became ill, like having an immaculate house, may not be important now. And some things that weren’t important before, like getting enough sleep or finding time for you, may be crucial now. Adopt a problem-solving approach. Break down what you need to accomplish into smaller steps and then brainstorm ways to get from one step to the next. • Decide to do one thing today. This simple strategy can be very helpful when you feel you are not accomplishing anything, despite always feeling busy. Simply decide to do one thing you’ve been putting off and just do it. It can be something as simple as cleaning out a file, doing the laundry or making a phone call to the insurance company. Once you have done that “one thing,” it’s amazing how much better you feel being able to cross it off your mental “to-do” list. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 76

76 THE BRAIN TUMOR GUIDE ABOUT BRAIN TUMORS A Primer for Patients and Caregivers For Newly Diagnosed Patients and Their Families Chapter 11: Brain Tumor Facts and Statistics The facts and statistics here include brain and central nervous system tumors (including spinal cord, pituitary and pineal gland tumors). We continually update these statistics, as they become www.abta.org . This available, on our website, material was last updated in 2014. We thank the Central Brain Tumor Registry of the United States (CBTRUS) for their assistance with that update. These numbers address incidence, trends and patterns in the United States only. For more information, please visit CBTRUS at . www.cbtrus.org ABOUT BRAIN TUMORS 77

77 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers more than 138,054 persons were living with a fACTS AND STATISTICS malignant tumor and more than 550,042 persons Brain tumors do not discriminate. Primary brain were living with a non-malignant tumor. tumors – those that begin in the brain and tend to stay in the brain – occur in people of all ages, but they are statistically more frequent in children and older adults. Metastatic brain tumors – those that begin as a cancer elsewhere in the body and spread to the brain – are more common in adults than children. Brain tumors are the: Leading cause of cancer-related deaths in • children (males and females) under age 20 (leukemia is the first) • Second leading cause of cancer-related deaths in males ages 20–39 (leukemia is the first) • Fifth leading cause of cancer-related deaths in females ages 20–39 Incidence Statistics An estimated 68,470 new cases of primary brain tumors are expected to be diagnosed in 2015 and includes both malignant (23,180) and non- malignant (45,300) brain tumors. These estimates are based on an application of age-sex-race- specific incidence rates from the 2014 CBTRUS Statistical Report using 2007-2011 SEER and NPCR data to project 2015 US population estimates for the respective age-sex-race groups (estimation methodology can be found at www.idph.state.il.us/cancer/statistics.htm#PR ). In 2015, approximately 4,620 children between the ages of 0-19 will be diagnosed with primary brain tumors. In 2015, an estimated 3,420 new cases of childhood primary brain and central nervous system tumors are expected to be diagnosed in children ages 0 – 14. Prevalence Statistics It is estimated that during the year 2010 more than 688,096 people in the United States were living with the diagnosis of a primary brain or central nervous system tumor. Specifically, www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 78

78 CHAPTER 11: BRAIN TUMOR fACTS AND STATISTICS TUMOR-SPECIfIC STATISTICS • Meningiomas represent 36% of all primary brain tumors, making them the most common primary brain tumor. • Gliomas, a broad term which includes all tumors arising from the gluey or supportive tissue of the brain, represent 28% of all brain tumors and 80% of all malignant tumors. • Glioblastomas represent 17% of all primary brain tumors and 54% of all gliomas. Astrocytomas and glioblastomas combined represent 76% of all gliomas • • Nerve sheath tumors (such as acoustic neuromas) represent about 8% of all primary brain tumors. • Pituitary tumors represent 13% of all primary brain tumors. • Lymphomas represent 2% of all primary brain tumors. • Oligodendrogliomas represent 2% of all primary brain tumors. • Medulloblastomas/embryonal/primitive tumors represent 3% of all primary brain tumors. • The majority of primary tumors (36%) are located within the meninges, followed by those located within the frontal, temporal, parietal and occipital lobes of the brain (22%). Metastatic brain tumors are the most common brain tumor. Although statistics for brain metastases are not readily available, it is estimated that there are more metastatic than primary malignant brain tumors per year. The cancers that most commonly metastasize to the brain are lung and breast. ABOUT BRAIN TUMORS 79

