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the Essential Guide to Brain Tumors

caregiving clinical trials causes treatment options support seeking help understanding the brain Diagnosing symptoms survivorship treatment team complementary medicine The Essential Guide to Brain Tumors

National Brain Tumor Society (NBTS) is a leader in the brain tumor community, bringing together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals.

We invest wisely and strategically across the research spectrum, seeking new therapeutic targets and improving existing treatments, which will ultimately lead to a cure. Our staff and advisory team encourage research that connects directly to patient care and enhances quality of life for all brain tumor patients.

National Brain Tumor Society offers top-notch resources and caring support for everyone affected by brain tumors. We provide education and information to help patients, families, and caregivers make informed decisions and develop strong support systems during every stage of the journey.

If you’d like to get involved, receive help, volunteer, or make a gift, contact us at 800 770 8287 or visit www.braintumor.org.

Patient Services 800 934 2873 Toll Free 800 770 8287 www.braintumor.org Dedication Table of Contents

Karen Osney Brownstein and Elizabeth “Libby” Stevenson conceived of and Acknowledgments...... 1 Introduction...... 3 authored the original National Brain Tumor Guide in 1986 for brain tumor Chapter 1: Understanding the Brain...... 5 patients and their families. They created the Guide to offer a supportive and The Central Nervous System...... 5 jargon-free resource to the brain tumor community. The Guide continues The Sections of the Brain...... 6 The Internal Nerve Structures of the Brain...... 7 to speak in very human terms to those confronting the trauma of their own Chapter 2: Diagnosing a Brain Tumor...... 8 medical crisis, letting them know that they are not alone, and that there are Brain Tumor Symptoms...... 8 Neurological Examination...... 8 vast resources available to them during a time of confusion and need. Scans and Imaging Techniques...... 9 Biopsy...... 12

As a member of the Board of Directors of the National Brain Tumor Foundation, one of the legacy organizations Chapter 3: Known and Possible Causes...... 14 of today’s National Brain Tumor Society, Karen’s tireless work—always laden with great wit and enthusiasm—was Incidence Rates...... 14 centered on the creation of the Guide. Karen—a teacher and author— survived her brain tumor but was stricken Brain Tumor Trends...... 14 with a lung disease that caused her untimely passing in 1989. Her spirit and her vision continue to thrive in this new Known and Possible Causes...... 16 updated version of the Guide. Direction for Future Studies...... 18

Elizabeth “Libby” Stevenson served as the first Executive Director of the National Brain Tumor Foundation and later Chapter 4: Brain Tumor Types...... 20 on its Board of Directors. Libby was diagnosed with a brain tumor in 1980 and survived her disease for over 20 years Classifying Brain Tumors...... 20 until she passed away in 2003. Her gracious manner and infectious smile served as an inspiration to all who met her Primary Brain Tumors...... 21 and provided hope and compassion to other brain tumor survivors. She lived by her motto “always, there is hope” Glial Tumors and was an ever-vigilant advocate for brain tumor patients. The Essential Guide to Brain Tumors is proudly dedicated to these two pioneers in the brain tumor community—Karen Osney Brownstein and Libby Stevenson. Astrocytoma...... 21 Pilocytic Astrocytoma...... 22 Low-Grade Astrocytoma...... 22 Anaplastic Astrocytoma...... 22 Glioblastoma...... 22 Brain Stem Glioma...... 23 Ependymoma...... 23 Mixed Glioma...... 24 Oligodendroglioma...... 24 Optic Nerve Glioma...... 25 Subependymoma...... 25 Non-Glial Tumors Karen O. Brownstein Elizabeth “Libby“ Stevenson Acoustic Neuroma...... 26 Chordoma...... 26 CNS Lymphoma...... 26 Craniopharyngioma...... 27 Hemangioblastoma...... 27

National Brain Tumor Society | 800 934 2873 | www.braintumor.org National Brain Tumor Society | 800 934 2873 | www.braintumor.org Medulloblastoma...... 27 Meningioma...... 28 Acknowledgments Pineal Tumor...... 28 Pituitary Tumor...... 29 Primitive Neuroectodermal Tumors (PNET)...... 29 Rhabdoid Tumor...... 30 National Brain Tumor Society (NBTS) wishes to thank all the people whose Schwannoma...... 30 generous contributions of funds, expertise, and good will made possible Recurrent Tumors...... 30 Metastatic Brain Tumors...... 31 the publication of The Essential Guide to Brain Tumors. Other Tumor-Related Conditions...... 31

Chapter 5: Brain Tumor Treatments...... 32 We are grateful to the following health professionals who volunteered their assistance in the writing of The Essential Tumor Board...... 32 Guide to Brain Tumors. Medical Management...... 32 The Treatment Team...... 33

Surgery...... 34 • Terri S. Armstrong, MS, APRN, BC • Peter Gruen, MD Radiation Therapy...... 37 University of Texas M.D. Anderson Cancer Center, University of Southern California, Chemotherapy...... 39 Houston, Texas Los Angeles, California Clinical Trials...... 40 • Mitchel S. Berger, MD • Philip Gutin, MD Biologic/Targeted Therapies...... 42 University of California, San Francisco Memorial Sloan-Kettering Cancer Center, Complementary and Alternative Medicine (CAM)...... 44 Medical Center, San Francisco, California New York, New York

Chapter 6: Symptom Management...... 47 • Melissa Bondy, PhD • Yuriko Minn, MS Physical Symptoms...... 47 University of Texas M.D. Anderson Cancer Center, Stanford University, Stanford, California Cognitive and Behavioral Symptoms...... 48 Houston, Texas • Kathleen Mogensen, MS, ANP-C Headache...... 49 • Susan Chang, MD Roswell Park Cancer Institute, Buffalo, New York Seizures...... 49 University of California, San Francisco • Margaretta Page, RN, MS Fatigue...... 51 Medical Center, San Francisco, California University of California, San Francisco Blood Clots (Thrombosis)...... 51 Medical Center, San Francisco, California Other Symptoms...... 52 • Terri Chew, MPH University of California, San Francisco • Kendra Peterson, MD Chapter 7: Survivorship...... 53 Medical Center, San Francisco, California Stanford University, Stanford, California “Survivor” Defined...... 53 • Tim Cloughesy, MD Dealing with Emotions and Grief...... 54 • Michael Prados, MD University of California, Los Angeles University of California, San Francisco Managing Follow-up Care...... 56 Medical Center, Los Angeles, California Medical Center, San Francisco, California Returning to Work...... 58 • Charles Cobbs, MD • Raul Rodas, MD Chapter 8: Suggestions for Caregivers...... 60 California Pacific Medical Center, San Francisco, Central Florida Regional Hospital, Neurohealth Taking Care of the Caregiver...... 60 California Sciences Center, Sanford, Florida Getting and Managing Information...... 60 • Nancy Conn-Levin, MA • Evan Ross, LAc, DOM Seeking Help...... 61 Monmouth and Ocean County Brain Tumor Support Cedars-Sinai Medical Center, Los Angeles, California Impact on the Family...... 62 Group, Inc., Oakhurst, New Jersey Emotional Issues...... 63 • Edward Roy, PhD • Mark R. Gilbert, MD University of Illinois at Urbana-Champaign, Urbana, Glossary...... 65 University of Texas M.D. Anderson Cancer Center, Illinois Index...... 71 Houston, Texas

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• Raymond Sawaya, MD Many thanks to the following NBTS volunteers, brain University of Texas M.D. Anderson Cancer Center, tumor survivors, family and friends who donated their Introduction Houston, Texas time and expertise reviewing The Essential Guide to Brain Tumors. • Edward Shaw, MD Wake Forest University School of Medicine, • Mike Coda “Why me? That’s a natural question but I doubt if you’ll ever get an answer. Winston-Salem, North Carolina • Marcelo Ho Why not me? The answer is because no one is immune. It is Me! This is • Karen Smith, RN, CNRN • Rachel Kimball University of California Davis Health System, where you are today. Take it one day at a time, face what you’re up against, • Scott and Cheryl Norris Sacramento, California assemble your plan to combat it, and most of all, believe in yourself and • Richard Pittman • Paul Sperduto, MD your plan.” Methodist Hospital HealthSystem Minnesota, • William and Janet Thoma — Linda Kendall, Hemangioblastoma survivor, diagnosed in 1986 Minneapolis, Minnesota • Ximena Vergara

• Geline Tamayo, MSN, CS • Becky Withers University of Texas M.D. Anderson Cancer Center, No one can prepare to be diagnosed with a brain resource to help you navigate new medical terminology, Houston, Texas The information in this publication is subject to change. The tumor. It shatters your sense of well-being and personal as well as offer emotional and practical advice for the reader is advised that information obtained from a physician security. It is common to experience a flurry of emotions challenges you may face. Because the Essential Guide is • Jeannine Walston should be considered more up to date and accurate than the and feelings when you receive the news that you have comprehensive, rather than focused on one particular Writer, Healing Focus information in the publication and that this publication does a brain tumor. One moment you may feel angry and type of tumor or treatment, you may find that some not and cannot purport to address facts and circumstances overwhelmed, then dazed and numb the next. Many of the information does not pertain to your needs. The • Susan M. Weisberg, LCSW particular to any patient. This is something that can only be personal and practical questions come to mind: why Essential Guide to Brain Tumors is not meant to replace Stanford University Medical Center, Stanford, done by the patient's physician. Sponsorship of this publication me? Where will I turn for help? How will my family cope medical advice, but to inform you and assist you in your California does not imply the National Brain Tumor Society's endorsement emotionally and economically? In a short time, you and quest for answers, information and support. or recommendation of any particular form or forms of therapy, • Margaret Wrensch, PhD your family are expected to make important decisions regimen, or behavior. The information in this publication is not The Essential Guide to Brain Tumors begins with a look University of California, San Francisco meant to be legal advice or replace the advice of an attorney. about your treatment and future, many of which are at how the brain functions. It then discusses a brain San Francisco, California confusing and frightening. tumor diagnosis, tumor types, treatment options, and Every question you ask and decision you make is im- survival tips. You will also learn about conventional and portant in determining what’s best for you. That’s why integrative treatments, symptom management and the The Essential Guide to Brain Tumors has been designed latest research about potential causes. The Essential to educate you, answer your questions, guide you Guide offers information for caregivers and references through the treatment process and life after treatment, to organizations that can provide additional information. and encourage the participation and support of your Throughout the Essential Guide you will find personal friends and family. This Essential Guide is an informative experiences and helpful recommendations from brain tumor survivors.

What is a brain tumor? Facts About Brain Tumors A brain tumor is a mass of cells that have Acknowledgements • Each year over 190,000 people in the United States grown and multiplied uncontrollably. Primary and 10,000 people in Canada are diagnosed with a Copyright © 2004, 2005, 2007, 2009, 2010 brain tumors originate in the brain and rarely Professional Contributor • Mary Lovely, RN, PhD primary or metastatic brain tumor. spread to other parts of the body. Metastatic Writer • Radha McLean National Brain Tumor Society Patient Services 800 934 2873 (or secondary) brain tumors come from cancer • Brain tumors are the second leading cause of Editor • Edythe Vassall Toll free 800 770 8287 cells in another part of the body. The diseased cancer-related deaths among children ages 0-19. An Design • e.g. communications www.braintumor.org cells spread to the brain by moving through the estimated 4,030 children under the age of 20 will be Cover Design • National Brain Tumor Society All rights reserved. bloodstream. This process is called metastasis. diagnosed with primary brain tumor in 2010. 1

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• Brain tumors are the second leading cause of • Because brain tumors are located at the control cancer-related deaths in young men up to age center for thought, emotion and movement, their 1. Understanding the Brain 39, and the fifth leading cause of cancer-related effects can be devastating. deaths among young women, ages 20-39.2 • At present, standard treatments for brain tumors • Metastatic brain tumors (cancer that has spread include surgery, radiation therapy, and chemo­ The first step in understanding brain tumors is learning all you can about from other parts of the body) occur in an therapy, used either individually or in combination. the brain: its structure and the role each part of the brain plays in our estimated 20 to 40 percent of people with cancer • Brain tumors in children are different from those and are the most common type of brain tumor.3 in adults and are often treated differently. Although everyday thoughts and behaviors. Then you will better understand how • In the United States, the overall incidence of all as many as 72 percent of children will survive, they different kinds of brain tumors can cause the associated symptoms. primary brain and central nervous system tumors are often left with long-term side effects.5 (CNS) is 18.71 per 100,000 persons per year.4 • Enhancing the quality of life of people with brain The CNS uses billions of nerve cells, nerve fibers and • There are over 120 different types of brain tumors, tumors requires access to quality specialty care, The Central Nervous System supportive cells to relay messages to the rest of our making effective treatment very complicated. clinical trials, follow-up care, and rehabilitative The essential components of the central nervous system body. The CNS is different from the peripheral nervous services. Improving the outlook for adults and (CNS) are the brain and spinal cord. • Brain tumors can be malignant or benign, and in system (PNS). The PNS is made up of nerves that children with brain tumors requires research into either case can be life threatening. connect the CNS to the sensory organs, muscles, blood the causes of and better treatments for brain Brain vessels, and glands. tumors. The brain is a soft, spongy mass of nerve cells and supportive tissue connected to the spinal cord. The The brain and spinal cord are protected by the skull, the brain of an adult weighs approximately three pounds. In spinal column, and the meninges. the center of the brain are four connected hollow spaces called ventricles. The ventricles contain a liquid called Skull cerebrospinal fluid (CSF) that circulates throughout the The skull is a framework of eight cranial and 14 facial CNS. The brain controls our five senses in addition to bones that protect the brain from being damaged. The our emotions, thoughts, speech, physical coordination, cranium, the part of the skull that covers the brain, is movement, and sensation. made up of four major bones: the frontal, occipital, sphenoid, and ethmoid bones. There are four other Spinal Cord bones in the cranium: two temporal bones, which are The spinal cord is a long, cylin­drical mass of nerves located on the sides and base of the skull, and two that extends from the brain stem down the length of parietal bones, which fuse at the top of the skull. The the spine. The spinal cord controls movement and areas where the bones in the skull meet are called sensation. suture lines.

Spinal Column The spinal column is composed of 33 irregular, spool shaped bones called vertebrae that are stacked one on top of the other. The spinal column is divided into five sections that extend from the base of the skull to the tailbone: the cervical, thoracic, lumbar, sacral and coccygeal. The spinal column protects the spinal cord.

Three membranes, or layers of tissue called meninges, surround the brain and spinal cord.

1CBTRUS. Statistical Report: Primary Brain and Central Nervous System 3Soffietti R, Ruda R, Mutani R. Management of Brain Metastases. Tumors Diagnosed in the United States in 2004-2006. Central Brain October 2002. Vol. 249, No. 10. Journal of Neurology. Steinkopff. Pages Meninges Tumor Registry of the United States, Hinsdale, IL, 2010. 1432-59. There are three membranes called meninges that cover 2Jemal A, Siegel R, Xu J, et al. Cancer Statistics, 2010. CA: A Cancer 4 & 5 CBTRUS, 2010 the brain and the spinal cord. The outermost layer, the Journal for Clinicians. American Cancer Society. Published online, July

2010. Courtesy National Cancer Institute, Bethesda, MD dura mater, is a thick membrane. The second layer,

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called the arachnoid, and the third layer, called the pia between the brain and various parts of the body. mater, are thin membranes. Cross-Section of Brain The cerebrum also houses many internal nerve struc- There are three spaces between the layers of the tures, such as the thalamus, hypothalamus and pituitary meninges. The space between the skull and dura mater gland. These structures are responsible for processing is called the epidural space. The space between the different messages being sent to the brain and for send- dura mater and the arachnoid is called the subdural ing messages from the brain to other parts of the body. space. The space between the arachnoid and the pia mater is called the subarachnoid space. Frontal Lobes The frontal lobes make up the front portion of the Ventricles cerebral hemisphere. The frontal lobes control many The ventricles are four connected, fluid-filled cavities of the brain’s activities including attention, abstract located in the center of the brain. The ventricles contain thought, problem solving, reasoning, judgment, initiative, the choroid plexus, structures that produce cerebrospi- inhibition, memory, parts of speech, moods, major body nal fluid. movements, and bowel and bladder control.

Illustration: Laurel V. Schaubert Courtesy of: Charles B. Wilson, MD Cerebrospinal Fluid (CSF) Parietal Lobes Cerebrospinal fluid is a clear liquid that surrounds the The parietal lobes are in the upper central portion of brain and spinal cord. It cushions and protects them the cerebral hemispheres. The parietal lobes process all against injury. CSF circulates through the four ventricles The Internal Nerve Structures of the Brain effect, controls the amount of water in the body. messages being sent to and from the brain regarding and the subarachnoid space. The CNS has a closed physical sensations. The parietal lobes are responsible Thalamus Brain Stem cir­culatory system that drains into the bloodstream. for interpreting the meaning of physical sensations to The thalamus is a pair of egg-shaped masses of gray The brain stem, located at the base of the brain, determine such factors as size, shape, weight, texture matter located in the center of the two hemispheres, includes three parts: midbrain, pons, and medulla The Sections of the Brain and consistency. They interpret spatial orientation and above the hypothal­amus. The thalamus acts as a path- oblongata. The brain stem contains the 12 cranial how we are aware of the parts of our own body. The way for most of the messages that pass to and from the nerves, which control hearing, vision, sense of smell, The brain is divided into sections, each of which parietal lobes also help us to make calculations, read brain. It also is involved in our conscious awareness of and balance. The brain stem also contains pathways controls a distinct aspect of human movement and and write. pain, focusing of attention, certain aspects of speech/ going from the spinal cord to the brain for messages be­havior. A brain tumor can affect function (movement language, memory, motor and sensory functions, and related to movement and the senses. In addition, the and/or behavior) depending on where in the brain the Temporal Lobes the sleep/wake cycle. brain stem controls involuntary functions, including tumor is located (see Brain Structures and Their Func- The temporal lobes form the lower portion of the breathing and heartbeat and our sleep/wake cycle. All tions, page 9). cerebral hemispheres. The temporal lobes manage Hypothalamus functions controlled by the cerebrum pass through the most auditory activities in the brain by translating words The hypothalamus, located in the center of the brain, brain stem. Cerebrum into meaning. There is also a small, important section regulates automatic body activity such as heart rate, The cerebrum is the largest area of the brain. It has of the temporal lobe that controls the brain’s ability to temperature, thirst, appetite, sleeping patterns, growth Cerebellum two sections called the right and left hemispheres. The form long-term memory patterns. The left temporal hormone, and physical expressions of emotions such as The cerebellum, located behind the brain stem, has right cerebral hemisphere typically controls the left lobe controls language comprehension in most people. blushing, dry mouth, and sweating. many connections to the brain and the spinal cord. side of the body, whereas the left cerebral hemisphere For this reason, the left temporal lobe is considered the The cerebellum is responsible for coordinating muscle controls the right side of the body. Each hemisphere dominant lobe. Pituitary Gland groups and controlling small movements and balance. is further divided into four sections called lobes: the The pituitary gland, also called the hypophysis, is found frontal, parietal, temporal and occipital lobes. Each lobe Corpus Callosum Occipital Lobes at the part of the brain between and behind the eyes. It controls different behaviors and sections of the body. The corpus callosum connects the left side of the brain The occipital lobes are in the back portion of the cere- is connected to the hypothalamus. The hypothalamus to the right side of the brain. It is located in the center of The outer layer of the brain is called the cortex. It is bral hemispheres. The occipital lobes control vision. The transmits messages to the pituitary gland, telling it the brain, surrounded by the cerebrum. made up of bodies of nerve cells known as gray matter. right occipital lobe processes what is seen out of the left to secrete the hormones that regulate growth, blood Much of the brain’s activities occur in the gray matter. field of vision, and the left occipital lobe processes what pressure, the thyroid, and gender-related functions (i.e. To learn more about the parts of the brain, visit The internal layers of the cerebrum are made up of is seen out of the right field of vision. testosterone secretion, menstruation, and lactation). The www.braintumor.org. nerve fibers called axons or white matter. The white pituitary gland also produces a hormone that controls matter contains nerve fibers that allow communication the rate that water is secreted into the urine. This, in

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• Reflexes than normal, healthy tissue. The contrast agent allows the doctor to see the difference between normal and 2. Diagnosing a Brain Tumor • Balance and coordination abnormal brain tissue. • Long- and short-term memory Types of Imaging Techniques A brain tumor takes up space within the skull and interferes with normal • Judgment and reasoning Thanks to modern technology, several types of imaging brain activity. A tumor can cause damage by increasing pressure in the • Muscle strength scans are available to help diagnose brain tumors. Each type of scan is effective in capturing a different part and • Motor skills brain, shifting the brain or pushing against the skull, and invading and function of the brain. The patient may have more than • Gait damaging nerves and healthy brain tissue. The location of a brain tumor one scan or different kinds of scans depending on the • Sensation type and location of the tumor. influences the type of symptoms that occur. This is because different • Language The most commonly used scan for detecting brain tumors is magnetic resonance imaging (MRI). There are functions are controlled by different parts of the brain. • Calculation two types of MRI scanning equipment: standard and If responses to the exam are not normal, the doctor may open. Brain Tumor Symptoms Neurological Examination order a brain scan or refer the patient to a neurologist or neurosurgeon, who will then order a scan. Magnetic Resonance Imaging (MRI) A brain tumor can block the flow of cerebrospinal fluid A neurological examination tests a person’s physical An MRI is the standard imaging technique for suspected (CSF) between the ventricles, causing a buildup of CSF and mental functions. The doctor will begin by taking a brain tumors. An MRI is a scanning device that uses and swelling, called brain edema. Edema can lead to medical history and asking questions about: Scans and Imaging Techniques magnetic fields and computers to capture images of the symptoms including headaches, seizures, or focal • How the patient feels at the present time A scan is a picture of the internal structures in the brain on film. It does not use x-rays. It provides pictures deficits. Focal deficits include damage to sensory or brain. A specialized machine takes a scan in much the from various planes, which permits doctors to create a movement abilities, problems in the ability to process • When the patient first noticed symptoms same way a digital camera takes a photograph. Using three-dimensional image of the tumor. The MRI detects information, person­ality changes, and speech disorders. • How often the symptoms occur computer technology, a scan compiles an image of the signals emitted from normal and abnormal tissue, A tumor of the spinal cord can block the communication brain by photographing it from various angles. providing clear images of most tumors. between the brain and nerves through­out the body. • Whether the symptoms are worsening Some types of scans use a contrast agent (or contrast To prepare for a standard MRI scan, the patient will be This can lead to problems with movement or physical • The intensity and location of headaches sensation. dye), or a ferromagnetic substance such as gadolinium. asked to lie down on a long table, which slides through • Personality changes This is injected into a vein and flows into brain tissue. a long, cylindrical tube with a narrow opening. Although The most common symptoms include: • Changes in sense of touch, taste, smell, vision, or Abnormal or diseased brain tissue absorbs more dye there is enough room for the patient’s body inside the • Headaches, which can be most severe in the hearing morning • What procedures or tests have already been • Seizures or convulsions Brain Structures and performed Parietal lobe • Difficulty thinking, speaking, or finding words Their Functions • telling right from left • What treatments or interventions have been • calculations • Personality changes prescribed • sensations • reading Frontal lobe • writing • Weakness or paralysis in one part or one side of After asking questions to de­termine these conditions, • movement • initiative • reasoning • inhibition the body the doctor will conduct a series of tests to measure the Occipital lobe • behavior • mood • vision • Loss of balance function of the patient’s nervous system, and physical • memory • personality and mental alertness. This part of the exam includes • planning • Vision changes checking the following functions: • decision making Temporal lobe Cerebellum • judgment • language comprehension • balance • Nausea or vomiting • behavior • coordination • Eye movement and pupil reaction • memory • fine muscle control • Confusion and disorientation • hearing Pituitary gland Brain stem • Hearing • emotions • hormones • breathing The doctor will perform a physical exam to detect the • growth • blood pressure • Smell • fertility • heartbeat signs and symptoms associated with a brain tumor. • swallowing This exam is called a neurological examination. • Tongue movement and sensation