79 THE BRAIN TUMOR GUIDE For Newly Diagnosed Patients and Their Families ABOUT BRAIN TUMORS A Primer for Patients and Caregivers Brain Tumor Chapter 12: Terminology Basal Ganglia The basal ganglia are masses of nerve cells deep within the cerebral hemispheres (the two halves of the cerebrum, the largest area of the brain). Brain Stem The brain stem is the bottom-most portion of the brain. It connects the cerebrum (largest area of the brain) with the spinal cord. The midbrain, pons, medulla oblongata and reticular formation are all part of the brain stem. Cerebellopontine Angle The cerebellopontine angle is the angle between the pons (part of the brain stem) and the cerebellum (second largest area of the brain). Cerebellum The cerebellum is the second largest area of the brain. It is located in the portion of the brain in the back of the head between the cerebrum and the brain stem. It consists of two lateral lobes and a central lobe. Cerebrospinal fluid (CSf) Cerebrospinal fluid is the clear, watery fluid made in the ventricles that bathes and cushions the brain and spinal cord. It circulates through the ventricles and around the surface of the brain. Cerebrum/Cerebral Hemispheres The largest area of the brain is the cerebrum, which consists of the right and left cerebral hemispheres. In general, the right cerebral hemisphere controls the left side of the body and the left cerebral hemisphere controls the right side of the body. Each hemisphere is comprised of four sections called lobes: frontal, parietal, temporal and occipital. Each lobe controls a specific group of activities. www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 80 www.abta.org AMERICAN BRAIN TUMOR ASSOCIATION 80

80 CHAPTER 12: BRAIN TUMOR TERMINOlOGY MAJOR PARTS Of THE BRAIN CSf AND VENTRIClES Parietal lobe frontal lobe lateral Subarachnoid Space Ventricles Occipital lobe Third Ventricle Temporal lobe Pons Cerebellum fourth Ventricle Medulla Oblongata The outer layer of the cerebrum is made up of gray Glial cells are the origin of the largest percentage matter (nerve cells that control brain activity). of brain tumors, i.e., astrocytomas (including The inner portion of the cerebrum is mostly white glioblastoma), oligodendrogliomas and matter with nerve fibers (axons) that are insulated ependymomas. Astrocytes are involved with by a fatty substance (myelin). White matter carries the blood brain barrier and brain metabolism. information between nerve cells by conducting Oligodendrocytes maintain the myelin covering electrical impulses. of nerve cells. Myelin helps transmit information between nerve cells. Choroid Plexus The choroid plexus produces spinal fluid that flows Hypothalamus through the ventricles (cavities) and meninges The hypothalamus regulates sleep cycles, body (membranes) surrounding the brain and spinal temperature and other metabolic processes. It acts cord. like an endocrine gland by producing hormones and sending messages that control the hormonal Corpus Callosum secretions of the pituitary gland. The corpus callosum is made of nerve fibers, deep in the brain, that connect the two halves of the Medulla Oblongata cerebral hemispheres. The medulla oblongata, a part of the brain stem, connects the brain with the spinal cord. It Cranial Nerves contains the origins of the 9th, 10th, 11th and Cranial nerves are the twelve pairs of nerves that 12th cranial nerves. 12 originate in the brain. Meninges Glial Tissue (Neuroglia) The meninges are three membranes that Glia, the supportive tissue of the brain, is made completely cover the brain and the spinal cord. up of glial cells. The most common glial cells are Spinal fluid flows in the space between two of the astrocytes and oligodendrocytes. Ependymal cells membranes. are another form of glia. 81 ABOUT BRAIN TUMORS

81 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS CRANIAl NERVES view from bottom of brain – Smell ACTORY I Olf Olfactory Bulb II OPTIC – Vision – Eye Movement & Pupil Size III OCUlOMOTOR IV TROCHlEAR – Eye Movement – Sensation in the Face, Nose, V TRIGEMINAl Optic Chiasm Mouth, Teeth, Cornea; Chewing and Facial Expression – VI ABDUCENS Eye Muscle Pituitary Gland fACIAl – Facial Expression, Tears, Saliva, VII ² ⁄ Taste (front of tongue) ³ Pons VESTIBUlOCOCHlEAR VIII – Hearing, Balance (also called Acoustic Nerve) Throat Movement, IX – GlOSSOPHARYNGEAl Cerebellum 1 of tongue) ⁄ Sensation in the Throat, Taste (back ³ VAGUS – Sensation in the Throat and Windpipe; X Muscles of the Throat, Windpipe organs of the Chest & Abdomen Movement of the Neck XI ACCESSORY – Medulla Oblongata XII HYPOGlOSSAl – Tongue Movement & Spinal Cord Swallowing Meningioma is a tumor that arises from the pituitary produces several hormones including meninges. prolactin, corticotropin and growth hormone. Midbrain Pons The midbrain is the short portion of the brain Pons is a part of the brain stem that contains the stem between the pons (part of the brain stem) origins of the 5th, 6th, 7th and 8th cranial nerves. and the cerebral hemispheres. The 3rd and 4th Posterior fossa (Infratentorium) cranial nerves originate in the midbrain. The tentorium separates the posterior fossa from Optic Chiasm the cerebral hemispheres. The area below the The optic chiasm is the area under the tentorium is called the infratentorium or the hypothalamus where each of the two optic nerves posterior fossa. This area within the skull contains crosses over to the opposite side, forming an X the cerebellum and the brain stem. The area above shape. the tentorium is called the supratentorium. Pineal Gland THE PITUITARY GlAND The pineal gland lies below the corpus callosum Hypothalamus (the nerve fibers that connect the two halves of the cerebral hemispheres). It produces the hormone melatonin, which is believed to control Pituitary Gland the biological rhythm of the body. Pituitary Gland Pituitary Stalk The pituitary gland is attached to and receives Sella Turcica messages from, the hypothalamus. It is composed of two lobes, the anterior and the posterior. The AMERICAN BRAIN TUMOR ASSOCIATION www.abta.org 82