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cylinder, the patient will not be able to move around. speech, movement, and sensation. This information is The scan takes approximately 15–45 minutes. During “I concentrate on my family and all the wonderful important in planning surgery, radi­ation therapy, or other the scan, the patient will hear loud banging sounds, things we have been blessed with. I have come treatments. caused by the electronics within the machine. Patients to know the technicians in the MRI area quite Magnetic Resonance Spectroscopy may request earplugs to reduce noise. Some people well, and when I enter the room, they hand me (MRI Spect or MRS) feel claustrophobic during MRIs and ask for a sedative a plastic rosary. They know that’s all I need to Magnetic Resonance Spectroscopy is a type of MRI that beforehand to relax. Other people request an open MRI. make it through.” measures the levels of metabolites in the body. Metabo- An open MRI machine does not have a cylinder, so the –Glioblastoma survivor lites are chemicals produced by living cells. The activity patient is not enclosed. The procedure lasts approxi- of metabolites in tumors is different from that of normal mately 45 minutes. There is some discussion among tissue. An MRS can detect patterns of activity that may doctors concerning the quality of the images of an open There are several types of MRI scans. These techniques help diagnose the type of tumor and evaluate tumor MRI compared to the standard or closed MRI. aid doctors before and during surgery in various ways. response to therapies. The types of metabolites com- Brain tumor patients will usually have more than one monly measured with an MRS are choline, lactate, and Magnetic Resonance Angiography (MRA) MRI procedure during the course of treatment. Here N-Acetyl-Aspartate (NAA). An MRS may also be used Magnetic Resonance Angiography generates an image are some tips to help make the procedure more to determine the grade of a tumor and to distinguish Computed Tomography (CT or CAT Scan) of blood vessels and blood flow without the use of a comfortable: active recurrent tumor cells from dead cells destroyed Computed Tomography combines sophisticated x-ray contrast agent. It is less invasive than an arteriogram, by radiation treatment, called radiation necrosis. and computer technology. Unlike other medical imaging • Bring your favorite music CD a traditional blood-vessel exam that requires injecting techniques, CT has the ability to show a combination of a contrast agent. MRA is used to find the presence Other types of imaging techniques may also be used to • Wear pants that have a comfortable, loose waist soft tissue, bone, and blood vessels. CT is effective at ex- and position of the blood vessels leading to the tumor help diagnose and treat brain tumors. amining bone and tissue calcification and hemorrhage. • Wear short sleeves if you will be receiving a and determine whether or not these vessels have been Perfusion MRI CT images can determine some types of tumors, as well contrast agent injection displaced due to the tumor mass. This method is Perfusion MRI uses contrast agents to examine the flow as help detect swelling and bleeding. Usually, iodine is • Cover your eyes with a towel normally used before surgery to remove a tumor with of blood into the tissues. In some institutions, perfusion the contrast agent used during a CT scan. Patients who a large supply of blood, or one that is in an area of the MRI is used to grade certain types of tumors. are allergic to iodine should inform their doctor before brain that has a large number of blood vessels. having a CT scan. What is the difference between a neurologist Diffusion and Diffusion-Tensor MRI and a neurosurgeon? Contrast-Enhanced MRA (CE-MRA) In preparation for a CT scan, the patient lies on a long These forms of MRI measure the diffusion (random mo- Contrast-Enhanced MRA is a form of MRA that uses table that slides into a round opening above his or her A neurologist is a medical doctor who specializes tion) of water in the tissues. Since the diffusion of water contrast agents to look at the movement of blood head. The CT circles around the patient’s head, taking in diagnosing and treating illnesses in the brain along the nerve can be measured with this technique, it through the region of interest. pictures of the brain from different directions. The and spine. A neurosurgeon is a medical doctor can be used in surgical planning to avoid injuring nerve who performs surgery on the brain and spine. scan makes a slight clicking sound as it moves. The Flow Sensitive MRI (FS MRI) bundles (ganglia) that have been shifted or displaced. information gathered is then sent to a computer, which Flow Sensitive MRI shows the flow of CSF through the What is a contrast agent? translates it into pictures. ventricles and spinal cord. It is used when examining A contrast agent or contrast dye is a substance  tumors in the spinal cord and at the base of the skull. It CT is a valuable diagnostic tool and its use has been used to help detect a tumor by highlighting can also be helpful when removing tumors that cause increasing rapidly. However, CT scans involve exposure abnormal tissue in a scan. An MRI may not be an option for hy­drocephalus. Hydrocephalus is a condition marked to ionizing radiation. This is a concern for people who by blockage of CSF pathways, leading to a buildup of certain patients because the intense have multiple CT scans and for children, because they What is the difference between invasive and CSF in the skull. are more sensitive to radiation than adults. It is wise non-invasive procedures? magnetic fields can damage some for patients who have had frequent x-ray exams and An invasive procedure involves a puncture or Functional MRI (fMRI) types of implanted medical devices. parents of children who have brain tumors to keep a incision of the skin, or insertion of an instrument Functional MRI provides instant images of brain activity record of their x-ray history. If a patient changes health Patients should advise the doctor or foreign material, such as a contrast dye, into by tracking the use of oxygen in the brain as it occurs. care providers, this information can help doctors make the body. A non-invasive pro­cedure means that fMRI identifies the motor, sensory, and language if they have a pacemaker, cardiac informed decisions. Hospitals typically reduce the there is no puncture of the skin or insertion of centers of the brain, called the eloquent cortex. fMRI dose of radiation given to children from adult levels to monitor, surgical clip, or facial tattoos. foreign material into the body. can help radiologists determine precisely which part of levels based on the weight of the child. This minimizes the brain is handling critical functions such as thought, radiation over-exposure.

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Positron Emission Tomography (PET) Pathology Report Brain tumors grow because their cells divide to make Positron Emission Tomography is a supplementary test Important Points About A pathology report contains the analysis of brain tissue more cells. The process of cell division is called that can be used to gain additional information after an Diagnostic Tests taken at the time of a craniotomy or needle biopsy. It proliferation. The per­centage of cells that are actively MRI. PET scans provide a picture of the brain’s activity, provides the information to make a diagnosis of the dividing within the tumor are measured by a test called • Some people may have an allergic reaction to rather than its structure, by measuring the rate at which tumor type. Sometimes the pathologist may not be the MIB-1 labeling index. If no cells are actively dividing, iodine, the contrast agent most commonly used a tumor absorbs glucose (a sugar). To do this, the pa- able to make an exact diagnosis. This may be because the MIB-1 labeling index (LI) would be expected to be 0 for CT scanning. Allergic reactions can tient is injected with glucose that has been labeled with more than one grade of tumor cells exists within the percent. An MIB-1 LI of greater than 30 percent indi- include rashes, a warm sensation, or in rare radioactive markers. Then the PET scan measures the same tumor. If cells of only one grade are removed and cates that tumor cells are growing very rapidly. Several cases, difficulty breathing. If you know you are brain’s activity and sends this information to a computer, classified during a biopsy, it is possible that the tumor studies have shown that gliomas with an MIB-1 LI of 10 allergic to iodine, tell your doctor. which creates a live image. Doctors use PET scans to grade will be misdiagnosed. This is called a sampling percent or less have a more favorable prognosis than see the difference between scar tissue, recurring tumor • Gadolinium, the contrast agent used with an MRI, error. In some cases, the tissue may be sent to another those higher than 10 percent. cells, and cells destroyed by radiation treatment. PET may cause temporary headaches but has no institution for additional input. is also used during brain mapping procedures (see other known side effects. chapter 5). PET requires using highly complex, expensive • Because an MRI uses magnetic fields, people equipment and can produce results that are difficult to who have metal implanted in their body in any interpret. At this time, PET is not widely used to evaluate form (including tattoos) should let the doctor recurrence of a brain tumor. know about it before scheduling the procedure.

Angiography • Medication can be given to help relieve the Angiography is a common technique used to outline symptoms of anxiety or claustrophobia when the position of blood vessels in the brain. A catheter having an MRI. Patients should let the doctor is placed in the groin and fed up to carotid or vertebral know their concerns before scheduling an MRI. arteries in the brain. A contrast dye is injected into the catheter, and x-rays follow its path through the blood vessels of the brain. Closed Biopsy A closed biopsy (also called stereo­tactic or needle Biopsy biopsy) is performed when the surgeon wants to avoid removing healthy tissue from the area surrounding Often used in combination with a scan of the brain, the tumor, or when the tumor is in an area of the brain biopsies are the most accurate test for identifying that is difficult to reach. The patient may be given a local the type and grade of a tumor. A biopsy is a surgical anesthetic to numb the skin and a sedative medication procedure in which a small sample of tissue is taken and remain awake during the procedure. Or, the patient from the tumor site and examined under a microscope. may undergo a general anesthesia, where he or she will The biopsy provides information on types of abnormal be unconscious during the procedure. Guided by a CT cells present in the tumor. The results help the doctor or MRI that is performed prior to the procedure, the diagnose the type of tumor. surgeon drills a small hole into the skull and passes a narrow, hol­low needle through the hole into the tumor Should a person consider getting a second opinion after receiving an initial diagnosis? There are two kinds of biopsy procedures: an open and to remove a sample of tissue. Yes. A patient can get a second opinion to confirm the initial diagnosis and to compare the suggested courses a closed biopsy. of treatment. Some insurance companies require that a patient get a second opinion before undergoing major Once a sample is obtained, a pathologist will examine therapy. A second opinion should be obtained as soon as possible to avoid delaying treatment. Patients can ask Open Biopsy the tissue under a microscope. Further tests or analysis their family physician to recommend other doctors. Patients may also call the National Brain Tumor Society An open biopsy is done during a craniotomy. A crani- may be performed on the tumor tissue. Then the to learn more about how to get a second opinion. NBTS has a range of services available to patients and otomy is a surgical procedure that involves removing pathologist will write a pathology report. a piece of the skull in order to get access to the brain. caregivers. We can provide a list of treatment facilities around the country, offer help and information, or After the tumor is debulked or resected, the bone make referrals to other helpful organizations. We can be reached by phone at 800 934 2873 or at is usually put back into place. The patient is under www.braintumor.org. anesthesia during this procedure.

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mental hazards are suspected, although no major risk Figure 1 3. Known and Possible Causes factors have been clearly identified. Another cause may have been a change in brain tumor Each year over 190,000 people in the United States and 10,000 people classification in the mid 1980s. Some gliomas previ- ously considered benign were changed to the status in Canada are diagnosed with a primary or metastatic (secondary) brain of malignant. This may have led to an increase in the number of brain tumors being registered. (Previous to tumor. Many studies are looking into the causes of brain tumors, but the the year 2002, benign brain tumors were not counted in cancer registries. The Benign Brain Tumor Cancer results have not been conclusive. Although the causes of brain tumors are Registries Amendment, passed in 2002, now mandates not certain, there are many trends among people who get them. that cancer registries record all brain tumors regard- less of their type.)

These trends include age, gender, geography, environ- different tumor types (see figure 1, page 15). Geography and Ethnicity mental influences, and behavioral patterns. Trends may Rates for neuroepi­thelial tumors (gliomas) are almost There is a lot of variation in the trends of brain tumor provide some insight into the possible causes of brain 1.3 times greater in males than females. Glioblastomas, patients along geographic and ethnic lines. Access to tumors. This chapter will provide an overview of trends Many brain tumors can be removed. Others can be kept lymphomas, and germ cell tumors are more common in health care is one influential factor. Reported rates for found in studies of brain tumor patients. under control for many years with treatment. Some males than in females. In contrast, meningiomas affect primary malignant brain tumors tend to be higher in brain tumor survivors don’t experience recurrence more than twice as many females as males. The find- countries with more accessible and highly developed while others do. For this reason, most brain tumors Incidence Rates ings of one study suggest that female hormones may medical care, such as Northern Europe and the United need to be monitored by periodic scans throughout the have a protective effect against certain types of brain According to the Central Brain Tumor Registry of the States. Countries such as India and the Philippines have survivor’s lifetime. The frequency of scans decreases as tumors. More investigation is nec­es­sary to account United States (CBTRUS), 62,930 primary, benign and the lowest reported rates. This would seem to indicate time goes by. for gender differences. Tumors in cranial and spinal malignant tumors of the brain and central nervous that the difference is due to better diagnosis and report- nerves and in the sellar region of the brain (the area just Survival is strongly related to a person’s age and tumor system (CNS) are expected to be diagnosed in 2010. ing in more developed countries. behind the eyes) occur equally in males and females. type. On average, about 35 percent of people diagnosed About 18.71 per 100,000 persons per year in the U.S. However, there is some evidence that cultural, ethnic, or with a malignant brain tumor in the U.S. will survive are diagnosed with a primary brain tumor each year, Incidence and Mortality geographic differences do play a role in the disease. for five years. However, the five-year survival rate in and of those, about 7 per 100,000 are diagnosed with According to the American Cancer Society, primary The incidence rate for malignant brain tumors in children under age 20 with brain and other nervous a primary malignant brain tumor. The incidence rate of brain tumors are among the top ten causes of cancer- Japan is less than half that in Northern Europe. In the system cancers is about 72 percent, much higher than primary tumors of children between ages 0 to 19 years related deaths in the United States among women, and US, gliomas affect more whites than blacks, but the average. People with glioblastoma consistently have the is approximately 5 cases per 100,000. Meningiomas the eleventh among men. Brain tumors are the second incidence of meningioma is nearly equal among blacks poorest survival in all age groups. For all people with and gliomas are the most frequent types of primary most common malignancy among children, involving and whites. These differences cannot be attributed only meningiomas (including benign, atypical, and malig- and other nervous system tumors, making up 34% and about one out of five, or 20 percent of pediatric cancer to differences in access to health care or in diagnostic nant), the five-year survival rate is 69 percent, but it is 32%, respectively. cases. practices. These and other findings suggest that further slightly lower for people with malignant meningiomas research about genetic differences needs to be done to (55 percent). There was an increase in the incidence of primary explain variations in brain tumor incidence rates among Brain Tumor Trends malignant brain tumors in the 1980s and 1990s, Survival rates are strongly related to several factors. different ethnic groups. particularly among children and the elderly. Several These factors include: Age and Gender explanations have been offered to account for this. They Survival and Prognosis The average age that an adult is diagnosed with a • Age. Among all brain tumor patients, children from include better diagnostic methods using CT scans and When diagnosed with a brain tumor, one of the first brain tumor is 57 years. The age and number of five to 20 years of age and young adults from 20 MRIs, a greater availability of neurosurgeons, longer things a patient usually wants to know is “How long children diagnosed with brain tumors is distributed to 44 years of age have higher survival rates than life expectancy, and improvements in medical treat- will I live?” The answer is never certain, and we encour- evenly between the ages of 0 and 19. Trends in age children under five and adults aged 45 or older. ments for elderly patients. Many researchers suggest age patients and families not to focus on statistics. vary depending on the type and location of the tumor. some of the increase, particularly in pediatric brain No individual is a statistic; each person’s prognosis is • Tumor type. Brain tumors that grow slowly have a This suggests that many different factors influence the tumors, may be due to other, unknown causes. Environ- different. better prognosis than fast-growing tumors. Tumor progression from benign to malignant negatively

* These figures do not include metastatic brain tumors, which are the most common type of brain tumor. affects survival.

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• Location. This determines the type of symptoms carcinogens, or repairing damaged DNA. When exposed shingles) may play a role in preventing brain tumors. There has been compelling evidence that workers in the a person may have, whether or not the tumor can to toxic agents in the environment, they may more easily More study is needed. production of synthetic rubber and polyvinyl chloride, be surgically removed, and how much of it can be develop cancer. It seems likely that the majority of brain and workers in certain parts of the petrochemical, removed. tumors are linked to interactions between genes and tox- Head Injuries and Seizures petroleum, and oil industries are at greater risk for ins in the environment, because such a small percentage Serious head trauma has long been suspected as a developing brain tumors. However, studies are contra- • Treatment. Differences in the type of treatment of brain tumors are linked to heredity. cause of brain tumors. In fact, studies show a positive dictory and inconclusive. Increased risk was not found and the patient’s response to it also affect survival. correlation between head trauma and meningioma, but in adults who work in manufacturing of pesticides or At present, brain tumors are treated by surgery, Molecular studies have found deletions (missing parts) a negative link to glioma. A history of seizures has been fertilizers. However, four out of five studies of pesticide radiation therapy and chemotherapy, used either or mu­tations (defects) of crucial genes that control the consistently associated with brain tumors, but since applicators have shown there is an increased risk for individually or in combination. cell cycle. These are suspected to play a role in forming brain tumors are known to cause seizures, it is unclear if these professionals. brain tumors. Many patterns of deletions and mutations • Functional status. People who are more functional seizures and/or seizure medication can increase tumor have been identified in some tumor types. There is still at time of diagnosis do better than those who are risk. As for drugs and med­i­ca­tions, there have been few It is possible that parents exposed to carcinogens in the much work to be done to systematically identify the more disabled. The Karnofsky Performance Scale studies of any links to adult brain tumors. workplace might possibly increase the risk of cancer molecular alterations in primary brain tumors and to (KPS) is a means of rating the patient’s overall in their children. A mother’s exposures might have a develop methods to treat them. functioning level. KPS scores range from 100 to Diet direct impact on the developing fetus, and a father’s In animal studies, certain chemical substances known 0, where 100 represents normal functioning and 0 Ionizing Radiation exposures before conception might damage his DNA. indicates the end of life. as N-nitroso compounds have been clearly identified Higher risks of pediatric brain tumors were reported for Treatment of disease with therapeutic ionizing radiation as carcinogenic (causing cancer) to the nervous system. fathers working with, or working in industries involving: (including x-rays) is a strong risk factor for brain tumors. N-nitroso compounds are present in cured meats paper and pulp, solvents, painting, printing and graphic Known and Possible Causes Relatively low doses of radiation used to treat tinea (nitrites), cigarette smoke, cosmetics, and many other arts, oil or chemical refining, farming, metallurgy, and capitis (ringworm) and skin hemangioma in children To date, the only proven causes of brain tumors are sources. These compounds are also produced inside air and space. One theory is that chemical carcinogens or infants have been associated with relative risks for rare hereditary syndromes, therapeutic ra­diation, and the human body as the digestive process breaks down from the workplace might remain on a parent’s skin nerve sheath tumors, meningioma, and glioma. One immunosuppression that gives rise to brain lymphomas. food (including vegetables) and drugs. Given the great or clothing. When the parent goes home, his or her study showed a high rate of prior therapeutic irradiation Yet these causes account for only a small percentage amount of exposure to these compounds and the variety children might then be exposed to the carcinogens. among patients with glioblastoma. Another reported of cases. Although a lot of research has been done on of sources, it is extremely difficult to determine any However, there is no conclusive proof of this. an increased risk of glioma or other brain tumors the potential risk factors for primary brain tumors, most individual’s lifetime exposure. in patients who had undergone irradiation for acute Studies of chemical exposures in the home have of the findings are uncertain. There is little agreement lymphoblastic leukemia as children. Second primary Some studies of diet and vitamin supplementation seem focused on the role of pre- and postnatal pesticide ex- about the nature and extent of the risk factors. It is dif- brain tumors also occur more frequently than expected to indicate that dietary N-nitroso compounds might posures in pediatric brain tumors. A recent large study ficult to measure amounts of exposure to suspected risk especially among patients treated with radiation therapy. influence the risk of both pediatric and adult brain found increased risk in children exposed before birth factors and to define latency periods (the amount of tumors. Researchers have observed in some studies to flea and tick pesticides. The authors of the study time it takes for a brain tumor to develop after exposure Exposure to Infections, Viruses, and Allergens that brain tumor patients (or their mothers) have have urged further investigation of pesticide exposures to a risk factor). The large number of different tumor Several types of viruses have been shown to cause generally consumed more cured foods than control during pregnancy. types (more than 120) is another obstacle. However, brain tumors in experimental animal studies. Since it groups. Avoiding cured food and eating more fruits and studies have examined and continue to examine many is so difficult to design meaningful studies on humans, vegetables that are high in anti­oxidant vitamins may Cellular Telephones and Radio Frequency (RF) factors that may cause brain tumors. Here are some of the topic has received little attention. There have been lessen the risk of developing cancer. Electromagnetic Fields the findings: findings which raise the possibility that certain allergies With the expansion of wireless communication technolo- and common infections (including chicken pox and gies, radio frequency (RF) exposure is an important Hereditary and Genetic Influences Chemicals in the Workplace and the Home concern. It is important not to confuse RF fields with Some hereditary syndromes, such as tuberous sclerosis, Some workers are exposed to carcinogenic or toxic ionizing radiation, such as x-rays or gamma rays. Unlike von Hippel-Lindau syndrome and neuro­fibroma­tosis “Doctors may prescribe a regimen that may be substances in the workplace. Researchers have at- ionizing ra­diation, RF fields cannot cause ionization or types 1 and 2, are associated with a higher risk of de- effective, but they don’t prescribe hope. I repeat: tempted to pinpoint links to brain tumors, but gather- radioactivity in the body. Because of this, RF fields are veloping brain tumors. Yet “genetic predisposition,” as it it’s not science that has made a quantum leap ing evidence is difficult. Workers are rarely exposed to called non-ionizing. is called, probably accounts for less than five percent of in brain tumor survival, it’s the brain tumor one single chemical, and certain chemicals probably brain tumors. Other people may have what researchers patients themselves. They have become interact with others to increase or decrease risk. There- Concern over possible health effects of using cellular call a “genetic suscep­tibility” for developing cancer. empowered.” fore, researchers have been unable to make any definite telephones has prompted studies looking at the relation Genetic susceptibility means their bodies may not be –Neuro-oncologist links between brain tumors and specific chemicals, even between cell phone usage and an increased risk of as efficient at processing certain substances, removing those known to be carcinogenic. brain tumors. The results of several studies, including

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a recent large multinational study, suggest that there person suscep­tible or resistant to developing a brain Information for this chapter was adapted from the The INTERPHONE Study Group. Brain tumour risk in is no association. However, it may be important to tumor. Developing new technologies, improving tech- article “Epidemi­ology of Primary Brain Tumors: Current relation to mobile telephone use: results of the INTER- continue research in this area because cell phone usage niques for classification, using molecular markers more Concepts and Review of the Literature,” published in PHONE international case-control study. May 2010. Vol. is becoming increasingly common. Many studies were often, and keeping better records of the diagnoses and Neuro-­Oncology, Volume 4, Issue 4, October 2002. The 39, No. 3. International Journal of Epidemiology. Pages conducted during a time when analog phones were the prognoses of primary brain tumors are all factors that article was written by the following researchers, and we 675 - 694 main type of cell phone, as compared to digital phones will help us come to a better understanding of brain are very grateful for their assistance: Jemal A, Siegel R, Xu J, et al. Cancer Statistics, 2010. today. Total amount of phone use was lower, and the tumors and their causes. This knowledge could lead to Mitchel S. Berger, MD, Department of Neurological CA: A Cancer Journal for Clinicians. American Cancer number of cell phone users was fewer then. Moreover, strategies for preventing brain tumors, determining who Surgery and Brain Tumor Research Center, University of Society. Published online, July 2010. long-term studies are probably needed because some might be sensitive to radiation therapy or certain drug California, San Francisco, San Francisco, California brain tumors may take a long time to develop. treatments, and improving the survival rate of people di- agnosed with malignant tumors. Clinical trials, research Melissa Bondy, PhD, Department of Epidemiology, The World Health Organization (WHO) suggests that studies that involve people, are important means to The University of Texas M. D. Anderson Cancer Center, individuals who are concerned about potential dangers search for answers to these types of questions. University of Texas, Houston, Texas of cell phone use may choose to do the following: limit their own or their children’s RF exposure by limiting the Further studies are needed to explain gender and Terri Chew, MPH, Department of Epidemiology and Bio- length of calls, or use hands-free devices (headsets) to ethnic dif­ferences found among people diagnosed statistics and Brain Tumor Research Center, University keep mobile phones away from the head and body. with gliomas and menin­giomas. Studies are needed to of California, San Francisco, San Francisco, California find out why environmental factors and changes to DNA Air Pollution might increase vulnerability to brain tumors, and to Yuriko Minn, MS, Department of Neurology, Stanford Certain toxic air pollutants are known to cause cancer help us understand the way that brain tumors develop. University, Stanford, California in humans. Ultra fine particles, including diesel soot and There is hope that further research can lead to preven- Margaret Wrensch, PhD, Department of Epidemiology other combustion products, are able to lodge deep tion and a cure. and Biostatistics and Brain Tumor Research Center, in human lungs and even enter the bloodstream due University of California, San Francisco, San Francisco, to their microscopic size. One study is investigating a California possible link between brain tumors and air pollution. This current edition incorporates updates from the Direction for Future Studies following sources:

There is a growing interest in understanding the causes Altekruse SF, Kosary CL, Krapcho M, et al., eds. of brain tumors. Progress in molecular research may SEER Cancer Statistics Review, 1975-2007, National lead to identifying new types of tumors. Advances Cancer Institute. Bethesda, MD, http://seer.cancer.gov/ in genetic research may shed light on what makes a csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010.

Bondy ML, Scheurer ME, Malmer B, et al. Brain Tumor What causes cells to become tumors? Epidemiology: Consensus from the Brain Tumor Scientists believe that primary brain tumors Epidemiology Consortium. October 2008. Vol. 113, develop when changes to the genetic makeup of No. 7 Suppl. Cancer. American Cancer Society. Pages cells allow abnormal cells to escape destruction 1953-68. by the immune system. Researchers also suspect CBTRUS. Statistical Report: Primary Brain and Central that carcinogens, or poisons, may damage DNA Nervous System Tumors Diagnosed in the United States in brain cells, leading to brain tumors. Studying in 2004-2006. Central Brain Tumor Registry of the how alterations in cell development occur will United States, Hinsdale, IL, 2010. help to understand the causes of brain tumors and to identify similarities between different types of brain tumors.

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4. Brain Tumor Types Primary Brain Tumors Primary brain tumors originate in the brain itself. Primary brain tumors usually do not spread from the brain to other parts of the body. However, there are some exceptions to this rule. To determine the course of treatment, the type of brain tumor must first Primary brain tumors are classified into two groups: glial tumors, which are called gliomas, and non-glial tumors. be identified. This chapter discusses brain tumor types and how they are classified. Under each tumor type, you will find a list of the symptoms and treatment options that are typically prescribed. Many tumors share the GLIAL TUMORS same symptoms and treatments. Treatment is based on the tumor type and There are two types of cells that make up the nervous system: neurons and neuroglia. Neurons send and receive nerve messages. Neuroglia, otherwise known as glial cells, often surround the neurons. Glial cells play a supportive location. The three main treatment methods are surgery, radiation, and role by nourishing, protecting and supporting neurons. There are six kinds of glial cells: oligodendrocytes, astrocytes, chemotherapy. ependymal cells, Schwann cells, microglia, and satellite cells. A brain tumor that develops from glial cells is called a glioma. About one third of all primary brain and other nervous system tumors form from glial cells. Gliomas tend to grow in the cerebral hemispheres, but may also occur in the Classifying Brain Tumors by cell origin and how the cells behave, from the least brain stem, optic nerves, spinal cord, and cerebellum. aggressive (benign) to the most aggressive (malignant). There are over 120 different types of brain tumors. In Gliomas are divided into subgroups depending on the origin of the glial cells. The most common type of glioma is an Some tumor types are assigned a grade, which signi- most cases, a brain tumor is named for the cell type astrocytoma. fies the rate of growth. There are variations in grading of origin. Some brain tumors are named according to systems, depending on the tumor type. The classifica- their location. Today, most medical institutions use the tion and grade of an individual tumor help predict its Astrocytoma Characteristics World Health Organization (WHO) classification system likely behavior. An astrocytoma develops from star-shaped glial cells The characteristics of an astrocytoma vary depending to identify brain tumors. The WHO classification, which (astrocytes) that support nerve cells. These tumors can on the tumor’s grade and location. Most people are is used throughout this guide, classifies brain tumors Although they may fall into a specific classification or category, brain tumors are specific to each individual. be located anywhere in the brain, but the most common functioning normally when diagnosed with a low-grade Brain tumors have vastly different characteristics and location is in the frontal lobe. Astrocytomas are the most astrocytoma. Symptoms tend to be subtle and may patterns of growth due to the molecular makeup of common primary CNS tumor. take one to two years to diagnose. This is because the brain can often adapt to a slow-growing tumor for a Pediatric Brain Tumors the individual tumor. The physician, usually the neurosurgeon or neuro- period of time. High-grade tumors may present with Some tumor types are more common in children oncologist, will discuss the type and location of an A series of criteria are used to make a diagnosis. One changes that are sudden and dramatic. than in adults. The most common types of pedi- important criterion is anaplasia, the manner in which astrocytoma. The pathologist will assign it a grade. atric tumors are medulloblastomas, low-grade as- tumor cells grow with the loss of normal form or struc- Astrocytomas are generally classified as low or high Symptoms grade. Low-grade astrocytomas (grades I and II) are trocytomas, ependymomas, craniopharyngiomas, ture. The degree of anaplasia helps to forecast a tumor’s • Headaches and brain stem gliomas. Treatment for pediatric growth potential. The most rapidly growing tumors have slow growing. High-grade astrocytomas (grades III and • Seizures or convulsions brain tumors often involves surgery, radiation the highest degree of anaplasia. Tumor cells that show a IV) grow more quickly. The main tumor type is listed for • Difficulty thinking or speaking and/or chemotherapy. Age is an important factor lower degree of anaplasia are generally slow growing. each grade. There are additional tumor types in each of • Behavioral or cognitive changes (related to thinking, in determining the course of treatment since these grades. reasoning, and memory) In addition to other criteria, some tumors are now children’s brains are still developing. Survivors • Weakness or paralysis in one part or one side of the examined for their genetic traits to evaluate the nature The WHO classification divides astrocytomas into four of childhood tumors may experience late effects body of the tumor. For example, certain patterns of mutations grades (see following page for more detail): of treatment, such as developmental delays and • Loss of balance or chromosomal defects have been identified in certain • Grade I Pilocytic Astrocytoma learning or physical disability, and require regular • Vision changes tumor types. • Grade II Low-Grade Astrocytoma medical follow-up. Some children may require • Nausea or vomiting • Grade III Anaplastic Astrocytoma accommodations at school; the medical team For more information, or to connect with other • Grade IV Glioblastoma (or GBM) and education professionals can help to address patients, survivors and caregivers dealing with school-related concerns. similar tumor types, visit www.braintumor.org.

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ASTROCYTOMA GRADES BRAIN STEM GLIOMA Characteristics Symptoms can develop slowly and subtly and may go Pilocytic Astrocytoma (Grade I) • Named for its location at the base of the brain unnoticed for months. In other cases, the symptoms This tumor is also known as a juvenile pilocytic astrocytoma, or by the initials JPA. • Can range from low grade to high grade may arise abruptly. A sudden onset of symptoms tends Characteristics Treatment • Occurs most often in children between three and ten to occur with rapidly growing, high-grade tumors. • Slow growing, with relatively well-defined borders Surgery is the standard treatment. If the tumor years of age, but can occur in adults Treatment • Grows in the cerebrum, optic nerve pathways, brain cannot be com­pletely resected, radiation or chemo- Symptoms Surgery may not be an option because the brain stem stem and cerebellum therapy may be given. Chemotherapy may be given • Headaches controls vital life functions and can easily be damaged. • Occurs most often in children and teens to very young children instead of radiation therapy • Nausea Radiation therapy can reduce symptoms and help slow • Accounts for two percent of all brain tumors to avoid damage to the developing brain. Some of • Speech or balance abnormalities the tumor’s growth. Low-grade brain stem gliomas can these tumors can progress to a higher grade, so it is • Difficulty swallowing have very long periods of remission. important to be diligent about following up with the • Weakness or numbness of the arms and/or legs medical team after treatment. • Facial weakness • Double vision Low-Grade Astrocytoma (Grade II) Characteristics Treatment • Slow growing Treatment depends on the size and location of the EPENDYMOMA • Rarely spreads to other parts of the CNS tumor. The doctor will most likely perform a biopsy Ependymal tumors begin in the ependyma, cells that line the passageways in the brain where CSF is produced and • Borders not well defined or surgery to remove the tumor. Partial resections stored. Ependymomas are classified as either supratentorial (in the cerebral hemispheres) or infratentorial (in the • Common among men and women in their 20s–50s or inoperable tumors may be treated with radiation. back of the brain). Variations of this tumor type include subependymoma, subependymal giant-cell astrocytoma, and Recurring tumors may require additional surgery, malignant ependymoma. Ependymoblastoma, which occurs in infants and children under three years, is no longer radiation and/or chemotherapy. considered a subtype of ependymoma. For ependymoblastoma, see primitive neuroectodermal tumor (PNET).

Anaplastic Astrocytoma (Grade III) Characteristics Symptoms • Usually localized to one area of the brain • Headaches Characteristics Treatment • Develops from cells that line the hollow cavities at • Nausea • Grows faster and more aggressively than grade II Treatment depends on the location of the tumor the bottom of the brain and the canal containing the • Speech or balance abnormalities astrocytomas and how far it has progressed. Surgery and radia- spinal cord • Difficulty swallowing • Tumor cells are not uniform in appearance tion therapy, with chemotherapy during or following • Can be slow growing or fast growing • Weakness or numbness of the arms and/or legs • Invades neighboring tissue radiation, are the standard treatments. If surgery • May be located in the ventricles • Facial weakness • Common among men and women in their 30s–50s is not an option, then the doctor may recommend • May block the ventricles, causing hydrocephalus • Double vision • More common in men than women radiation and/or chemotherapy. Many clinical trials (water on the brain) • Accounts for two percent of all primary brain tumors Treatment using radiation, chemotherapy, or a combination • Sometimes extends to the spinal cord The doctor will perform tests to determine if it has are available for initial and recurrent anaplastic • Common among men and women in their 40s and spread to the spinal cord. Surgery followed by radia- astrocytomas. 50s, and in children tion therapy is the usual course of treatment. A shunt • Occurrence peaks at age five and again at age 34 Glioblastoma (GBM) (Grade IV Astrocytoma) may be needed to treat hydrocephalus caused by • Accounts for two percent of all brain tumors blockage of the ventricles. Characteristics Treatment • Most invasive type of glial tumor Standard treatment is surgery followed by radiation • Grows rapidly and commonly spreads to nearby tissue therapy. If surgery is not an option, the doctor may • May be composed of several different kinds of cells administer ra­diation therapy. Chemotherapy is What is the difference between benign and malignant tumors? (i.e., astrocytes, oligodendrocytes) usually given during and after ra­diation therapy or if Benign tumors are slow-growing tumors that can be removed or destroyed if in an accessible location. • Includes distinct genetic subtypes the tumor recurs. Many clinical trials (ex­perimental Malignant tumors (brain cancer) are rapidly growing tumors that invade or infiltrate and destroy normal brain • May have evolved from a low-grade astrocytoma or an treatments) using radiation, chemotherapy, or a tissue. Tumors are graded to indicate how quickly they are growing. Low-grade tumors grow more slowly than oligodendroglioma combination are available for initial and recurrent high-grade tumors. Benign or malignant tumors can recur, which means they grow back after treatment for the • Common among men and women in their 50s–70s GBM. • More common in men than women initial tumor. • Accounts for 17 percent of all primary brain tumors

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MIXED GLIOMA OPTIC NERVE GLIOMA

A mixed glioma is often a combination of an astrocytoma and an oligodendroglioma (see below). Characteristics Treatment • Named for its location on or near the nerve pathways Surgery is standard treatment, usually followed by Characteristics • Weakness or paralysis between the eyes and the brain radiation therapy or chemotherapy. Chemotherapy • Composed of two or more types of glioma cells • Behavioral and cognitive changes • Can range from low grade to high grade may be given to very young children instead of radia- • Graded according to the most aggressive type of Treatment • Occurs most often in infants and children, but can tion therapy to avoid damage to the developing brain. tumor cells Mixed gliomas are generally treated for the most occur in adults • Common among men and women in their 20s–50s ana­plastic (cancerous) type of cell found in the tumor. • Accounts for one percent of all brain tumors Symptoms For example, in the case of a tumor composed of • Headaches an ana­plastic astrocytoma and a low-grade oligo- Symptoms • Progressive loss of vision dendroglioma, the treatment would be based on the • Headaches • Double vision • Seizures anaplastic astro­cytoma—the more aggressive of the • Nausea and vomiting two cell types. • Visual problems SUBEPENDYMOMA

This tumor forms from ependymal cells, and is a variation of an ependymoma. OLIGODENDROGLIOMA Characteristics Treatment This tumor type develops from glial cells called oligodendrocytes. • Slow growing Surgery will be performed when possible. Radiation Characteristics and wait” and evaluate tumor growth through MRIs. • Usually located in the fourth and lateral ventricles therapy may be used if the tumor progresses or re- • Occurs frequently in the frontal or temporal lobes High-grade (malignant) forms of the tumor include • More common in men than in women curs. A shunt may be needed to treat hydrocephalus. • Can be classified as low grade or high grade anaplastic oligodendroglioma and mixed astrocytoma- Symptoms • Common among men and women in their 20s–40s, oligodendroglioma (oligoastrocytoma). Treatment • Headaches but can occur in children for these high-grade tumors is commonly surgery • Nausea • More common in men than women followed by radiation therapy and/or chemotherapy. • Loss of balance • Accounts for two percent of all primary brain tumors Both low- and high-grade oligodendrogliomas can • Sometimes no symptoms occur and tumor • May be associated with 1p or 19q chromosomal recur. If a tumor recurs, the doctor will evaluate it is detected incidentally losses for a second surgical procedure, radiation, and/or chemotherapy. Symptoms • Seizures Gene expression studies are used to classify gliomas • Headaches based on certain characteristics, or genetic profiles. • Behavioral and cognitive changes Oligo­dendrogliomas can be identified by deficiencies • Weakness or paralysis in certain chromosomes named 1p and 19q. Genetic profiling of oligodendrogliomas provides a more Treatment accurate pre­dictor of prognosis and treatment options If the tumor is low grade and symptoms are not severe, than does standard pathology. the doctor may decide to perform surgery, then “watch

“During the six and a half years my son, Timothy, battled brain tumor disease, I learned many What is resection? lessons and developed a variety of coping skills Resection is the surgical removal of a tumor. A total resection means all visible tumor, as seen by the that helped me to care for him. We would neurosurgeon and detected on the scan, has been removed. Even after a total resection, it is likely there are sometimes joke about the fact that I was his tumor cells remaining that will require further treatment. A subtotal or partial resection means that some of the unregistered nurse.” visible tumor remains. The term "debulking" refers to a partial resection. –Wendy Pizzi

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NON-GLIAL TUMORS Craniopharyngioma

The following tumor types develop on or in structures within the brain, such as nerves, blood vessels, and glands. Characteristics Symptoms • Most common in the parasellar region, an area at the • Headaches Acoustic Neuroma base of the brain and near the optic nerves • Visual changes An acoustic neuroma is also known as a vestibular schwannoma or neurilemmoma. • Also grows in the regions of the optic nerves and the • Weight gain Characteristics Treatment hypothalamus, near the pituitary gland • Delayed development in children • Tends to be low grade • Arises from cells that form a protective sheath around The tumor may be observed to monitor its growth, or Treatment • Often accompanied by a cyst nerve fibers surgery may be performed. The goal of surgery is the Surgery is the most common treatment. Radiation • Originates in cells left over from early fetal development • Typically grows around the eighth cranial nerve, but complete removal of the tumor without harming the therapy may be used. • Occurs in children and men and women in their 50s can be found around other cranial or spinal nerves seventh cranial nerve (which controls facial movement) and 60s or causing hearing loss. Radiosurgery may be an Symptoms option. This focused, high-energy radiation prevents • Hearing loss in one ear • Tingling or numbness the growth of acoustic neuromas, but actual shrinkage • Dizziness or vertigo in the face Hemangioblastoma of the tumor may never occur or may take several • Tinnitus (ringing in the ear) Balance problems • months. Characteristics Symptoms • Coordination problems • Commonly located in the cerebellum • Headaches • Slow growing • Nausea and vomiting Chordoma • Originates from blood vessels • Walking and balance problems Characteristics Symptoms • Can be large in size Treatment • Rare and low grade • Double vision • Often includes a cyst Surgery is the standard treatment. Radiosurgery may • Occurs at the sacrum, near the lower tip of the spine, • Headaches • Common among men and women in their 40s–60s be given to destroy multiple inoperable lesions. or at the base of the skull Treatment • More common in men than women • Originates from cells left over from early fetal Surgery and radiation therapy are the common forms • Accounts for approximately one percent of all development of treatment. Chordomas at the base of the skull brain tumors • Invades the bone and soft tissues but rarely the brain can be difficult to remove. Surgical resection may be • Sometimes found in conjunction with von Hippel- tissue possible if the tumor is located in the spine. Lindau syndrome, an inherited condition that may • Can block the ventricles, causing hydrocephalus cause a tendency toward hemangioblastomas or • Can metastasize (spread) or recur kidney cancers

CNS Lymphoma Medulloblastoma CNS Lymphoma is a type of cancer that develops in the lymphatic system. The lymphatic system is a network of • Lack of coordination small organs called lymph nodes and vessels (similar to blood vessels) that carry a clear, watery fluid called lymph Characteristics • Double vision throughout the body. This fluid supplies cells called lymphocytes that fight disease and infection. To correctly • A type of primitive neuroectodermal tumor (PNET) • Behavioral or personality changes diagnose primary CNS Lymphoma, staging must be done. Staging is the process of using CT scanning to examine • Often located in the cerebellum or near the brain stem • Signs of pressure seen behind the eye when many parts of the body. Staging helps confirm where the cancer originated and how far it has spread. • Can spread to the spinal cord through the CSF • May obstruct the fourth ventricle, causing examined with an ophthalmoscope Characteristics Symptoms hydrocephalus Treatment • Very aggressive • Headaches • Occurs most often in children under the age of ten, Surgery is the standard treatment when possible. • Usually involves multiple tumors throughout the CNS • Partial paralysis on one side of the body but may occur in adults Chemo­therapy is usually part of the treatment plan. • More common in people whose immune systems are • Seizures • Slightly more common in males than females Radiation of the brain and spine is often recom- compromised • Cognitive or speech disorders Symptoms mended in adults and children over three years of age. • Often develops in the brain, commonly in the areas • Vision problems • Headaches A shunt may be needed to treat hydrocephalus. This adjacent to the ventricles Treatment • Early morning vomiting tumor may recur years later if not totally resected. • Can be primary (originating in the brain) or secondary Radiation therapy, chemotherapy, and steroids are the • Lethargy or sleepiness • Most common among men and women in their most common forms of treatment. Surgery is rarely 60s–80s, but incidence is increasing in young adults an option because there are usually multiple lesions. • More common in men than women However, a biopsy at the start of steroid treatment can • Accounts for about 2 percent of all brain tumors be critical to ensure the correct diagnosis.