82 CHAPTER 12: BRAIN TUMOR TERMINOlOGY Reticular formation SKUll BASE The reticular formation is the central core of the brain stem. It connects with all parts of the brain Sphenoid Bone Cribiform Plate and brain stem. of the Ethmoid Bone Optic Canal Sellar Region (Suprasellar, Parasellar) The sellar region is the area around the sella turcica, a hollow in the skull bone that contains the pituitary gland. Skull Base The skull base refers to the bony areas that support the bottom of the frontal lobes, the bottom of the temporal lobes and the brain stem Temporal Bone and cerebellum. foramen Magnum Spinal Cord Posterior fossa The spinal cord is made up of neurons and their Occipital Bone extensions (nerve fibers). It begins in the medulla oblongata (part of the brain stem) of the brain and continues through the hollow center of the THE TENTORIUM vertebrae (the bones of the spine). The spinal cord Cerebral Hemispheres is covered by the meninges (membranes) through lateral Ventricle which the cerebrospinal fluid flows. Third Supratentorium Ventricle Above the tentorium is The supratentorium is the area above the “supratentorial” tentorium containing the cerebral hemispheres. Tentorium Tentorium Below the The tentorium is a flap of meninges separating the tentorium is “infratentorial” cerebral hemispheres from the structures in the fourth or the Ventricle “posterior posterior fossa. fossa” Spinal Cord Thalamus The thalamus surrounds the third ventricle. It processes and relays sensory information and regulates motor functions. It also regulates sleep There are two lateral ventricles, one in each and alertness. cerebral hemisphere. The third ventricle is beneath the corpus callosum and surrounded by the Ventricles 12 thalamus. The fourth ventricle is an expansion of These are connected cavities (the lateral, third the central canal of the medulla oblongata. and fourth ventricles) that contain cerebrospinal fluid. The fluid is produced by the choroid plexus and flows through the ventricles and the space between membranes of the meninges. 83 ABOUT BRAIN TUMORS

83 A Primer for Patients and Caregivers ABOUT BRAIN TUMORS Cross Section of the Brain CROSS SECTION Of THE BRAIN CENTRAl NERVOUS SYSTEM Central Nervous System Side View of the Brain SIDE VIEW Of THE BRAIN • American ain Br T umor Association 800-886-2282 AMERICAN BRAIN TUMOR ASSOCIATION www.abta.org 84

84 TM Providing and Pursing Answers The American Brain Tumor Association (ABTA) is a trusted resource for brain tumor patients, caregivers and health care professionals around the country. From a wide range of publications to webinars and educational programs, our goal is to ensure that you have the tools and information you need. Visit our web site at www.abta.org to see a full scope of all that we provide. Our complete line of patient education publications can be downloaded from our web site, and hard copies can be requested by calling our CareLine at 800-886-ABTA (2282). ClINICAl TRIAlS AMERICAN BRAIN TUMOR ® : www.abtatrialconnect.org or TrialConnect ASSOCIATION PUBlICATIONS 877-769-4833 AND SERVICES More brain tumor resources and information CARE & SUPPORT CareLine: 800-886-ABTA (2282) are available at www.abta.org. Email: [email protected] PUBlICATIONS About Brain Tumors: A Primer for Patients and Caregivers Brain Tumor Dictionary Tumor Types: Ependymoma Glioblastoma and Malignant Astrocytoma Medulloblastoma Meningioma Metastatic Brain Tumors Oligodendroglioma and Oligoastrocytoma Pituitary Tumors Treatments: Chemotherapy Clinical Trials Conventional Radiation Therapy Proton Therapy Stereotactic Radiosurgery* Steroids Surgery All publications are available for download in Spanish. (exception is marked *)

85 ABOUT BRAIN TUMORS A Primer for Patients and Caregivers NOTES/QUESTIONS 86 AMERICAN BRAIN TUMOR ASSOCIATION www.abta.org

86 AMERICAN BRAIN TUMOR ASSOCIATION ABOUT BRAIN TUMORS To find out how you can get more involved locally, contact [email protected] or call 800-886-1281 For more information contact: CareLine: 800-886-ABTA (2282) Email: [email protected] Website: www.abta.org Mail: 8550 W. Bryn Mawr Avenue, Suite 550, Chicago, IL 60631 A Primer for Patients and Caregivers FGS0415

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