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Meningioma Pituitary Tumor These tumors grow from the meninges, the layers of tissue covering the brain and spinal cord. Meningiomas are The pituitary gland produces hormones that affect growth and the functions of other glands in the body. Certain graded from low to high. The lower the grade, the lower the risk of recurrence and aggressive growth. The WHO pituitary tumors secrete abnormally high amounts of their respective hormones and cause related symptoms. classification divides meningiomas into three grades: Other pituitary tumors do not secrete hormones, but grow and compress brain tissue, causing other symptoms. • Grade I, Benign Meningioma Characteristics • Leaking of fluid from the breasts (galactorrhea) • Grade II, Atypical Meningioma • Named for its location on or near the pituitary gland, • Hair growth in women • Grade III, Malignant (Anaplastic) Meningioma located at the center of the brain behind and above • Impotence in men the nose • Abnormal growth of hands and feet Characteristics Symptoms • Can range from low grade to high grade • Abnormal weight gain • May arise after previous treatment from ionizing • Seizures • May cause excessive secretion of hormones radiation or excessive x-ray exposure • Headaches Treatment • Common among men and women in their 50s–80s • Common among women and men in their 40s–50s, • Nausea and vomiting If the tumor is large or compressing the optic nerve, • Accounts for about 13 percent of all brain tumors but can occur at any age • Vision changes standard treatment is surgery. This can be transphe- • Twice as common in women as in men • Behavioral and cognitive changes noidal surgery, which gains access to the tumor by • Accounts for 34 percent of all primary brain tumors Symptoms entering through the nasal passage (see chapter 5). Treatment • In very rare cases, can invade the skull or metastasize • Headache Radiation therapy may also be used. Some pituitary If there are no symptoms, the doctor may monitor the to the skin or lungs • Depression tumors may be treated with medication, and/or tumor with MRIs. Otherwise, surgery is the standard • Women with meningiomas can experience tumor • Vision loss observed with MRI scans. Certain drugs can block treatment. If the tumor cannot be completely resected growth during pregnancy • Nausea or vomiting the pituitary gland from making too many hormones. or if it recurs, radiation therapy may be given as well. • In rare cases, multiple meningiomas can develop at • Behavioral and cognitive changes Follow up with an endo­crinologist may be necessary to Chemo­therapy for unresectable, aggressive, atypical, the same time • Cessation of menstrual periods (amenorrhea) manage hormonal changes. or recurrent meningiomas is being tested through clinical trials. Follow-up scans are needed indefi- nitely, because meningiomas can recur years or even decades after treatment. Primitive Neuroectodermal Tumors (PNET) There are several tumor types in this category. Names of specific PNETs may be based on the tumor location. Examples include pineoblastoma (located in the pineal region), medulloblastoma (located in the cerebellum), and Pineal Tumor cerebral cortex PNET (located in the cerebral cortex). A malignant form of pineal tumor is called pineoblastoma. Characteristics • Nausea and vomiting Characteristics Treatment • Very aggressive and tend to spread throughout the • Seizures • Named for its location in or around the pineal gland Surgery is standard treatment when possible. Radia- CNS • Unusual sleepiness or lethargy (near the center of the brain) tion therapy may be used as primary treatment in • Grow from undeveloped brain cells • Behavioral or personality changes • Can range from low grade to high grade adults and children over three. Chemotherapy may • Commonly include cysts and calcification (calcium • Unexplained weight loss or weight gain • Can produce an excess of melatonin, a hormone that be given to delay the use of radiation therapy in very deposits) Treatment controls the sleep/wake cycle young patients. Clinical trials using chemotherapy • Tend to be large Surgery is the standard treatment when possible. In • Can block the ventricles, causing hydrocephalus drugs are available for pineal tumors. A shunt may be • Occur most often in young children adults and children over three years of age, surgery • High-grade pineal tumors can spread to the spinal needed to treat hydrocephalus caused by blockage of Symptoms may be followed by radiation therapy to the whole cord through the CSF the ventricles. Treatment for high-grade (malignant) • Can vary depending on location of tumor brain and spinal cord, and chemotherapy. In children • Common types include germ cell tumors, pineal pineal tumors such as a pineoblastoma may involve • Weakness or change in sensation on one side of the under three years of age, surgery may be followed by parenchymal tumors, and gliomas radiation to the brain and spine to control spread body chemotherapy or a clinical trial of chemotherapy to • Occurs most often in children and young adults through the CSF. Clinical trials using chemotherapy • Morning headache or headache that goes away after delay or reduce the need for radiation therapy. or biological therapy following radiation therapy are Symptoms vomiting being investigated. • Headaches • Nausea and vomiting • Fatigue • Visual problems • Memory problems

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Rhabdoid Tumor Metastatic Brain Tumors Characteristics • External tumors cause noticeable lumps; internal tumor • Rare symptoms vary based on location A metastatic, or secondary, brain tumor is one that begins as cancer in another part of the body. Some of the cancer • Highly aggressive and tends to spread throughout the • Balance problems may occur cells may be carried to the brain by the blood, or may spread from adjacent tissue. The site where the cancerous cells • External tumors cause noticeable lumps; internal tumor CNS originated is referred to as the primary cancer. Metastatic brain tumors are often referred to as lesions. Metastatic symptoms vary based on location • Often appears in multiple sites in the body, especially brain tumors are the most common brain tumors. There has been an increase in metastatic lesions as people are the kidneys Treatment surviving primary cancers for longer periods of time. • Difficult to classify; may be confused with Whenever possible, surgery is performed to remove as medulloblastoma or PNETs Symptoms much of the tumor as possible. This is usually followed Characteristics • Occurs most often in young children but can also • Seizures by chemotherapy and radiation therapy. In children • The primary cancer is usually in the lung, breast, occur in adults • Headaches under three years of age, surgery may be followed by colon, kidney, or skin (melanoma), but can originate in • Behavioral and cognitive changes Symptoms chemo­therapy alone. Clinical trials are being studied using any part of the body • Problems with coordination • Vary depending on location of tumor in the brain or autologous bone marrow transplantation (see glossary) • Most are located in the cerebrum, but can also body after high-dose chemotherapy for recurrent or multiple develop in the cere­bellum or brain stem Treatment • More than half of people with metastatic tumors have • An orbital tumor may cause the eye to protrude rhabdoid tumors. Surgery and/or radiosurgery are used if lesions are multiple lesions (tumors) accessible and limited in number. Both of these treat- Schwannoma • Common among middle-aged and elderly men and ments may be followed by whole brain radiation therapy Also known as vestibular schwannoma, neurilemmoma and acoustic neuroma (see acoustic neuroma). women (WBRT). In cases of multiple lesions, WBRT and/or Characteristics • Tinnitus (ringing in the ear) radiosurgery may be given. Chemotherapy specific to • Arises from cells that form a protective sheath around • Balance problems the brain-located metastatic tumor may be used. nerve fibers • Deficits depend on the nerve that is affected • Typically grows around the eighth cranial nerve, but Treatment can be found around other cranial or spinal nerves Other Tumor-Related Conditions Surgery and radiotherapy are the most common forms of Symptoms treatment. If the tumor is not completely removed, recur- • Reduced hearing in the ear on the side of the tumor rence is likely. Cysts Pseudotumor Cerebri when eighth cranial nerve is involved A cyst is a fluid-filled sac that may encapsulate (sur- This condition is not a brain tumor, but its symptoms round) or be located next to a tumor. Based on its mimic a brain tumor. Pseudotumor cerebri most com- Recurrent Tumors location in the brain, a cyst can cause symptoms such as monly afflicts obese adolescent girls and young women. headache, pain, seizures, or a neurological deficit. Cysts Symptoms include head­aches, blurred vision, dizziness, A recurrent tumor is a tumor that has grown back be able to receive additional treatments because of can be surgically removed or drained. If a cyst is not and a slight numbness of the face. The symptoms are after being removed, stabilized, or shrunken. Recur- the risk of severe cognitive damage. However, radio- causing neurological difficulties, the doctor will conduct caused by a buildup of CSF. Treatment is given to relieve rence may occur in the same area as the original surgery, an intense beam of radiation that focuses ongoing MRI and CT scans to observe its growth the symptoms, par­tic­ularly visual impairment. Treat­ment tumor or elsewhere in the brain or spinal cord. only on a specific area, may be an option. Also, many pattern. may include repeated lumbar punctures or medications to patients whose tumors have recurred participate in Usually, symptoms that may indicate a tumor recur- decrease CSF. In severe cases, a shunt may be needed. clinical trials. Neurofibromatosis rence are those the patient had previously, such as A tumor recurrence can be traumatic for patients and Neurofibromatosis is a genetic disorder that can cause Tuberous Sclerosis leg or arm weakness or problems with coordination. families. It brings back feelings of having a life-threat- tumors in various parts of the nervous system. There Tuberous Sclerosis is a genetic disorder that causes The symptoms may return or become more pro- ening disease. While some people do well, recovery are two types of neurofibromatosis. Type 1, the more numerous neurological and physical symptoms, including nounced. Headaches or seizures may occur if there after treatment may be prolonged for others. Some common kind, usually occurs outside of the CNS. Type 2 tumors of the CNS, eyes, and kidneys. Most cases occur is pressure on the brain. feel more tired and find that it takes longer to return occurs within the CNS. Type 2 neurofibromatosis causes in children under 20 years of age. About 50 percent of Treatment options for a recurrence may be surgery, to their normal routine. Fatigue may occur due to multiple CNS tumors, including neurofibromas, multiple tuberous sclerosis patients develop brain tumors. Subep- radiation, chemotherapy or a combination depending either an emotional reaction or physical aspects of meningiomas, bilateral vestibular schwannomas, optic endymal giant-cell astrocytomas are the most common on the size and location of the tumor(s), and the the tumor. Patients and families may also experience nerve gliomas, and spinal cord tumors. Symptoms type, but other tumor types are also associated with this patient’s functional status. Patients who have already depression. Doctors, social workers and counselors include loss of balance, tinnitus, total hearing loss, condition. Most patients suffer from seizures. Treatment had a standard course of radiation therapy may not can help you cope with difficult emotions. facial pain or numbness, and headache. Surgery is the may involve inserting a shunt to prevent hydrocephalus. standard treatment. Surgery is another treatment option.

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5. Brain Tumor Treatments The Treatment Team

Neurologist A doctor specializing in the diagnosis for comparison of changes that may occur after This chapter examines the standard treatments for brain tumors: surgery, and treatment of disorders and diseases affecting treatment.) the CNS. In addition, the services of the following radiation therapy, and chemotherapy. This chapter also describes biologic Neuroradiologist A radiologist (an expert in imaging professionals may be beneficial: techniques) specializing in the interpretation of (targeted) therapy, new treatments currently being tested in clinical trials, Medical Social Worker (MSW) A licensed social diagnostic images (scans) of the brain, spinal cord, worker who assists patients and families with and nervous system. and complementary and alternative medicine (CAM). health-related problems and concerns. MSWs help Neurosurgeon A surgeon specializing in the locate appropriate health care, legal resources, and Before receiving treatment, the patient’s condition must room for expansion. Increased intra­cranial pressure can di­agnosis, treatment, and surgical management financial aid. be evaluated through clinical examinations and imaging cause general symptoms including headaches, seizures, of disorders and diseases of the CNS. Nutritionist A person who specializes in information tests (see chapter 2). When possible, the doctor, patient, nausea, vomiting, and blurred vision. Neuropathologist A doctor specializing in the about dietary needs. and family will discuss a treatment plan based on the Brain edema can also cause focal symptoms by put- di­agnosis of neurological disorders and diseases type and location of the tumor, the patient’s general Physical Therapist A trained individual who helps ting pressure on specific structures within the brain. through microscopic examination of biopsied tissues health, medical history, and preferences. patients restore function, improve mobility, relieve Examples of focal symptoms include problems with (tumor cells). pain, and prevent or limit permanent physical dis- In diagnosing and treating brain tumors, a multi-disci- language comprehension, speech problems, and Neuro-oncologist An oncologist (cancer doctor) abilities. plinary treatment team, made up of various specialists, weakness on the opposite side of the body from where specializing in the treatment of cancers and tumors is generally considered the preferred approach. the tumor is located. affecting the CNS. Speech Therapist A professional who helps people overcome problems understanding and producing Steroids (glucocortico-steroids) are drugs that reduce Radiation Oncologist A doctor specializing in the language. Speech therapists also help with eating Tumor Board brain swelling. The most common steroid is dexametha- delivery of radiation therapy. and swallowing difficulties caused by oral motor sone (Decadron). Other steroids are prednisone and Some medical centers offer the services of a tumor Nurse Practitioner A registered nurse who indepen- problems. methylprednisolone. board. A tumor board is a multidisciplinary group of dently performs physical exams, common diagnostic Rehabilitation Counselor A specialist who helps health care providers involved in the treatment and and laboratory tests and (in most states) can Steroids and Their Side Effects people deal with the personal, social, and vocational diagnosis of CNS tumors. Neurosurgeons, neurologists, prescribe certain medications. Steroids are prescribed to reduce inflammation and effects of disabilities, and works toward increasing radiation oncologists, pathologists, and other medical control swelling of the brain. Steroids can help relieve Physician Assistant A certified health care worker the client’s capacity to live independently. professionals may be part of a tumor board. This group pre-surgery symptoms, which may increase the time to who may perform physical exams, identify health meets and reviews the patient’s MRI films and clinical Occupational Therapist An individual who helps make treatment decisions. Steroids may be prescribed problems, and plan treatment under the direction and pathological information. The tumor board then clients to compensate for permanent loss of at diagnosis, or before or after surgery. These drugs do and supervision of a medical doctor. discusses treatment options and makes a group recom- not kill tumor cells, but can improve a patient’s condi- function by improving basic motor functions and mendation regarding treatment. Neuro-oncology Nurse Specialist A registered nurse tion. Steroids may be taken alone or combined with reasoning abilities. specializing in patient education (including symptom Before receiving treatment, patients commonly receive other forms of treatment. When the swelling is under management) and support services for brain tumor Clinical Psychologist A licensed professional who medication(s) to manage the symptoms of the tumor. control, then the dosage is gradually tapered off. patients. can help patients and their families adjust to the Steroids have a range of short- and long-term side effects of illness on their lives. Neuropsychologist A licensed psychologist special- Medical Management effects. Short-term side effects include insomnia, facial izing in how the brain functions and the impact Physiatrist or Physical Medicine and Rehabilita- swelling and flushing, increased sweating, increased that brain damage has on one’s abilities. (Please tion Specialist A physician specializing in physical Brain Edema appetite, moderate abdominal pain, nervousness, note: although neuropsychologists are frequently medicine and reha­bilitation. Physiatrists specialize Brain tumors add mass within the skull. Tumors can personality and mood changes, hoarseness, throat not consulted until after treatment, it may be in restoring optimal function to people with injuries interfere with the circulation of the brain’s blood supply, irritation, weight gain, water retention, and thirst. Some preferable to do so at diagnosis. That way, a more to the muscles, bones, tissues, and nervous system causing swelling of the normal tissue surrounding long-term side effects include muscle wasting (especially accurate evaluation can be made before treatment (such as stroke survivors). them. This swelling is called brain edema. Brain edema thigh muscles), peptic ulcers, glaucoma, fatigue, weak- causes increased intracranial pressure (pressure inside ness, osteoporosis, impairment of the hip joint, diabetes, the skull) because the skull is a rigid container with no hypertension, and loss of bone calcification.

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Some patients who take steroids for a few days or weeks • What are the side effects of each treatment option? neurosurgeon to identify the eloquent cortex, the areas from several hours to two days in the ICU, the patient do not experience side effects; others do. Steroids can of the brain that control important functions such as will be moved to a regular room. • Which treatment would you take if you had my cause both short-term and long-term side effects if taken speech, sensation, and movement. Once these delicate tumor? During recovery, breathing exercises are encouraged to over a long period of time, or stopped suddenly without areas have been identified, the patient is put back under keep the lungs clear. The health care team will work with being monitored by a doctor. Patients should never stop • If I am more interested in quality of life than how general anesthesia, and the surgery is completed. the patient to get him or her up and around as soon as taking steroids without the doctor’s knowledge. Patients long I live, which treatment would you recommend? possible. This will help get the body’s systems function- should discuss monitoring and all possible side effects Biopsy • Are there any clinical trials for which I am eligible? ing again. with the doctor. A biopsy is a surgical procedure in which a small sample • What questions are those clinical trials asking? of tissue is taken from the tumor and examined under The doctor may give a referral to a rehabilitation a microscope. The purpose of a biopsy is to diagnose a program if necessary. Therapists can help with balance, • Do you have the equipment necessary to deliver Surgery tumor in order to find out its type and grade. strength, walking, talking, and other daily activities. stereotactic radiosurgery and fractionated Surgery or resection is the primary form of treatment Social workers, case managers, and discharge planners stereotactic radiation therapy? Stereotactic or Needle Biopsy for brain tumors. The goal of surgery is to remove the can help coordinate continued care before leaving the • If I wanted a second opinion from another A stereotactic or needle biopsy is used to take tissue tumor without causing damage to critical neurological hospital. neurosurgeon or radiation oncologist, whom would samples from tumors in hard-to-reach areas of the functions. When only part of a tumor can be removed, you recommend? brain. The patient is usually awake during this proce- Other Surgical Procedures and Devices it is possible that the tumor will recur. Therefore, the dure, but it can also be performed with the patient entire tumor is removed whenever feasible. • What factors do you look at to predict how I am Embolization under anesthesia. A special frame called a static head going to do? Embolization is a treatment that cuts off a tumor’s blood Debulking is another term used for a partial resection. frame holds the patient’s head in place. Another method, supply by clogging the small blood vessels that feed the Debulking attempts to remove as much of a tumor In some cases, surgery is urgent because of the tumor’s called “frameless” or computer-assisted image-guided tumor. A radiologist or neurosurgeon inserts a catheter as is possible. It can alleviate symptoms and improve location. The surgeon will obtain the patient’s medical brain needle biopsy, does not use a static head frame. through an incision in the skin of the groin. Guided by the effectiveness of other therapies, such as radiation history and perform surgery as soon as possible. After giving a local anesthesia, the neurosurgeon makes an x-ray, the catheter is advanced to the tumor site. An therapy and chemotherapy. In general, radiation and a small hole in the skull. A narrow, hollow needle is Just before surgery, all or part of the patient’s head will embolic agent is injected into the tumor. This may be a chemotherapy treatments are used as secondary or inserted through the hole to extract tumor tissue. After a be shaved. If possible, the patient will discuss the type liquid or powdered substance, or more commonly, tiny adjuvant treatments for tumors that cannot be managed needle biopsy, the patient is monitored for several hours of anesthesia to be used with the anesthesiologist. An metal coils. Embolization can reduce blood loss during using only surgery. However, they may be used without in the recovery room. The patient may spend a few intravenous (IV) line will be placed in the arm to adminis- brain surgery, shorten the length of time in surgery, surgery if the tumor is inoperable. additional days in the hospital. ter fluids and medications. increase the chances of a complete resection, and Prior to surgery, the neurosurgeon needs to determine Risks and Complications of Surgery reduce the risk of damage to adjacent normal tissue. Surgical Procedures the location of the tumor and plan the safest method A craniotomy is a major operation. Risks and complica- Lumbar Puncture (Spinal Tap) of performing the operation. To do this, the patient will Craniotomy tions of surgery can include bleeding, infection, brain A lumbar puncture is a procedure that extracts CSF receive one or more of the following: a scan (MRI, CT or Craniotomy is the surgical opening of the skull (cranium). edema, seizures, paralysis, and behavioral or cognitive surrounding the spinal cord. A local anesthetic is given PET), and hearing, neuropsychological or speech tests. During this procedure, the patient is usually under gen- changes. Some normal brain tissue may be damaged to numb the spine in the area where the needle is The patient will meet with the neurosurgeon to discuss eral anesthesia. The surgeon makes an incision through during surgery. This can lead to permanent impairment inserted. The CSF is examined to detect abnormal cells, the surgery, length of hospital stay, any pre-existing a section of the scalp. Then, using sophisticated surgical of the functions related to the injured area of the brain. an infection, or the presence of protein or blood. medical conditions, and possible risks of surgery. Pa- tools, a part of the skull is removed and the covering of For a short time after surgery, symptoms may appear the brain (dura) is opened to reach the tumor. As much tients should inform the neurosurgeon of all medicines to be worse than before surgery. However, most side Shunt of the tumor as possible is removed. The dura is sutured effects of surgery usually decrease or disappear over being taken, including over-the-counter medications, A shunt, or catheter, is a device consisting of a thin tube and the part of the skull is put back into place. Then the time. herbs, and supplements. Patients may also meet with and a valve that controls the flow of fluid. A shunt is a neuro-oncologist or other members of the treatment scalp is closed with staples or stitches. These are usually Post-Operative Care used to divert CSF from the brain into the abdominal team. It is helpful to prepare a list of questions and removed after about seven to 10 days. After waking up in a recovery area, the craniotomy cavity, where it is absorbed into the bloodstream. During plan to keep a journal to record important information. Awake Craniotomy patient will be moved to the intensive care unit (ICU). a cerebral shunt procedure, the surgeon drills a small Sample questions might include: Awake craniotomy, or surgery under local anesthesia, is Heart rate, intracranial pressure, and other functions hole in the skull. One end of the shunt is inserted into a • Is my tumor benign or malignant? a pro­cedure in which the patient is allowed to return to will be closely monitored. The patient may wear special ventricle; the other end is tunneled under the skin to the consciousness after the brain has been exposed. With stockings to prevent blood clots. He or she may be abdomen. Then, excess CSF drains into the abdomen. • What is the name, type, and grade of my tumor? the patient awake, the neurosurgeon can perform brain temporarily put on a machine called a ventilator that • What are the treatment options? mapping. Brain mapping is a procedure that allows the helps with breathing. Generally after spending anywhere

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Ommaya Reservoir patient to have an immediate follow-up scan a few days in conjunction with other treatments, including surgery, An Ommaya reservoir is a surgically implanted catheter after surgery. radiation therapy and chemotherapy. The only common (tube) used to inject medicine or extract CSF from side effect is significant sensitivity to sunlight for about the ventricles. The catheter is attached to a small Intraoperative Ultrasound Imaging one month after treatment. Intraoperative ultrasound imaging is a method used mushroom-shaped chamber (reservoir) beneath the during surgery to gauge the depth, diameter or center, scalp. A needle is inserted through the skin and into the Radiation Therapy and edges of the tumor. It also helps to distinguish reservoir to administer medication and/or to obtain CSF between the tumor, necrosis, a cyst, fluid buildup, and samples. Radiation therapy (RT) uses high-energy x-rays or other normal brain tissue. The device sends high-frequency types of ionizing radiation to stop cancer cells from sound waves to the brain. The waves bounce off the Brain Mapping dividing. Radiation therapy may be used when surgery brain and are sent to a computer that transfers the is not advised, or for tumors that cannot be completely Brain mapping is used during an awake craniotomy. It information into a two-dimensional picture displayed on resected. It may be used after surgery to destroy helps the neurosurgeon to avoid injuring delicate areas a television screen. residual tumor cells and prevent or delay tumor recur- of the brain that may not be visible in a scan. In this rence. Radiation therapy can stop or slow the growth of procedure, small electrodes are used to identify the Microsurgery inoperable tumors. Use of radiation therapy is avoided areas called the eloquent cortex that control speech, Microsurgery involves the use of a high-powered in children below the age of three because it damages sensation, and movement. The patient is required to microscope to magnify the operating area, thereby Conformal Radiation the developing brain. talk, count, and perform other basic tasks during brain increasing precision. Microsurgery is a standard pro­ Conformal radiation is a type of conventional radiation mapping. The patient feels no pain, as there are no cedure in craniotomies. Ionizing radiation damages the basic building material in treatment. A linear accelerator sends a high dose of pain receptors in the brain. This part of the procedure cells (DNA). Normal healthy cells can repair the damage radiation that has been modified by computer to match typically lasts from 10 to 40 minutes. Brain mapping Transphenoidal Surgery better than tu­mor cells. Over time, irradiated tumor cells or conform to the shape of the tumor. The objective is improves the accuracy of a cran­i­otomy. It can also Transphenoidal surgery is a method of surgery used die. Thus, the results of radiation therapy may not be to apply a uniform level of radiation to the tumor while clarify the borders of a tumor and distinguish tumor to reach tumors in the sellar area, just behind the eyes. apparent until several months after treatment. reducing the amount of radiation that reaches other tissue from necrosis (dead tumor cells), a cyst, CSF, and It accesses brain tumors through an incision made parts of the brain. Conformal radiation may be used to External beam radiation is the most frequently used normal brain tissue. through the nostrils. Transphenoidal surgery is com- minimize injury to delicate structures such as the salivary form of radiation therapy. It involves machines called monly used for pituitary tumors. glands, optic pathways, and brain stem. Another technique to identify eloquent areas of the linear accelerators and cobalt machines. They direct brain that control speech, sensation, and movement radiation at the tumor from outside the patient's body. Stereotactic Surgery Intensity Modulated Radiation Therapy (IMRT) is a Functional MRI. A Functional MRI is done before Stereotactic surgery uses a scanning device to find the Conventional Radiation Therapy Intensity Modulated Radiation Therapy (IMRT), is a surgery. (See chapter 2 for a detailed description of exact loca­tion of the tumor and the structures surround- Conventional radiation therapy delivers an external type of conformal radiation therapy. IMRT is designed Functional MRI.) ing it. It sends the information to a computer, which beam of radiation focused at an entire region of the to restrict the treatment beam to the tumor, regardless produces a three-dimensional image of the brain. This brain containing the tumor. After resection, the area of its shape. The intensity of radiation is made to vary Intraoperative MRI technique helps the surgeon both plan the surgery with where the tumor was located and the surrounding across the beam, so that a higher intensity reaches the Intraoperative MRI is an imaging system that works in greater precision and arrive at difficult to reach areas margin is irradiated. The radiation is fractionated into thickest parts of the tumor. Multiple beams are used real-time to capture and display images throughout during surgery. Stereo­tactic surgery is used in several many small doses and given over a period of time (usu- simultaneously and meet at the target point. surgery. This technology allows the surgeon to pinpoint capacities: to perform a biopsy, remove a tumor, implant ally five to seven weeks, excluding weekends). A typical the tumor before the incision is made, and navigate it radiation pellets or for other treatments. It helps the Stereotactic Radiosurgery (SRS) daily dose of radiation therapy is 1.8–2.0 Gy (Gray). The more precisely throughout the surgery to make sure neurosurgeon navigate his or her way around during Stereotactic radiosurgery (SRS) is different than total dose of a radiation treatment will vary depending that a more complete resection can be made. Some of surgery, and minimize the length of surgery. conventional radiation therapy. SRS delivers a single, on the tumor type, but ranges between 50–60 Gy. The the newer intraoperative MRIs have magnets that are high dose of radiation in a one-day session. The dose doses may be hyperfractionated, or divided into more as strong as 3 Tesla, which are optimal in obtaining a Photodynamic Therapy (PDT) can range from 2–30 Gy. Radiosurgery is not surgery, frequent, less intense doses. high-resolution image. Because of its location system, Photodynamic therapy is a cancer treatment in which but like surgery, it is meant to be ablative: to destroy intraoperative MRI generally helps surgeons to make patients are injected with a light-sensitive drug. This drug Conventional radiation therapy can be either focused all the tumor cells in its path. Size and location of the smaller incisions, which leads to less invasive proce- stays in malignant cells longer than in normal cells. The or whole brain radiation therapy (WBRT), depending on tumor are important eligibility criteria for SRS. In an SRS dures and as a result, a shorter recovery time for the neurosurgeon performs laser surgery, shining a laser the location and size of the tumor(s). Focused radiation procedure, a head frame is attached to the skull. Then CT patient. An MRI scan is often performed before patients light directly on the tumor. A chemical reaction with the therapy aims x-rays at the tumor and area surrounding or MRI scans are taken. With the aid of computer imag- leave the operating room so that the surgeon can verify photosensitive drug destroys the cancer cells without it. WBRT aims radiation at the entire brain. WBRT is used ing, the location of the tumor is accurately calculated. The the tumor resection, and it eliminates the need for the harming surrounding normal tissue. PDT can be used to treat multiple tumors and metastatic brain tumors. radiation is delivered directly to the tumor, often from

National Brain Tumor Society | 800 934 2873 | www.braintumor.org National Brain Tumor Society | 800 934 2873 | www.braintumor.org 38 THE ESSENTIAL GUIDE TO BRAIN TUMORS BRAIN TUMOR TREATMENTS 39 several different directions. Newer methods of SRS do This allows SRT to be used in situations where single Chemotherapy not use a head frame. dose SRS cannot be applied safely. Some applications How is radiation measured? Chemotherapy is the treatment of disease by means of include: for tumors near the optic nerves, brain stem, or Radiation is measured by an international unit There are several types of machines that are used to chemicals (drugs) that have a toxic effect on tumor cells eyes; for some large tumors; and for pediatric patients. ® ® called Gray (Gy). Each dose of Gy represents a administer radiosurgery: Gamma Knife , LINAC, XKnife , as they divide. Chemo­­therapy is given in cycles, which ® ® ® ™ specific amount of energy that is absorbed by Synergy S, Trilogy , CyberKnife , Novalis Tx and cyclo- consist of “on” and “off” phases—days of treatment the body. tron. The prin­ciples are the same, but they use different followed by periods of time between treatments. Cycles sources of energy and different methods to target the vary depending on the drug or drugs used. Chemo- How does radiation destroy a tumor? tumor (see example images of radiosurgery on the right). therapy is usually taken orally or by injection. It may be Radiation works by damaging DNA. This damage given alone or in combination with other treatments. Gamma Knife Radiosurgery stops cells from being able to divide, or reproduce. Chemotherapy is usually a secondary therapy. It is also The Gamma Knife machine contains 201 sources of ra- Over a period of time, tumor cells that received used to delay or replace radiation treatment in young dioactive cobalt. It focuses a high dose of radiation to a radiation will die when trying to divide. children. Chemo­therapy may be an important com- small target area. The Gamma Knife is most effective for ponent of therapy for some “chemo-sensitive” tumors small tumors that are round or oval shaped. Gamma (e.g., CNS lymphoma, medulloblastoma). Knife can be used as a primary form of treatment, or as with steroids. Skin reactions (rash, redness, or irritation) a secondary treatment after surgery. and hair loss may occur in the area where the radiation One approved technique to deliver chemotherapy is focused. directly to brain tumors is the polymer wafer implant. LINAC Radiosurgery Biodegradable wafers are saturated with the chemo­ Linear accelerator (LINAC) radiosurgery sends a single, Some patients may experience long-term, or delayed, therapy drug, BCNU. Several wafers are inserted into high-energy x-ray that is designed by a computer to side effects. These may occur months or years after the tumor cavity after the tumor has been resected. The match the shape of the tumor and avoid healthy tissue. treatment. Delayed side effects can include varying wafers are left there to dissolve over time. In this way, a A linear accelerator is also used for Intensity Modulated degrees of memory loss, coordination problems, concentrated dose of BCNU (approximately 100 times Radiation Therapy (IMRT). incontinence, and problems with reasoning and think- higher than that tolerated through IV) is able to bypass ing. Loss of pituitary gland function can also occur. In the blood brain barrier. Proton Beam Radiosurgery the case of children, RT can result in delayed physical The brain has a defense mech­anism called the blood Proton beam radiosurgery is also called heavy particle growth and/or delayed cognitive development and can brain barrier, which keeps out harmful substances such radiation therapy. This method uses beams of charged cause learning disabilities. as bacteria and chem­icals. The blood brain barrier can protons (atomic par­ticles) produced by a machine called Sometimes dead tumor cells form a mass in the brain. also prevent some chemo­therapy drugs from entering a cyclotron. Similar to LINAC, the cyclotron sends a This is called radiation necrosis. Necrosis may look like the brain. However, a technique called blood brain bar- single beam that is designed by a computer to match a tumor on a scan and can cause similar symptoms rier disruption can be used to temporarily interrupt the the shape of the tumor. Proton beam radiosurgery is (headache, memory loss, seizures, personality changes, barrier and allow chemotherapy drugs to pass through used to treat tumors at the base of the skull and tumors Radiosurgery images from top to bottom: CyberKnife®, courtesy of Accuray, Inc. and cognitive problems). A biopsy may be required to the blood vessels into the brain. In this procedure, most of unusual shapes. Leksell Gamma Knife®, courtesy of Elekta, Inc. make a correct diagnosis. Surgery and/or steroids may commonly used in patients with lymphoma, a catheter be necessary to treat necrosis. Stereotactic Radiotherapy (SRT) Novalis Tx™, courtesy of Brainlab AG is fed into the cerebral artery. A drug called mannitol is Stereotactic radiotherapy (SRT) combines the precision If a patient begins to have symptoms after radiation injected into the catheter. Mannitol disrupts the blood of radiosurgery with fractionated radiation. SRT utilizes therapy and the tumor has not recurred, he or she may brain barrier. While the blood brain barrier is open, Side Effects of Radiation Therapy computer imaging to precisely locate the tumor. Then be experiencing delayed side effects. The patient should chemo­therapy is delivered through the catheter. The Short-term side effects occur during or shortly after a series of low doses of radiation are given over several talk to the doctor about these symptoms and how to effects of mannitol wear off after a period of time. radiation treatment. Most can be treated or in some treatment sessions. Treatment may be given once or manage them. Currently, there is no definitive treatment There are some cases where chemotherapy treatment cases will decrease or dis­appear after treatment has twice a day for several weeks. These fractionated doses for the long-term effects of radiation therapy, although is not used. Certain types of tumors do not respond to been completed. The most common short-term side add up to a larger total dose of radiation than would be in some instances surgery, steroids, anti-coagulants, or chemotherapy. Also, chemotherapy can be phy­sically effects of radiation therapy are fatigue, loss of ap- given in a single SRS treatment. CNS stimulants may help alleviate symptoms. taxing. Patients should have overall good health in petite, nausea, and short-term memory loss (loss of order to tolerate the side effects of these treatments. SRT has some advantages over other types of radiation recently-learned information). Short-term memory loss therapy. The precision of delivery and lower individual usually subsides within two months after RT treatment is doses of radiation cause less damage to normal tissue. completed. Brain edema may occur and may be treated

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Side Effects of Chemotherapy or redness occurs. Do not rub or massage the area. (See Chemotherapy and Biologic Therapy Drugs Most chemotherapy drugs enter and affect the patient’s chapter 6 for more information about DVT.) Name Common Side Effects entire system. Side effects are caused when the drugs Chemotherapy Drugs damage normal cells that are dividing. Reactions can Bevacizumab (Avastin©) • Fatigue • High blood pressure range from mild to severe. The side effects of chemo- In general, the chemotherapy used to treat people Taken by IV • Generalized weakness • Minor nose bleed therapy vary depending of the type of drug that is used with brain tumors is well tolerated. Newer antiemetics • Abnormal wound healing • Protien leakage in the urine and the parts of the body or systems affected. Each (antinausea drugs) have greatly reduced the nausea • Blood clots chemotherapy patients may have experienced in the patient's reaction to chemotherapy is unique. All side Carboplatin (Paraplatin©) • Nausea and vomiting (mild, delayed) • Weakness (asthenia) past. Oncologists or oncology nurses will work with effects should be reported to the doctor. There are treat- Taken by IV • Hair loss • Fatigue ments available to alle­viate many of the side effects, patients to minimize or prevent anticipated side effects. • Loss of appetite including rashes and nausea. In some cases, the type of The following table shows commonly used chemo­ INTRAVENOUS POLYMER WAFER IMPLANT chemo­therapy drug may be changed. therapy and biologic therapy drugs, how they are taken, Carmustine and some of their common side effects. Please keep in (BCNU, BiCNU©) • Nausea and vomiting (mild) • Seizures If chemotherapy affects the bone marrow, it can • Potential respiratory problems • Intracranial infection mind that the side effects any individual experiences Taken by IV or inserted dur- cause myelosuppression. This is the term for the low ing surgery by polymer wafer (smokers may not be able to re- • Abnormal wound healing may not match those listed. Uncommon side effects may production of blood cells. Red blood cells carry oxygen implant ceive a full course of treatment) • Brain edema (swelling) indicate a serious problem, so it is important to inform • Fatigue throughout the body, white blood cells fight infection, the medical team of all side effects experienced. • Myelosuppression and platelets form blood clots to stop bleeding. Low red • Pulmonary fibrosis blood cell count or anemia, can cause fatigue, dizziness, The drug’s generic name is followed in parentheses by chills, and shortness of breath. Low white blood cell its brand name. Cisplatin (Platinol©) • Nausea and vomiting • Fatigue count, or leukopenia, can cause infection, fever, chills, Taken by IV • Neuropathy • Hearing loss or ringing in ears • Weakness • Kidney damage sweating, diarrhea, sore throat, coughing, sores in the Clinical Trials mouth, and/or a burning sensa­tion during urination. Irinotecan (CPT-11 or • Fatigue • Low white blood cell count Clinical trials are research studies conducted on hu- Low platelet count can cause easy bruising, slow healing Camptosar©) • Nausea and vomiting • Low platelet count mans. The studies are designed to determine the safety of cuts or scrapes, small red spots on the skin, pink or Taken by IV • Diarrhea • Hair loss and side effects of new therapies, and the effectiveness red urine, blackness or blood in stools, bleeding gums, of new and current treatments. Clinical trials usually nosebleeds, or heavy menstrual periods. Lomustine (CCNU) • Fatigue • Nausea and vomiting undergo three phases before reaching completion. Each Taken orally • Loss of appetite • Myelosuppression If chemotherapy affects the di­gestive system, it can phase answers a question about the safety and effec- Methotrexate • Loss of appetite • Fatigue cause mucositis. Mucositis means in­flammation to the tiveness of the treatment being tested. The differences cells lining the mouth, throat, stomach and intestines. (Rheumatrex or Trexall©) • Nausea and vomiting • Pulmonary fibrosis (inflammation and between the phases are as follows: • Mouth sores internal scarring of the lungs) Inflamed mouth or throat can cause dryness of the Taken orally, by injection, or intrathecally (injected directly mouth, tongue, and lips, burning or tingling sensations, • Phase I trials involve testing a treatment to determine into spinal fluid) or difficulty chewing or swallowing. Inflamma­tion to the a safe dosage and its side effects. stomach and intestines can cause diarrhea, constipa- • Phase II trials involve testing a treatment for Temozolomide (Temodar©) • Constipation • Headache tion, nausea, or vomiting. effectiveness. Taken orally • Nausea and vomiting • Myelosuppression • Fatigue Chemotherapy can weaken the immune system, a • Phase III trials involve comparing a new treatment condition called immunosuppression. This makes a against a standard treatment for its effectiveness. Vincristine (Oncovin or • Jaw pain • Fatigue patient more susceptible to infections. Other side effects Vincasar PFS©) • Constipation • Neuropathy If a drug or treatment is showing statistically positive of chemotherapy include neuropathy (numbness and Taken by IV results, the clinical trial may end early, and the drug tingling in the arms or legs), skin reactions, hair loss, and may be placed on the market more quickly. Procarbazine (Matulane) • Fatigue • Abdominal pain fatigue. Some chemo­ther­apy drugs can cause infertility, Taken orally • Nausea and vomiting • Constipation menopause, and kidney damage. Certain chemotherapy Clinical trials follow a treatment plan, or protocol, and • Nervousness • Myelosuppression agents can increase the risk of developing blood clots. are conducted by various institutions such as hospitals, • Rash • Need to avoid foods high in tyramine* This condition is called thrombophlebitis or deep vein universities and research institutes. A group of patient • Mouth sores, dry mouth which cause increased blood pressure thrombosis (DVT). DVT requires medical treatment and advocates called the In­stitutional Review Board (IRB) can develop to a life-threatening condition. Notify your examines the protocols to make sure they are designed *Tyramine is a normal substance in the body that helps support blood pressure. Tyramine is also found in certain foods, including: beer, red wine, doctor immediately if swell­ing in the leg or arm, leg pain, and conducted with appropriate safeguards for the vermouth, homemade bread, cheese, sour cream, bananas, red plums, figs, raisins, avocados, fava beans, Italian broad beans, green bean pods, eggplant, pickled herring, liver, dry sausages, canned meats, salami, yogurt, soup cubes, commercial gravies, chocolate, and soy sauce.

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patients. There is an IRB at every institution that is When a decision is made to participate in a clinical suppressors. Tumor suppressors tell cells to die when conducting research. trial, the patient or his/her representative will undergo What happens after treatment is over? their DNA becomes damaged. Cancer cells have a process called informed consent. Informed consent damaged, mutated DNA. Instead of dying, they multiply People participate in clinical trials for a number of After treatment is over, most patients are usually will explain the study’s treatments and tests as well as uncontrollably. Gene therapy is a method to introduce a reasons: to try a new treatment method, to contribute monitored for tumor recurrence on a regular possible benefits and risks. If a patient agrees, he/she non-mutated gene into a tumor. This may be achieved to developing improved treatments, or to help find a basis through MRI or CT scans. The doctor may or the representative will sign a consent form. A patient by inserting the gene into a virus, and the virus acts as cure. If a patient is considering participating in a trial, decide to take scans every two to six months can decide to leave the trial at any time. During the trial, a carrier, or vector. The virus attaches to the tumor cells the trial he or she chooses will depend on the patient’s depending on the tumor type and patient’s patients will be monitored closely and asked to report and transfers the gene into them. The transferred gene tumor type, when it was diagnosed, treatments that status. all symptoms of the treatment. then acts as a tu­mor suppressor, causing the tumor have already been received, and the patient’s state of cells to die. Surgery is often required to directly inject health. Most trials have a series of criteria a patient For more clinical trial information visit www. the viral vector carrying the non-mutated gene into the needs to meet in order to participate. braintumor.org or contact the National Cancer inhibitors, which interfere with the growth of blood ves- tumor. There are both benefits and drawbacks to consider. In­stitute (NCI) at 1 800 4CANCER (1 800 422 sels that feed the tu­mor; antisense therapies (proteins 6237) or visit www.cancer.gov. Participants in clinical trials receive high-quality medi- designed to block the function of another protein); and Vaccine Therapy cal care. Par­ticipants are also among the first to benefit differentiators, which make cells less likely to divide. In This method attempts to use the patient’s immune if a new approach is proven effective. However, a new Biologic/Targeted Therapies addition, there are new chemotherapy treatments, gene system to attack the tumor. Typically, a portion of the treatment may not be better than or even as good as therapy, growth inhibitors, and immunotoxin therapy. brain tumor is removed from a patient and processed Biologic (also known as targeted) therapies offer an the standard treatment. There may also be unexpected in a number of ways to produce a vaccine. This vaccine option for treatment for people who have tumor recur- Biologic Therapy Drugs side effects. of processed tumor tissue is then injected into the rence after surgery, radiation therapy or chemotherapy. Bevacizumab (Avastin©) is an angiogenesis inhibitor patient’s skin. The patient’s immune system recognizes A patient should ask the following questions when Biologic therapies work through a variety of mechanisms that has been granted accelerated FDA approval to the injected substance as foreign or abnormal, and deciding on a clinical trial: including stimulating a person’s own immune system treat glioblastoma in patients who have progressive specialized immune cells in the body learn to recognize to turn against the tumor or targeting specific pathways disease following prior therapy. A number of clinical • Who is conducting the study? Is it conducted by an the abnormal tissue. Those immune cells circulate in the tumor cell that give the tumor its characteristics. trials are underway to investigate the use of beva- individual institution, or part of a national study? around the body and if they come in contact with brain These characteristics include increased rate of growth cizumab alone and in different drug combinations tumor cells, they direct other immune cells to try and • Where is the study being done? Are there multiple (proliferation), the ability to invade brain tissue, and to treat brain tumors as an initial treatment or for kill the tumor cells. Alternatively, investigations are locations? Is there a participating institution closer resistance to normal signals that induce cell death recurrence. ongoing to develop vaccines against proteins that are to home? (apoptosis). Biological response modifiers (BRM) may Isotretinoin (Accutane©) and thalidomide (Thalamid©) unique to tumor cells in general, which would eliminate be naturally occurring substances in the body that fight • Does the center have a designated neuro-oncology are other biologic therapies being tested in clinical the need to undergo the expensive and time consuming infections or diseases or agents specifically designed (brain tumor) program? trials for use in brain tumor patients. These drugs process of developing a patient-specific vaccine. Vaccine to target specific cellular pathways. The body normally are also FDA approved for treatment of other medical therapy is still experimental and has not yet been • What is the phase of the study? Has it been tested produces small amounts of some BRMs. Some biologic conditions. Both isotretinoin and thalidomide cause proven to work in all patients, but much research is on people with brain tumors before? therapies can cause the body to produce larger amounts severe birth defects. Therefore, men and women being conducted. of BRMs than normal. • What tests, treatments, and commitment of time receiving these drugs are required to use at least two does the study involve? Does it involve a hospital Some of the new biologic therapies are: angiogenesis forms of contraception, and women are required to Immunotoxin Therapy stay? If so, for how long? take monthly pregnancy tests. An immunotoxin is a poison linked to a part of the body’s immune system, such as an antibody or protein. • What other choices are available? How does the Other biologic therapy drugs continue to be developed “Be aware that the patient, family, friends, and Immunotoxin therapy is a process of fighting cancer study treatment compare to the alternatives? and many are currently being tested in clinical trials, loved ones will go through a range of emotions cells by introducing a toxin directly into tumor cells. some in combination with previously approved agents • What potential side effects may occur and how can and reactions to a brain tumor diagnosis and The toxins are usually bacterial. Because of the risk of (i.e. irinotecan, BCNU). The trials include drugs such they affect day-to-day life? treatment. These feelings will include denial, introducing toxins into normal brain tissue, the toxins as cediranib (Recentin©), sorafenib (Nexavar©) and anger, acceptance, and even guilt. I feel strongly are attached to other proteins that will selectively target • What does the treatment cost? Is any part of it erlotinib (Tarceva©). that it is part of your doctor’s responsibility, not only tumor cells. The goal of immu­no­toxin therapy is to provided for free? just to deliver the treatment, but also to help pa- Other Biologic Therapies target tumor cells and kill them without harming normal Obtaining the answers to these questions can help a tients and their families cope with the disease.” brain cells. Immunotoxin therapy is experimental. patient decide which treatment is right for him/her. –Radiation oncologist Gene Therapy Research is ongoing and several different im­mu­notoxins Clinical studies have identified certain genes as tumor are being developed.

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pain, and balance the central nervous system. people read about the many approaches available and Massage Therapy become educated, then find a licensed CAM profes- Massage therapy involves manipulation of muscles and “Every patient is a unique person in a unique Acupuncture is primarily used to treat body pain, sional to help make the right choice for their particular connective tissues of the body. Massage therapists ap- environment...” headaches, fatigue, nausea, vomiting, constipation, situation. ply pressure to the surface of the body primarily with –Neuropsychologist diarrhea, and insomnia. However, it is also quite useful their hands. Massage techniques affect various systems in treating anxiety, depression, mood swings, weight It is not recommended to alter the diet during chemo- of the body, including the musculoskeletal, circulatory, loss, edema, neuropathy, muscle atrophy, and muscle therapy or radiation treatments, when appetite is poor. lymphatic, and nervous systems. Convection-enhanced delivery is an experimental method weakness. It is more important for the patient to eat whatever food to introduce immunotoxins into tumors. This method he or she can tolerate. Ask the doctor if a particular Acupuncture should not be used when the following Benefits of massage therapy can include stress inserts immunotoxins into the brain by a small, pres- diet has any specific contraindications (things not conditions are present: a low platelet count (<15,000), reduction, increase in blood circulation and lymph surized pump. Con­vection-enhanced delivery is able to recommended). For example, a diet high in antioxidants a low white blood cell count (<1.0), throm­bosis or flow, relaxation of muscles to relieve chronic pain, and bypass the blood brain barrier. The treatment is usually may have an adverse effect on radiation treatment and embolism (blood clots), hemophilia, and/or the use of improvement of range of motion in the joints. admin­istered over a period of several hours and is often chemotherapy. completed during one sitting. Convection-enhanced medications that increase bleeding (i.e., blood thinners Training requirements for massage therapists vary from such as Coumadin). delivery is currently being tested in clinical trials as a Exercise state to state, but approximately 37 states in the United promising tool in the treatment of brain tumors. The primary purpose of exercise is to enhance—rather States presently license massage therapists. Ayurveda than deplete—energy, strength, and vitality. The goal Ayurveda, which was developed in India, consists mainly Herbal Medicine Complementary and Alternative Medicine is to breathe properly and increase lung capacity, which of specific dietary recommendations and custom- Herbal medicine utilizes plant and animal substances (CAM) in turn benefits the immune system. Exercise has some ized herbal preparations. It is used to treat the same brewed into a tea or manufactured into powder or secondary psychological benefits as well. Standard or conventional therapy for brain tumor disorders as acupuncture. Like acupuncture, diagnosis capsule form and taken orally. The goal is to enhance patients usually means surgery, radiation, and/or is based on complex pulse analysis and a physical Exercise can include walking, light weight lifting, or immune function of specific organs, for example, to chemotherapy. Complementary medicine is used in examination; however, needles are seldom used. It is oriental practices such as Tai Chi, yoga, or qi gong. decrease liver toxicity after chemotherapy. In order to addition to standard therapy. Alternative medicine is difficult to find qualified practitioners because ayurvedic Tai Chi and yoga postures may enhance the immune avoid unsafe herb-drug interactions, commu­nication used instead of standard therapy. A simple definition physicians are not yet licensed in the United States. system. Qi gong postures may improve specific physi- between the CAM provider and physician is strongly of CAM is anything people do other than conventional ological weaknesses. It is important to consult with a recommended. It is also important for the patient to Chiropractic therapies to maintain or achieve good health. Integrative doctor before beginning any exercise regimen. be monitored by a board certified herbalist and to use Chiropractic involves the adjustment or manipulation medicine is a combination of conventional medicine only quality-controlled herbs. The patient should always of spinal vertebrae. This treatment may return balance with complementary and/or alternative therapies. Guided Imagery make sure that herbs prescribed conform to Good to the CNS to enhance immune function and decrease This involves using visualization, or mind over matter, Manufacturing Practice (GMP) standards. GMP is the The goal of CAM is to enable patients to tolerate higher inflammation. Chiropractic is primarily used to treat and effectively enhances immune function. There are FDA’s current requirement to regulate quality of herbal doses of standard therapy at closer intervals with fewer body pain, headaches, anxiety, insomnia, constipation, two types of guided imagery: suggestive, where the substances. Patients should tell their medical providers side effects. CAM also aims to increase the quality of diarrhea, neuropathy, and muscle weakness. patient externally or internally guides the immune about any herbal medicines or supplements they are life both during and after treatment. It is important to system to perform specific tasks, and interactive, where taking. integrate CAM into conventional medicine safely, under Diet and Nutrition the patient is externally guided to communicate with the supervision of a CAM health professional. The purpose of altering the diet is to provide additional the disease to gather information from the unconscious. Homeopathy energy for immune function. Basic alterations frequently The patient tries to understand why the disease is pres- Major Systems of CAM Homeopathy involves the ingestion of modified or include an emphasis on organic “whole” (unprocessed) ent, what it wants, and what it needs to make it go away. watered down viruses and bacteria believed to carry There are countless CAM therapies available today. The foods, and avoidance of refined sugar, dairy, and/ an energetic imprint of the original substance. This is major systems of CAM include: acu­puncture, ayurveda, or acidic and spicy foods. Meat intake is minimized; Healing Touch similar to vaccination. The goal is to gently inform the chiropractic, diet and nutrition, exercise, guided imagery, however, fish may be substituted. There is a need to Healing touch involves the laying on of hands by a body of a foreign pres­ence so that the immune system healing touch, herbal medicine, homeopathy, massage maintain adequate protein intake. qualified practitioner. The goal is to detect and correct will attack it. Homeopathy is used to treat most major therapy, meditation, and nutritional supplements. imbalances in body temperature and energy fields, Several types of diets exist. They range from macro- symptoms and disorders. While homeopathic remedies known as chakras, through the practitioner’s palms. Acupuncture biotics, which is based on Asian medical principles, are readily available, one should not attempt to self- There are several types of healing touch, including Acupuncture, which was developed in China, involves to ayurvedic diet, which is based on Indian medical treat. Licensed doctors of homeopathy are common therapeutic touch and reiki. the painless insertion of disposable, hair-fine needles principles, to blood type diets, which are founded on throughout the United States. into various points on the surface of the body. It may Western medical principles. It is recommended that increase circulation, activate the immune system, relieve

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Meditation might try one of the various types of meditation. This is a process of clearing the mind so that one can An intellectual who wants to be more physical 6. Symptom Management achieve relaxation. Meditation generally involves spend- could try reading exercise books, then exercising ing time sitting or lying comfortably and quietly in a way consistent with what he or she learned and breathing deeply. It is extraordinarily effective about appropriate exercise. A spiritual person who The following chapter includes explanations of different symptoms and side for reducing stress. Meditation has been used for needs to be more physical might try yoga or Tai thousands of years with no adverse effects. There are Chi, since such exercises are essentially moving effects that can be caused by a brain tumor or its treatments. Learning to various types of meditation including transcendental, meditation. manage symptoms will contribute to an overall better quality of life. shamanic, guided, and others. Choosing a Practitioner When a person is choosing a CAM practitioner, it is This chapter also discusses some of the various medica- the limb(s). The exercises and positioning are commonly Nutritional Supplements important to determine his or her validity. Look for tions a doctor may prescribe to manage brain tumor shown to the patient by a physical or occupational There are a variety of substances (vitamins, minerals, licensed and/or board certified nutritionists and symptoms and treatment side effects. Doctors and therapist. etc.) that may strengthen the immune system and/ prac­titioners of acupuncture, homeopathy, and Oriental nurses can provide patients with guidance for coping or organ function. Two major types relevant to brain In addition to exercises, there are many assistive devices medicine. People can also ask their doctors for personal with symptoms and side effects, and can also refer tumors are antioxidants (organic substances that to help with mobility, low vision, and functioning recommendations. patients to other specialists within the health care counteract the damaging effects of oxidation in living around the house. Handrails and grab rails, and bath or system, including pharmacists, psychologists, and social tissue) and COX-2 inhibitors (drugs that block an One way to test the knowledge and honesty of a shower chairs are some of these assistive devices. There workers. enzyme which causes inflammation). However, some practitioner is to ask a complex medical question to are several innovative assistive devices to help with nutritional supplements have negative in­teractions with which the patient already knows the answer. Observe eating and dressing, as well as aids for poor vision. certain Western medicines and therapies. For example, the practitioner’s response. Patients should follow their Physical Symptoms There are also assistive technology and accommoda- antioxidants can reduce the effectiveness of radiation instincts on how they feel about the practitioner. Brain and spinal cord tumors can affect parts of the tion products that can help maintain computer access and/or chemotherapy treatments. Use of nutritional central nervous system that control movement, physi- and independence. Federal and state programs exist supplements requires supervision by a board certified cal sensation, the five senses, and motor skills. Some that link people with disabilities to services, technol- herbalist or nutritionist. The doctor should be aware of physical symptoms may include: ogy, and funding to allow them access to assistive any nutritional supplements a patient is consuming. • Hemiparesis (numbness, weakness, or paralysis on technology. Ways to Approach CAM one side of the body) For more information about federal and state There are three aspects to our being: body, mind, and • Difficulty with balance programs and assistive technology resources, see spirit. A full program of healing must incorporate all the U.S. government benefits website at www. • Visual and spatial disorders three aspects, with a slant toward the patient’s person- govbenefits.gov, or www.abledata.com. ality. To figure out the best approach, people should • Bowel and bladder dysfunction ask themselves three questions: People with any of these symptoms may benefit from Medication Tips one of several forms of treatment available at rehabilita- • What kind of person am I? tion centers. Physical and occupational therapists are • To prevent harmful drug interactions, tell your Three personality types are kinesthetic (or experts in rehabilitation. Occupational therapists teach doctor about any medications you may be physical), intellectual,­ and spiritual. patients how to manage their side effects so that they taking, including over-the-counter drugs and can go about their lives and perform daily activities. herbal supplements. • What did I like to do prior to diagnosis (i.e., Physical therapists help patients improve their walk- occupation and hobbies)? • Medications should always be taken as ing, balance and strength. Every person with a brain A kinesthetic or physical person might like cooking directed. tumor deserves to function optimally, so patients need or exercise. An intellectual might prefer reading to be evaluated for the appropriate rehabilitation and • If you experience side effects with any or psycho­therapy. A spiritual person may enjoy treatment. medication, report them to your doctor meditation or practicing yoga. right away. If permanent mobility problems occur there are several • How can I combine my talents to achieve my options to continue with a good quality of life. Regular • Never stop taking medications without first health goals? range of motion exercises to the affected limb and talking to your doctor. A physical person who wants to be more spiritual proper positioning help to decrease pain and freezing of

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Cognitive and Behavioral Symptoms mental and behavioral abilities. This evaluation helps to Seizures identify the areas of the brain that have been affected “Knowing that you aren’t alone has been, in my A brain tumor or its treatment(s) can cause changes to A seizure is a sudden attack or con­vulsion caused by by the tumor. Although neuro­psychologists are often not expe­rience in talking with many other patients, a person’s cognitive (thinking) abilities, behavior and/ an abnormal, uncontrollable burst of electrical activity consulted until after treatment, it may be preferable to the single most significant factor in improving or emotions. Patients may experience difficulties with in the brain. It can cause a range of reactions, from have a neuropsychological evaluation before treatment. a person’s attitude, and taking away some of language use, attention and concentration, learning muscle contractions, staring, and tongue biting, to loss That way, a more accurate comparison can be made of the fear.” and memory, general intellectual abilities, executive of consciousness. changes that may occur following treatment. –Libby Stevenson, brain tumor advocate functioning, and emotions. After analyzing the results of the tests, the neuropsy- Seizures are a common brain tumor symptom, occur- • Language: difficulty speaking, writing, and/or chologist can make recommendations for rehabilitation, ring in 60 percent of all brain tumor patients. Seizures reading therapy, or medi­cations to help patients regain as also be taught how to modify the patient’s lifestyle to may be the first indi­cation of an abnormal growth. much function as possible. For example, stimulants help compensate for difficulties. Some people only experience one seizure while others • Attention and concentration: being easily such as methylphenidate (Ritalin) may improve suffer from reoccurring seizures, or epilepsy. Seizures distracted, confused, and disoriented; difficulty cognitive function. A neuropsychologist may offer Headache are common with slow-growing gliomas, meningiomas, doing more than one task at a time training in compensation techniques for the mental and metastatic brain tumors. Headache is a common initial brain tumor symptom. • Learning and memory: short-term memory loss, and/or physical abilities that cannot be fully regained. The types and qualities of headaches patients experi- Seizures can be dangerous to patients, and certain slowed thinking Neuro-oncologists or neurologists can give a referral ence depends on the type and location of the tumor. precautions should be taken to avoid injury. For the sake to a neuropsychologist. Re­ferrals can also be found in of safety, people who experience uncontrolled seizures • Executive functioning: difficulty with problem The typical brain tumor headache is described as rehabilitation settings. are restricted from driving a car or motor vehicle. There solving, judgment, and multi-tasking (doing more severe, worse in the morning, and associated with are many differences in the laws regarding driving than one thing at a time) Cognitive Rehabilitation other neurological symptoms such as nausea or restrictions in the United States. Two basic approaches Cognitive rehabilitation is designed to help people regain vomiting. Many patients have tension headaches; a • Emotion and personality: depression, irritability, are used to determine if a person is allowed to drive: 1) as much of their mental, physical and emotional abilities smaller number have migraine headaches. anxiety, mood swings, obsessive-compulsive the person must be seizure-free for a specific period of as pos­sible. When full recovery is not possible, treatment tendencies, dis­inhibition, and withdrawal Headaches are often due to edema, swelling of the time (usually 3, 6, or 12 months), or 2) a physician or includes compensation techniques. These are methods brain caused by the tumor. Steroids such as dexa- medical advisory board evaluates the person and makes The symptoms will vary depending on where in the to develop other skills to make up for those that have methesone may be prescribed to reduce edema. This a recommendation. The evaluation methods are not brain the tumor is located and what method of treat- been lost. Therapy can include tasks and exercises to decreases the headaches by relieving the pressure. standardized, so they vary from one doctor to another. ment is received. These difficulties may affect a patient’s strengthen sight, speech and movement. Compensa- Surgical removal of the tumor will often relieve head- ability to work or go about his/her daily life. This can tion techniques include learning to live with memory Some states require doctors to report patients who aches as well. However, after surgery some patients cause a strain on both the patient and his or her family loss by keeping calendars and organizers. If a patient experience seizures to motor vehicle agencies. Some may experience post-operative headache. This may members. experiences major behavioral and personality changes patients may not tell their doctors about their seizures be a tension headache with lo­calized pain around the including impulsiveness, frustration, and frequent mood because they are afraid that they will lose their driving surgical site. Pain of this source is often relieved by Neuropsychological Testing changes, he or she may benefit from counseling, anger privileges. This is dangerous because the patients’ analgesics (pain kill­ers). Once the initial post-operative Neuropsychological testing is the method used to management training, or medication. For people who seizures will go untreated. Whether or when driving headache is relieved, most patients do not experience identify changes in the cognitive functioning of a patient. experience serious loss of mental or physical abilities, privileges are restored depends on whether the sei- more headaches. The return of head­aches can be a sign A series of tests conducted by a licensed neuropsy- cognitive rehabilitation therapy will be provided at home, zures can be controlled. However, patients should report of recurrent edema or tumor growth. This may indicate chologist can assess the patient’s emotional state, and work or school. Caregivers and/or family members will seizures in all cases. Check with your state department the need to be evaluated for tumor recurrence. of public safety for more information regarding local Some patients will begin to experience headaches near laws. What is a neuropsychologist? the end of life. In these instances, palliative steps are A neuropsychologist is a licensed psychologist who has specialized training and experience studying how the taken to relieve symptoms and increase the patient’s brain functions. A neuropsychologist does testing and research to attempt to explain the relationship between comfort. “I attribute my survival to being willing to take brain activity and behavior, and to understand how functions within the brain influence thinking, learning Headaches are rarely persistent in brain tumor pa- risks on unconventional therapies, being willing and emotions. He or she studies the impact that brain damage has on a person’s functioning and abilities. A tients. When patients continue to have head­aches, they to think outside the box and being willing to say neuropsychologist can help brain tumor patients and survivors evaluate changes resulting from their brain need to be carefully evaluated and treated specifically I want to try something different.” tumor or treatment, and can help develop a plan for rehabilitation. for the pain in order to maintain a good quality of life. –Glioblastoma survivor

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There are two common types of seizures associated with and legs, loss of consciousness, then twitching and becoming aware of personal energy level patterns, brain tumors; partial (focal) and generalized seizures. relaxing of muscles. Other symptoms include tongue patients can perform their daily activities at these times. biting, incontinence, and shallow breathing. The seizure Keep a list of all medications, including They can also learn to conserve energy and develop Partial Seizures usually lasts two to three minutes at the most, and will over-the-counter products. Keep track ways to use their limited amount of energy efficiently. Partial or focal seizures result from a tumor affecting one cease by itself. Afterward, the patient may experience Organizing their home and time, using devices such part of the cerebral hemisphere. There are two types limpness, sleepiness, headache, confusion, or sore of symptoms that are possible side as grab rails and extension handles to assist with basic of partial seizures: simple partial seizures and complex muscles. Generalized seizures may or may not begin as effects. These are important ways to tasks, asking for assistance from others, and resting partial seizures. partial seizures. when necessary are some ways to manage fatigue. help your doctors recognize possible Simple Partial Seizures Medical treatment for fatigue has shown varying Antiepileptic Drugs (AED) Simple partial seizures do not cause altered conscious- drug interactions. results, depending on the cause. A low red blood cell Medications that are used to control seizures have ness. They can cause involuntary jerking, twitching, count (anemia) is one cause of fatigue. For this, a several names: antiepileptic drugs (AEDs), anticonvul- tingling or numbness in one part of the body, buzzing in patient may be put on medication to help produce more sants, antiseizure drugs, and epilepsy drugs. A patient the ears, chewing or lip smacking, sweating, and dilated red blood cells. When a patient experiences severe may be put on AEDs if he or she expe­riences a seizure Other anti-epileptic drugs are available, including pupils. The seizure can be short or may last for an ® ® fatigue, the doctor may prescribe a drug to stimulate or as a precautionary measure. If the patient has not carbamezepine (Tegretol ), gabapentin (Neurontin ), extended length of time. An example of a focal seizure ® ® alertness. Studies using methy­­phen­idate or modifinal experienced seizures or if the patient is seizure-free for tigabine (Gabitril ), and valproate (Depakote ). A patient could be jerking of one arm, or a strange sensation in show varying results, but may be worth considering. an extended period of time, the AED may be tapered should ask his or her doctor for more information about one hand. off. AEDs should never be stopped abruptly. The type these medications. and amount of medication is based on the level of Blood Clots (Thrombosis) Complex Partial Seizures One concern when taking AEDs is the possibility of inter- seizure control needed and the side effects from the Complex partial seizures, asso­­ciated with dysfunction actions with other drugs. Many medications will either Patients with glial tumors expe­rience an increased medication. of the temporal lobe, altered loss of consciousness. A increase or reduce the effect of AEDs. Specifically, some production of clotting factor in their blood. This can patient may be aware of his or her surroundings but Some of the more common AEDs are lamotrigine (Lamic- chemo­therapy drugs prescribed to brain tumor patients cause deep vein thrombosis (DVT). DVT is a condition unable to speak before, during, or after the seizure. Ad- tal®), levetiracetam (Keppra®), phenytoin (Dilantin)® and may interact with AEDs. The most commonly used AEDs in which blood clots form, often in the legs. The clots ditional symptoms that may follow this type of seizure toiramate (Topomax®). are metabolized (absorbed) through a specific path­way block one or more veins, disrupting the blood flow. are confusion and hallucinations (imagining sights, in the bloodstream. Many other drugs are metabolized Some possible side effects of AEDs include loss of bal- Common signs of DVT are tenderness or pain in the calf, odors, and sounds). These seizures may last for several through the same pathway. The various drugs compete ance, fatigue, jerking eye movements, itching, and skin behind the knee, or in the thigh. There may be swelling minutes before the patient returns to full awareness. with each other. This changes the effectiveness of either rashes. A rash is an allergic reaction, and the patient in one leg, particularly the weaker leg, and/or pain in the or both drugs. Blood tests and other methods are used Generalized Seizures must be seen by a doctor immediately. It is important leg where it is pressed or when the foot is flexed upwards to monitor possible drug interactions. Generalized seizures are also called tonic-clonic or to remember that side effects of these AEDs vary greatly towards the face. Another symptom is hemiparesis grand mal seizures. They begin with a sudden attack or from person to person. If side effects are a serious (partial paralysis), particularly in the affected leg. DVT loss of physical control that can cause flailing of arms problem, a doctor may change a patient’s medication. Fatigue can cause loss of mobility, resulting in being confined to bed for a short period of time. Fatigue can vary from a feeling of tiredness to total Helping Someone Who is Having a Seizure exhaustion. It can limit a person to accomplishing no On rare occasions, blood clots in the leg may break more than one activity a day. Fatigue is not relieved loose and travel to the lungs, where they can block If someone is experiencing a seizure, stay with the person and allow the seizure to pass. Make sure the person by a good night’s sleep. It can last for a short period of one or more blood vessels. This is called pulmonary is breathing. Remove harmful objects around him or her to prevent injury. Do not put anything in the person’s time or for many years. It can be the initial symptom embolus (PE). PE can happen suddenly and can be life mouth. If the person is having a grand mal seizure, try to protect the head from banging or getting bumped. of the brain tumor, and is a common side effect of threatening. Help the person lie on his or her side if possible. Call for emergency help if the person is having trouble breath- surgery, radiation therapy and chemotherapy. Fatigue is ing or is injured. Time the seizure. If the seizure lasts longer than five minutes or if a second seizure follows the considered one of the most debilitating symptoms and first one, call for emergency help. side effects of a brain tumor because it limits a person’s degree of physical activity. “Finding little solutions that increase my stamina Patients who suffer from multiple seizures should keep a journal of when and for how long the seizures occur is satisfying and gives me some sense of so that the doctor can identify a pattern. Seizures may be triggered by alcohol use, physical or emotional stress, The most common way to manage fatigue is to control.” other illnesses that put a strain on the body (such as colds or flu), or a change in medications that can alter understand how and when fatigue occurs and to plan –Anaplastic Oligodendroma survivor levels of antiepileptic drugs. daily activities according to energy levels. Most people experience high energy at certain times of the day. By

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Symptoms of PE are shortness of breath, chest or back doctor may prescribe laxatives. When constipation pain, an onset of fatigue, persistent cough, sweating, arises, ask the doctor or nurse to develop a plan so it will 7. Survivorship rapid heart rate, heart palpitations, anxiety or restless- not alter quality of life. ness, and change of color in the lips or nails (they may become pale, blue, or purple). Hormonal Changes Patients diagnosed with brain tumors go through a very difficult and life- Changes in hormones and endocrine function may Several methods are used to prevent DVT from occur due to tumors in the hypothalamus, pituitary threatening experience. This chapter examines what it means to be a brain occurring. After surgery, brain tumor patients wear or pineal glands, or as a delayed effect of radiation pneumatic compression stockings, which stimulate the therapy. Patients may experience changes in their tumor survivor. muscular action of the legs to keep the blood flowing. estrogen, pro­gesterone, testosterone, growth, thyroid, Post-surgery patients are encouraged to get out of or steroid levels. This can be a disturbing, chronic prob- bed and walk as soon as possible. Physicians may The brain is the essence of who we are. It controls our ments may fail the patient, but the patient never fails the lem that causes mood and personality changes and have nurses or physical therapists teach patients leg thoughts, emotions, communication, movements, and treatment. This is why the National Coalition of Cancer sexual dysfunction. These conditions require specialized exercises while in the hospital. In addition, patients may organ functions. Survivorship (NCCS) introduced the following definition treatment and monitoring by an endocrinologist. of survivor, “From the moment of its discovery and for receive a small dose of heparin or a heparin derivative to A brain tumor diagnosis usually turns the patient’s world the balance of life, an individual diagnosed with cancer thin the blood and prevent the formation of blood clots. Depression upside down. For everyone involved, the brain tumor is a survivor.” DVT and PE may occur after hospitalization, espe- Depression is common in people with brain injury, experience is a journey into an unknown land filled with including tumor, stroke, or head injury. Symptoms cially due to decreased physical activity. Patients and uncertainty. Through the diagnosis, treatments and You are a survivor—from the moment of your brain can include decreased pleasure in usual activities, caregivers need to be aware of the symptoms. Call the follow-up visits, there’s much to learn and cope with tumor diagnosis until long after treatment ends. How decreased concentration, apathy, withdrawal, and mood doctor immediately if any of the symptoms mentioned physically, emotionally, and spiritually. does that feel to you? It is important to know that not swings. While many of these symptoms can also be above are present. Patients may want to know when treatments will end, everyone takes on this definition. “Survivorship” is a attributed to a tumor, depression can and should be symptoms will stop, and when or if they will be healthy dynamic process, and everyone deals with his or her treated. Treatments include anti-depressant medica- again. At some point, patients will usually ask the brain tumor differently. You may feel uncomfortable Other Symptoms tion and counseling with a psychologist, social worker, question, “Will I survive this disease?” and “When will I calling yourself a survivor after your treatment ends, or or clergy experienced in working with patients with Nausea and Vomiting know that I’m a survivor?” you may wait until you are disease free. You may use the life-threatening illnesses. Nausea and vomiting may occur in patients with cer- term when you feel some normalcy in your life, or avoid ebellar or brain stem tumors and in patients undergoing “Survivor” Defined the term altogether. chemotherapy. Anti­nausea medications called anti- emetics are available for people who experience nausea What is the definition of a brain tumor survivor? Before Stages of Survivorship the 1960s, the term “survivor” was primarily used for and/or vomiting. A doctor can explain the options. Brain tumor survivorship involves much more than family members whose loved one died of cancer.* The the label “survivor.” Survivorship is an ever-changing definition changed when patients began living longer Constipation process, an experience of living with, through, or beyond due to new radiation and chemotherapy treatments. The Constipation is a common side effect of chemotherapy. brain tumor disease. The concept of survivorship medical community began to use “survivor” to describe The doctor or nurse will work with patients to address includes everything in life that changes as a result of the those who lived for at least five years after their this problem. Adding fiber to the diet and increasing diagnosis and its aftermath. Many patients struggle to diagnosis or the end of their treatment. physical activity are common methods used to alleviate make sense of the changes and to feel a sense of order constipation. If there is no relief with this regimen, the This definition is not accurate for patients who may live in life. Fitzhugh Mullan, MD, a physician and cancer more than five years, but are not cured. Some patients survivor, wrote an essay entitled “Seasons of Survival: may go into remission, requiring treatments many years Reflections of a Physician with Cancer.” In it, he inserts

“I eventually came to the realization that the later. It is wrong to suggest that some patients triumph, some structure into his cancer experience by proposing whole process was not just about avoiding pain and others lose the battle against brain tumors. Treat- the following three survival stages. and making my tumor go away, but was about enjoying and savoring life. When I started living my life that way, amazing things happened.” * Editor’s Note: This chapter makes several references to cancer. That is because sources for this article included the National Coalition of Cancer Survivorship and the National Cancer Institute, as well as cancer patients and survivors. Not all brain tumors are malignant. However, because of the –Meningioma survivor unique nature of brain tumor disease and its consequences, we feel that the information presented here is relevant to all brain tumor patients and survivors, including those with a benign diagnosis. Please keep this in mind as you read through the chapter. It may be helpful in places to substitute the words “brain tumor” for the word “cancer.”

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Acute Stage • Physical factors including age, gender, type and nized, those mourning go through the following steps: and improved ability in relating to others. A long-term Acute stage includes the time from diagnosis through the stage of brain tumor, treatments, and progression accepting what has been lost, experiencing the pain glioblastoma survivor describes positive changes coming beginning of treatment, when the focus is on the physi- of disease. Children older than age three tend to associated with the loss, adjusting to the new environ- from his journey: have a higher survival rate than infants, and adults ment, and moving on. cal disease. Patients and caregivers struggle to navigate “It was five years ago when I was diagnosed with a brain below the age of 45 do better than older adults. their situations and may rely heavily on their oncologists Several studies and surveys show that survivors need tumor and, based on statistics, given a rather dire progno- Tumors that are slow growing generally have a (or neurologists) for information. Supportive services like emotional support, especially reassurance. Many brain sis. The irony is that I, like others in a similar situation, have better prognosis than aggressive tumors. health care professionals and family support systems tumor patients welcome the opportunity to express come to refer to my disease as a gift because it was a wake- are widely available to help patients through this process. • Side effects such as cognitive disorientation, themselves and share their experiences. Caregivers and up call. And it was not, ‘Hey, wake up, you’re going to die.’ physical limitation, disfigurement, and disability. In friends can play an important role by educating their It was, ‘Hey, wake up, you are alive.’ Wake up and recognize Extended Stage general, less severe side effects allow for a better loved ones about the grieving process and by encourag- the preciousness of this moment and all the wonderful Extended stage begins when and if the patient quality of survivorship. ing them to verbalize their feelings. Many patients and moments life so generously and graciously gives you.” responds to treatment. Patients and caregivers may their families benefit from attending support groups. feel positive yet uncertain. Fear of recurrence is often • Psychological factors influenced by age, previous NBTS can help you locate a brain tumor support group Remaining Hopeful present. Recovery focuses on the physical, emotional, experience with illness, psychological strengths Brain tumor patients have a right to remain hopeful in in your area. and psychological effects of treatment. Mixed emotional and weaknesses, coping mechanisms, prior history the fight against their illness and its aftermath. Hope is extremes are common. Medical services are no longer of depression, anxiety and other mental health Post-traumatic Stress Disorder and Post-traumatic a powerful concept and coping strategy that empowers available on a regular basis. Patients and their families issues, self-esteem, and personality traits like Growth patients to look beyond the moment and into the future. usually rely on community and peer networks for independence and motivation. These factors affect Some brain tumor patients may perceive their diagnosis One brain tumor patient expresses the importance he support. a person’s outlook on life. and its accompanying treatments as a traumatic event. places on a positive outlook: • Social factors including race, gender, ethnicity, Post-traumatic Stress Disorder (PTSD) is a term for an Permanent Stage “I have no question that the mind-body connection is religious orientation, education level, employment anxiety disorder that may result from a severe trauma. very real and can affect the outcome of our illness. I do Permanent stage refers to the long-term stage of history, financial stability, available social support, The diagnosis of a life-threatening illness or learning of not intend my outcome to be translated as a cure. Some survival, when a level of trust for health and life returns and the patient’s role in his or her family, such one’s child’s diagnosis can be traumatic. Symptoms people will get better while others will have periods of to the patient. The outside world praises the patient for as being a spouse, parent, or child. Social factors of PTSD include fear, helplessness, and horror, re- remission. Whatever time remains—and I base this on his or her recovery. However, the patient must manage affect a person’s ability to get health care as well as experiencing the event, avoiding reminders associated many, many conversations with patients as well as my own the long-term physical and psychological effects of the quality of care. with the event, and increased stressful responses for at experience—it will be higher quality if we engage our the disease. Survivors may require continued care by least one month. mind’s ability to affect our attitude.” specialists with knowledge about long-term and late effects of their disease and its treatments. Dealing with Emotions and Grief Studies suggest that some pediatric brain tumor survi- However, hope does not necessarily translate into being vors, their parents, and adult survivors experience PTSD. cured. Kendra Peterson, MD, a neurologist with much The process of brain tumor survivorship involves many Brain tumor patients experience different types of Brain tumors are unique from other traumatic stresses experience working with brain tumor patients, explains: feelings: anger, sadness, cognitive fatigue, the fear of loss throughout their journey: from the loss of hair, to because of the neuro­log­ical effects and the uncertainty “It is important to explore what other things a patient seizures, and the hope that treatment will destroy the the loss of various levels of cognitive functioning, the of recurrence. If you think that you might have PTSD, you hopes for, for example: freedom from pain or other brain tumor and enable the patient to reclaim his or ability to take part in certain activities, relationships, should consider seeing a psychologist who can provide physical symptoms, maintaining maximum independence her life. self-esteem, and innocence. People affected by brain you with a clinical diagnosis and professional assistance tumors often endure emotional pain and suffering from for as long as possible, participation in a par­ticular family Survivorship can teach a new appreciation of the world, through your trauma. these losses. Relaxation activities like deep breathing, event or gathering, making peace in a troubled relationship, oneself, and others. The awareness of the imperma- Post-traumatic Growth (PTG) is a term for the positive imagery, meditation, and light exercise can help ease dying with dignity or dying at home. What people hope for nence of life can make it much more precious. And life changes that can come from trauma. PTG is consid- stress. Survivors with severe emotional stress should frequently changes throughout their lives and at the end of even when a cure is not possible, there may be an ered to be the opposite of PTSD. For some patients and consider seeking assistance from a mental health life, but rarely do they stop hoping.” opportunity for healing. Treatments focus on the elimi­ caregivers, the brain tumor experience inspires them to professional. nation of disease, while healing focuses on psychologi- question their beliefs, attitudes, life goals, and relation- Support Groups cal and spiritual wellness. Intense emotional suffering caused by loss is called ships. This period of re-evaluation, which can at first A support group is a meeting of patients, family mem- grief. Processing grief can be a long journey for patients be traumatic, may ultimately create positive changes. bers, and others, who are dealing with the same issue Influences on Survivorship and caregivers. Hidden grief can manifest itself Studies suggest that brain tumor survivors who or illness. Support groups are usually led or facilitated There are several key factors that may be related to in emotions like anger, guilt, anxiety, helplessness, endure trauma grow from their ordeal. Specific areas by a health professional, such as a social worker, brain tumor survivorship: and sadness. Everyone grieves in his or her own way. of PTG include appreciation of life, personal strength, psy­chologist, or nurse. Support groups can be in person However, psychologists believe that once grief is recog-

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(often held at a hospital) or online, where members Some patients do not want to receive treatments far • Ask if your doctor works with a health care communicate by email. from home. A second opinion from a major oncology provider, such as a nurse practitioner or Medical records patients should center can confirm the best local treatment plan. physician’s assistant, whom you can contact if Support groups serve several functions. They give keep your doctor is unavailable. patients and families opportunities to talk with knowl- Tips for Doctors’ Appointments • The type of brain tumor you were diagnosed edgeable people, including health care professionals, • Express yourself clearly and directly, and ask Doctors’ appointments can be very stressful for patients with and copies of pathology reports who can educate them and provide information about for what you want or need. Let the doctor know and caregivers. The exchange of information can be their disease. Support groups let individuals know that when you have heard enough or want more • Date of diagnosis and treatment history, more difficult than most people realize. Here are some they are not alone. They provide a chance to talk with information. Ask for additional resources on including sur­gical reports, sites and levels of tips to help you get the most out of these important people who are in or have survived similar situations. specific topics. radiation, types and amounts of chemotherapy meetings: Support groups can offer emotional support and practi- and any other drugs, lab reports, and doctor • Repeat what you heard the doctor say, and ask cal experience to help cope with the crisis of a brain • Take someone to medical appointments that can and hospital names with contact information ask the doctor questions, understand what was him or her to explain things in simpler terms if tumor diagnosis. And support groups can smooth the • MRI reports, and copies of scans if possible you don’t understand. transitions that patients and families must make as they talked about during the appointment, and discuss it with you afterwards. deal with unfamiliar environments, such as hospitals • As a last resort, consider finding a new doctor if and outpatient clinics. • Keep a notebook with questions and concerns, and your needs are not being met. write down notes from the meeting. medical decisions. This information can be organized Support groups are free of charge. Most of them have NCCS has a free resource available called in a notebook, portable file holder, or even a binder no requirements about regular attendance or participa- • Take a tape recorder and ask the doctor if you may Cancer Survival Toolbox. It has information about dedicated to medical history and records. It should be tion. People can choose to come or not, stay as long as tape the conversation. com­municating, finding information, making shared with new doctors. decisions, solving problems, negotiating, and they like, and feel com­fortable about participating or • Request to meet with the doctor in a private room standing up for your rights. Contact the NCCS Patients have the right to see and to get access to their just listening to others in the group. Support groups with the door closed. This is especially important at 1 877 NCCS YES (1 877 622 7937), or visit medical records. The process of viewing medical records are not all the same. Some can be intense and emo- for brain tumor patients, who may be more easily www.canceradvocacy.org. involves signing a release form. Fees may be charged tional, others fun and energizing. distracted than other people. for copies of records and scans. Get copies of films, Support groups are not for everyone—at least not • Tell your doctor at the beginning of the meeting Specific Questions about Follow-up Care disks, and reports as soon as possible. The best time consistently for everyone. It depends on the person if you have several questions, and ask the most After treatment, patients need monitoring or follow up to request these copies is when the tests are first given. and his or her particular feelings at any particular time. important questions first. Ask the doctor to with a member of their medical team who knows the Take your medical records with you to appointments. However, when a person and family have to face the schedule a longer appointment for next time if original diagnosis and treatment history. This person Keep du­pli­cates for second opinions and in the event diagnosis of a brain tumor, it is important to realize that necessary. Ask when you can talk on the telephone can determine how often and for how long follow-up that your copies should get lost in the mail or elsewhere. everyone involved may benefit from having someone about your immediate questions if there is not care will be necessary. to talk with. It is often important to have a person who enough time during the meeting. Health Insurance, Costs, and Financial Assistance is not emotionally involved who can offer an outside Important questions to ask your neurosurgeon, neuro- Brain tumor treatments, tests, and doctors’ appoint- perspective. National Brain Tumor Society (NBTS) oncologist, or neurologist about follow-up care: ments can be a financial burden for patients and their always recommends counseling, whether one-on-one or • How often should I see you or other members of families. It is extremely important for patients to have for the family. my health care team for follow-up visits? health insurance that will offer some medical coverage.

To see if there is a support group in your area or • What follow-up tests should be done and how Patients may want to ask a caregiver, family member, or for information about online support groups, visit often? close friend to help them manage their health insur- our website at www.braintumor.org. ance. Having a designated health care advocate can • What symptoms should I be concerned about? make a big difference in the type and quality of care a patient receives. Because there are so many different • Who should I contact if I develop those Managing Follow-up Care types of health insurance plans, it is important for symptoms? patients and their caregivers to understand the scope Brain tumor patients need to receive the best quality of their insurance coverage. Your insurance company of care available. Quality care may be found at local Medical History and Records can provide answers to questions about your policy hospitals or may require travel to a well-known brain Patients and their primary caregivers need to have basic and available coverage. Your state insurance office has tu­mor treatment center, depending upon the diagnosis. Members of the Sacramento area Brain Tumor Support Group staff an knowledge about tumor type and treatment history. It information about how and where to get new insurance. information table at a resource fair. empowers patients and their caregivers to make better

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Sometimes coverage is denied by health maintenance • When accepting a new job or going back to manent kidney failure, and disabled people under the organizations (HMOs) or employer-sponsored plans. an old one, be honest about your needs and age of 65. Disabled applicants must have been receiving There is usually an opportunity to appeal the decision expectations. Social Security Disability Insurance (SSDI) benefits for 24 by making claims such as medical necessity. Even months to qualify. The Medicare hotline has information • Organize your environment so that it helps you simple claims that were processed incorrectly may about state counseling and assistance programs and do your job well. You might want to arrange an require several phone calls and letters to resolve, which about the Health Insurance Portability and Accountability enclosed workspace and use ear­plugs to avoid takes time and energy. At times like these it is especially Act (HIPAA) of 1996. HIPAA is a law that offers pro­ distractions. It might help to create checklists, keep worthwhile to have a caregiver, family member, or close tections against employers who exclude employees from a calendar of appointments, and employ auditory friend who can assist with insurance issues. Patients group coverage or who increase in­surance costs because and visual cues such as appointment reminders may need to reserve their energy for taking care of of an employee’s medical history. from your computer or color-coded files. themselves and getting stronger. Call 1 800 MEDICARE (1 800 633 4227), or visit • Relearn tasks through repetition and modeling. For more information about insurance and www.medicare.gov or www.cms.gov. coverage issues, visit www.braintumor.org. • Prioritize work assignments. Social Security Administration • Understand your limitations and adapt. The Social Security Administration offers two programs Returning to Work • Work with your employer to make reasonable for people with disabilities: Social Security Disability The period after diagnosis and during treatment can accommodations in the workplace. Insurance (SSDI) and Supplemental Security Income involve changes when patients and their caregivers (SSI). Both programs define a person with a disability redefine expectations and family roles. Brain tumor Americans with Disabilities Act as someone who is unable to perform any “substantial patients may leave their jobs or reduce their work The Americans with Disabilities Act of 1990 (ADA) pre- gainful activity” (work) because of a mental or physical hours during this period. Later, many patients can and vents job discrimination for individuals with a qualifying impairment. The impairment must be 1) medically do return to work. Other brain tumor patients, however, disability. If a person with a disa­bility can perform the documented and, 2) considered terminal, or expected to cannot work at all, or can only handle some of their essential duties of a job, the employer cannot discrimi- keep the person from working for at least 12 months. nate in the hiring process. By law, the employer must former responsibilities. Social Security Disability Insurance (SSDI) is not also make reasonable accommodations for people with based on need. SSDI is based on money deducted Making the Decision disabilities. from a worker’s paychecks. In contrast, Supplemental Your capabilities, needs, and the advice from your Security Income (SSI) is a need-based program. Past physician and neuropsychologist should all be factors Federal and State Disability Programs contributions to the Social Security system do not affect considered when deciding whether or not to return Temporary and permanent benefit programs offer eligibility. to work. Your physical and mental condition are also financial assistance for those who cannot return to important. Your condition will be affected by the size, work. A hospital social worker or local social services For more information about SSI and SSDI, call location, and type of tumor, as well as the treatments agency can provide more detailed information and 1 800 772 1213, or visit www.ssa.gov. received. A neuropsychologist can anticipate problems possibly assist with the application process. you might have at work, and provide strategies to Department of Veterans Affairs help you compensate. The biggest challenge you may Medicaid Veterans Health Administration offers eligible veterans experience when returning to work is that some tasks Medicaid is a state-administered health insurance and their dependents medical treatment based on may be more difficult. program for eligible people below a designated income financial need. Call 1 877 222 VETS (1 877 222 8387), level. It is jointly funded by federal and state govern- or visit www.va.gov. Strategies to help the patient prepare for returning to ments. Each state has different eligibility requirements. work and adjusting after starting: For information on issues related to work and For information about Medicaid coverage, visit disability programs, visit www.braintumor.org. • If necessary, seek cognitive training and www.cms.gov or call your local Department of assistance from a neuropsychologist. This chapter was written with the assistance of Jeannine Social Services. Walston, and we are very grateful for her help. • Consider going back to work part-time to start. Many patients make the mistake of going back to Medicare full-time work too quickly. Medicare is a federal health insurance program for eligible individuals aged 65 or older, people with per-

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Medications 8. Suggestions for Caregivers Keep a list of all medications used, including over-the- counter drugs. Ask the doctor about possible drug interactions. Write down all side effects and note when The caregiver plays an important and complex role. This chapter offers you informed the physician of any problems. suggestions and insights in the hope that they may help the participants Communication re-establish a sense of inner control, develop a new routine, and perhaps Good com­mu­nication with health professionals is es- sential. If something is not clear, ask for an explanation. help create a new “norm” for the life of the brain tumor survivor. Find out which staff member(s) can answer questions when the doctor is busy. Take notes at doctors’ visits. Document the reason for the visit, the doctor’s Caregivers can select the suggestions that are useful to Mitch Golant, PhD, a Los Angeles-based psychologist, responses to questions, any procedures performed, and them. Remember, there is no right or wrong approach defines the caregiver as a strengthened ally who other vital information. Using a tape recorder can be to caregiving. It is important to always remain flexible provides comfort and strength through self-care and very efficient. As a courtesy, ask your doctor first if it’s and creative because the needs of a patient can vary knowledge. He explains that caregivers should nurture okay to record the conversation. depending on the situation. themselves so that they can nurture the patient. In ad- A fundraising walk to support NBTS patient services and research programs. dition to the basics—eating well, getting enough sleep, What is a caregiver? A caregiver is a person who is Treatment and regular exercise—Dr. Golant reminds caregivers of responsible for attending to the needs of a dependent Inquire about other treatment options. Find out how the importance of educating themselves and of setting Advocacy child or a frail, elderly, or disabled adult. Changes in much time you can take to make a treatment decision. limits. When dealing with insurance companies, repeated our health care system have resulted in a shift of care Get the names of specialists the doctor would seek follow up may be necessary to make sure claims get from the inpatient context to the outpatient clinic. This Consider joining a support group. Support groups can advice from if he or she were the patient. Get a second processed and paid. Insurance companies sometimes means that caregiving requires more involvement and provide an encouraging setting where caregivers are opinion right away. deny claims. When this happens, seek assistance responsibilities from the care-receiver’s family. able to come together and share information, vent their from the medical team. The doc­tor can prove medical frustrations, ask questions, and get new ideas. Support Medical Records Everyone is an advocate for patient determination, necessity. The medical center’s billing department can groups are helpful during all phases of the brain tumor Keep a chart for your loved one at home. Keep a copy believing that an illness need not make a patient any also advocate for the patient. journey—at diagnosis, during treatment and recovery, less competent. However, brain tumor disease often of all scans, lab tests, and medical records. These will into survivorship, and beyond. impacts both the physical and mental functioning of be helpful in getting a second opinion, if a complaint should arise, or if there are questions about the pa- Seeking Help the person. Treatments can be phys­ically debilitating, Seek help when you need a break. Help can be sought tient’s medical history. and a patient can become exhausted and vulnerable. in friends, family members, therapists, spiritual advi- Caregivers have to figure out when something is beyond Brain tumor patients can experience changes in mental sors, or counselors. Having a support system is critical their expertise and when to call upon someone else for Resources and Referrals functioning or behavior. When behavioral changes occur, to prevent burn out. help. If the patient is seriously depressed, for instance, a loved one may act in ways that are completely out of If you need financial help or assistance getting access it may be best to seek treatment from a mental health character and sometimes difficult to manage. Therefore, to other resources, contact a hospital social worker. professional. it is important to determine when to allow the patient to Getting and Managing Information Hospital social workers are aware of local resources that might benefit you. Get the name of a helpful social For the patient, a neuropsy­chological evaluation can assert his or her independence and when to intervene. Brain tumor patients often experience changes in worker and always talk with that person. He or she will help un­der­stand the causes of neuro­psychiatric symp- mental functioning and/or behavior. For this reason, a become familiar with your case and can help things go toms such as depression, anger, and mood swings. The caregiver may need to become his or her loved one’s Taking Care of the Caregiver more smoothly. neuropsychologist can offer suggestions for possible advocate and manage the patient’s care. Here are some treatments or other methods to manage the symptoms. Quite often, loved ones are thrust into the caregiver suggestions for information management. For example, some rehabilitation services for head role without preparation. Caregivers need to take care Insurance injury survivors may be applicable to brain tumor of themselves emotionally and physically so that they Diagnosis Challenge your insurance company and your doctors survivors as well. are able to provide the strenuous support and care It is essential to know the patient’s tumor type and to if you think your loved one is not getting the care he or demanded by the patient. As a caregiver, remember the get a written description of the treatment plan. This she deserves. If this is difficult for you, find an advocate Behavioral changes can be temporary, or the loved one basics: eat well, get enough sleep, and exercise. way, the caregiver or patient can clearly describe the in a family member, a hospital social worker, or through may never be the same again. Such changes create diagnosis to other medical professionals. a patient advocate organization. feelings of loss and are a source of grief for the family.

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and lay clergy for advice can be a great source of Dealing with legal and financial matters is a must. In the Caregiver Checklist comfort, but only if your loved one welcomes this. words of one caregiver, “Check your financial situation Changes in Behavior and including wills and life insurance immediately upon 3 Caregivers need to tend to their own spiritual needs as Personality ¨ I eat three balanced meals a day. diagnosis! In a tight family, the loss of the person does 3 well. Caregivers can talk to a spiritual advisor or mental ¨ I get at least seven restful hours of not need to be a loss or diminishment in their legacy or Depression, anger, confusion, and mood swings health professional concerning their own spiritual sleep a night. the personal, business, and ethical principles that he or are neuro­psychiatric symptoms. Dealing with 3 concerns or the desire to examine their faith or beliefs. ¨ I talk with or visit three friends or she lived by.” Keep records of all financial transactions, the neuropsychiatric symptoms that brain tumor relatives weekly. including investments, resources, creditors, debtors, patients often experience is one of the most 3 ¨ I get out or exercise at least once a week. Impact on the Family and business transactions. Keep a record of where difficult and stressful things for caregivers and 3 ¨ I keep my annual medical and dental important documents are kept so they can be easily families. Behavioral and personality changes in Illness is not a personal problem; it’s a family affair. appointments. located when needed. a loved one can be subtle or drastic. Speak with Caring for a loved one with a brain tumor can be a ¨ 3 I take only the medications prescribed your doctor if you notice these types of changes. family's greatest challenge. It is essential that the family to maintain my health. The end of life is not something we like to think about. The symptoms may be treatable. meets and talks about the situation and all the possible However, planning ahead can help the patient and outcomes. Children need age-appropriate information family avoid the burden of uncertainty and disagree- about the illness and treatment. Young family members ments at this emotionally and physically stressful time. Anger may arise for several reasons following news of should be included in discussions to prevent them from However, there are places to turn to for guidance on By filling out a legal document called a living will (or a diagnosis. It may be anger about the diagnosis itself. feeling isolated and confused. Encourage input from all dealing with these changes. There is help available advance health care directive), patients can ensure that It is natural to be angry and upset when one’s life has family members. If there are communication problems, through professionals and peers, community resources, their wishes will be carried out if they should become been turned upside-down. Dealing with the hospital or it may be helpful to get a neutral person to facilitate books and publications, and on the Internet. A doctor or unable to make decisions or to express themselves. A treatment team may cause anger and frustration. The the discussions. This can be a friend, social worker, or medical social worker can offer referrals. living will can give specific instructions and/or authorize health care professionals encountered during and after religious advisor. a chosen person (called an agent) to make health care treatment may not be as helpful and understanding as It is beneficial to develop a good working relationship It often falls on one family member to be the primary decisions for the patient. This legal document expresses one would like. with the patient’s health care team. Find a nurse who caregiver. However, no one person should have to take a person’s wishes for health care treatment at the end can help your loved one get the best care possible. Caregivers may be afraid of what the future may bring on all the responsibility of caregiving alone. When of life. A living will can be cancelled or replaced at As the patient’s advocate, a caregiver may ask the after learning about their loved one’s brain tumor caregivers need a break, they can seek assistance from any time. Everyone—regardless of his or her state of treatment team what to expect throughout the course diagnosis. It is frightening to witness a loved one suffer- other family members or friends. Caregivers should health—should have a living will. of treatment. That is, what is typical in terms of the recognize that some people are better able than others ing from a serious illness. patient’s response to treatment and what possible side to handle certain tasks or levels of responsibility. If one effects may occur. Remember that it is important to If a child has been diagnosed, parents may feel guilty. person does not respond, ask someone else. When respect and be considerate of the members of the Emotional Issues They may think they might have done something to family or friends are not available, respite care or an health care team. They can become invaluable as provid- cause the brain tumor of that they could have protected adult day care center (if appropriate) may provide a Caregivers and brain tumor patients alike may feel ers and friends. their child. If an adult loved one has been diagnosed, break for the caregiver. If the patient’s condition should overwhelmed and confused when they first receive caregivers may think that they should have recognized Spiritual questions may arise in times of crisis and decline drastically, or near the end of life, the caregiver the diagnosis. They may experience a flood of feelings the illness sooner. Some of us may have learned to feel suffering, as we seek meaning and comfort. Empathic and family will have to decide if the loved one can be followed by an attempt to regain a sense of equilibrium. guilty when something goes wrong, regardless of the listening and attention to these matters by the caregiver best cared for at home, or if hospice or nursing home This process can be challenging. The book, The Human cause. Guilt is quite subjective. can be a great gift to the patient. However, these issues care is needed. Side of Cancer: Living with Hope, Coping with Uncertainty, can be complex, and the caregiver does not necessar- speaks to this. Authors Jimmie Holland, MD of Memorial Grief is a normal reaction to loss. Most people associate ily have to be the only source of spiritual comfort. In Sloan-Kettering Hospital in New York, and Sheldon grief with the loss of a life. However, any change result- Lewis, editor of the International Journal of Integrative ing in a loss will cause grief, including illness. Especially the book, Share the Care: How to Organize a Group to “We all had to find a new normal, make sacri- Medicine, emphasize finding a balance between the when there are changes in personality or mental func- Care for Someone Who Is Seriously Ill, authors Cappy fices, and face some realities that were difficult. psychological and the logistical. Caregivers may have to tioning, loved ones must deal with the loss of the person Capossela and Sheila Warnock promote the wisdom The real challenge is understanding that some deal with being empathic and supportive on the outside that used to be. Grief is expressed in ways that are of psychol­ogist Stephen Levine, PhD. Dr. Levine, who of these changes have enriched our lives.” blends existential philosophy with Buddhist tra­dition, while feeling heart-broken and despairing on the inside. emotional, physical, and behavioral. Emotionally, grief explains that spiritual growth can lead to enormous —Mother of a 15-year-old Caregivers and brain tumor patients alike may experi- can cause sadness, anxiety, frustration, and despair. comfort for the patient. A person's spirit may be healed pilocytic astro­cytoma survivor ence a range of emotions upon diag­nosis, including Physically, it can cause exhaustion, insomnia, restless- even if his or her body is not. Turning to professional anger, fear, guilt, and grief. ness, and a change or loss of appetite. Human grief is

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a process that often follows a healing pattern. However, there is no timeline or smooth passage from one phase Glossary of grieving to another.

All feelings are normal. It is what we do with these accessible Located in an area that can be approached by antibody A protein produced by specialized white blood cells feelings that counts. Being mindful of the ebb and flow surgery. Inaccessible tumors are located deep in the brain or (lymphocytes) in response to a foreign substance in the body of one’s emotions is part of the process of adjusting to beneath critical brain structures. (antigen). Antibodies are part of the immune system and fight life after a brain tumor diagnosis. Recognize difficult infection and disease. acuity Sharpness or clarity of hearing or sight. feelings early on, accept them, and find a constructive antiemetic Medication to help control nausea and vomiting. way to deal with them. It is important to talk or write adenoma A benign tumor that grows from or in a gland (ex. about these feelings. A Vietnamese proverb says, “A grief pituitary adenoma). antiepileptic drug (AED) Medication used to control seizures. Also called anticonvulsant, antiseizure drug, and epilepsy drug. requires a hundred tellings.” Caregivers and patients adjuvant A method, drug, or treatment used in addition to a may need to examine their feelings again and again. Fig- primary treatment to increase its effectiveness. antigen A foreign substance that causes the immune system to respond and produce antibodies. uring out a way to express, manage, and accept difficult AED See antiepileptic drug. feelings requires constant attention and focus. aphagia Loss of the ability to swallow. agnosia Impairment or lack of the ability to recognize objects While caregiving is difficult, being a patient is not easy or people. This symptom may occur with tumors located in the aphasia Loss of the ability to speak, write, or understand brain’s parietal lobes. spoken or written language. This symptom may occur with either. Patients want to be heard and to have choices. tumors located in the dominant cerebral hemisphere. Honoring the patient’s emotional needs takes skill. agraphia Impairment or lack of the ability to write. This ataxia Loss of the ability to coordinate muscles in voluntary Caregivers may find it difficult to balance the patient’s symptom may occur with tumors located in the parietal lobe of the dominant cerebral hemisphere. movement. sense of independence with his or her need for help. However, whatever his or her level of functioning, there alopecia Loss of hair. This is a common side effect of radiation ataxic gait Loss of motor control of the legs, causing a clumsy therapy and some chemotherapy drugs. walk. are almost always possibilities for patients to have choices. An experienced caregiver offered these words alternative medicine Treatment used in place of conventional BBB See blood brain barrier. medicine. of wisdom: “Let your loved ones have a voice in their care. BCNU (carmustine) A chemotherapy drug used for treating This is their body and their experience. It can be as simple analgesic A substance that reduces or relieves pain without malignant glioma. causing loss of consciousness. as the color band-aid they wear or what time they go to benign Slow growing, not malignant or cancerous. physical therapy. Feeling important and like she is still a anaplasia The growth of tumor cells without form, structure, bilateral Occurring on both sides of the body or brain. person, not just a patient, is one of the most important or orientation to one another, a character­istic of cancer things to my daughter.” cells. The degree, or grade, of anaplasia reflects the tumor’s biologic response modifier (BRM) A substance that helps the potential for growth. The fastest growing tumors have the body’s immune system to resist or stop tumor growth. Caregiving is not an easy job, but a sense of humor can greatest degree of anaplasia, and are the most malignant. biopsy A surgical procedure that involves removing help you deal with the emotional ups and downs. Don’t anesthesiologist A doctor specializing in the study and a small amount of tissue and examining it under a overlook the benefits of having fun. It“ is really important administration of drugs to decrease sensation and pain during microscope in order to determine the tumor type. that we change what we are doing once in a while,” one surgery. blood brain barrier (BBB) A natural defense the brain caregiver suggested. “Take a road trip, a humor break, or angiogenesis The formation of new blood vessels to support develops that prevents foreign substances from entering the eat breakfast at midnight. Play with the routine; get a new growing tissue. brain through the blood. Humor is important to our psychological perspective.” angiogenesis inhibitor A substance that limits the growth bone marrow transplantation (BMT) A procedure in which and physical health, and laughter is good medicine. It is of new blood vessels. This is one of the biologic therapies bone marrow is injected into a patient after intensive chemo- a universal coping mechanism for dealing with stress. currently being studied. Also called anti-angiogenesis therapy. therapy treatment. Autologous transplants involve cells that have been taken from the patient, stored, and then reinfused angiogram A procedure used to diagnose and monitor blood This chapter was written by Susan Weisberg, LCSW, and following high-dose therapy. Allogenic transplants use marrow vessels and brain tumors. The patient is injected with a we are very grateful for her assistance. donated by another person. Syngenic transplants use marrow contrast agent, and x-rays chart the flow of blood to the brain, donated by an identical twin. revealing any abnormalities along the blood vessel pathways. Also called arteriogram. brachytherapy A form of radiation therapy in which small radioactive pellets or seeds are implanted directly into the anorexia Uncontrolled lack of appetite. tumor. Also called interstitial radiation. anosmia Loss of the sense of smell. BRM See biologic response modifier. anterior Located toward the front (of the brain).

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calcification A deposit of calcium. CNS See central nervous system. dysphagia Difficulty swallowing. This symptom may occur with hereditary characteristics or the information to perform a tumors located in the medulla. specific function. Each gene exists at a specific location on a CAM Complementary and alternative medicine. complementary medicine Treatment used together with chromosome. conventional medicine (ex: using aromatherapy to reduce a dysphasia Inability to use language correctly or understand cancer Malignant tissue made of abnormal cells that divide patient’s discomfort after surgery). written or spoken words. This symptom may occur with gene therapy Treatment that replaces or repairs abnormal uncontrolled. Cancer tends to invade and destroy normal cells, tumors located in the dominant cerebral hemisphere of the genes that cause disease. and spread to other sites. computerized tomography (CT scan) A method to diagnose brain, particularly in the frontal, temporal, and parietal lobes. and monitor brain tumors using x-ray and computer technol- generic A drug not protected by a trademark; the carcinogen A cancer-causing substance or agent. ogy to produce an image, or scan, of the brain. Also called CAT dysplasia Abnormal development of cells or tissue that can scientific name of a drug. carmustine See BCNU. scan. lead to cancer. genetic Related to heredity; having to do with the transfer of carotid artery One of two major blood vessels that carry blood contraindication Something that makes a particular treatment edema Swelling caused by an excessive accumulation of fluid characteristics through the genes. to the head. or procedure inadvisable. in the cells or tissue. germ cell A reproductive cell (egg or sperm). Germ cell tumors case A person or group of people being treated in a study or contrast agent A material, or dye, that is injected into the electroencephalogram (EEG) A recording of the electrical can develop in the pineal region of the brain. clinical trial. The case group is compared to the control group. bloodstream of a patient and accumulates in abnormal tissue. activity in the brain. An EEG can be useful for monitoring gland An organ that produces hormones. Contrast agents can highlight areas of MRI and CT scans, and CAT scan Computerized Axial Tomography scan. Also called seizures. angiograms. Common contrast agents include iodine and glial cells Supporting tissue of the central and peri­pheral CT scan. See computerized tomography. gadolinium. embolism The sudden blocking of an artery by a blood clot or nervous system that exists between nerve cells and blood catheter A hollow, flexible tube that is inserted into the body foreign material in the bloodstream. vessels. Glial cells in the central nervous system include control A group of people against whom a case study is being (or brain) to remove or introduce fluids. oligodendroglial cells, astrocytes and ependymal cells. Also compared. The control group may be from the general popula- encapsulated Enclosed in or surrounded by a gelatinous called neuroglia. cell The smallest structure of living tissue that can function tion, unaffected by disease, or may be receiving standard covering or membrane. An encapsulated tumor is confined to independently. A cell contains a nucleus, cytoplasm and a treatment. a specific area and may be surrounded by a cyst. glioma A tumor formed from glial tissue. membrane. craniotomy Surgery involving the removal of a portion of the endocrine dysfunction Disorders which involve the overpro- gray matter The outer surface (cortex) of the brain that is central nervous system (CNS) The brain, spinal cord, and skull to get access to the brain. After surgery, the removed duction or underproduction of hormones by the pituitary made up of nerve cells and blood vessels. gland. These hormones affect growth and the functions of cranial nerves. portion of skull is put back in place. When the piece of the hemianopia Loss of vision or blindness affecting one-half of skull removed during surgery is not replaced, the operation is other glands in the body. cerebellum The part of the brain responsible for voluntary the visual field in one or both eyes. Also called hemianopsia. called a craniectomy. muscle movement. This structure is connected to the brain endocrinologist A medical professional specializing in hemiparesis Muscle weakness or partial paralysis stem. cranium The skull. disorders of the hormone-secreting glands, including the affecting only one side of the body. pituitary gland. cerebral hemisphere See cerebrum. CSF See cerebrospinal fluid. heterogeneous Made up of more than one cell type. epidemiologist A specialist in the population-based trends cerebrospinal fluid (CSF) The clear liquid that surrounds the CT scan See computerized tomography. and patterns of diseases. histology The science of the microscopic structure of cells, brain and spinal cord. CSF is formed in the four ventricles cyst A membrane or sac filled with fluid. tissues and organs in relation to their functions. Histopathol- (cavities) of the brain. CSF circulates through the ventricles, epithelium A type of membrane that covers the surface of an ogy refers to the structure of abnormal or diseased tissue. the subarachnoid space, and the central canal of the spinal debulk To remove part of the bulk of (a tumor). internal organ or lines a cavity inside the body. cord. Also called cerebral spinal fluid and spinal fluid. homogeneous Made up of one cell type. deep vein thrombosis (DVT) See thrombosis. etiology The study of the causes of diseases. hormone A substance produced by glands that is released cerebrum The large, rounded part of the brain in the top deoxyribonucleic acid (DNA) The material in the nucleus of a fatigue A condition of extreme lack of energy. into the bloodstream. Hormones affect the behavior and portion of the skull. The cerebrum contains two halves, or cell that is the source of a person’s inherited char­acteristics. metabolism (physical and chemical processes) of other cells. hemispheres. Each hemisphere is made up of four lobes: fron- focal Limited to a single area. Hormones also affect many body functions, including growth tal, temporal, parietal, and occipital. differentiation The process by which immature cells mature into normal cells. Differentiated cells perform specific func- Foley catheter A tube that is placed in the bladder to drain and maturation. chemotherapy A treatment using chemical drugs to kill tumor and measure the amount of excreted urine. tions and are not likely to divide. Differentiation also applies to hydrocephalus An abnormal buildup of fluid inside the cells. Chemotherapy is usually given by mouth (orally) or the similarity between normal cells and cancer cells. Cancer ventricles of the brain. Also called water on the brain. injected into a vein (intravenously). Chemotherapy can also be foramen An opening in a bone or membrane. cells that are well differentiated are similar to the original cell placed in the tumor cavity during surgery (polymer wafers), hyperfractionated radiation A delivery method of conven- and are usually less aggressive. fractionated Divided into several small doses. A term used in or infused in liquid form directly into the tumor using a small radiation therapy. tional radiation therapy in which the radiation is divided into pump (convection-enhanced drug delivery). diplopia The visual perception of two objects where there is many doses of low intensity. only one; double vision. This symptom may occur with tumors gadolinium A contrast agent used in MRI scans. choked disk See papilledema. hypertension High blood pressure. located in the brain stem. gait Pattern of walking. chromosome Structures in the nucleus of a cell that contain hyperthermia A treatment using heat produced by microwave DNA See deoxyribonucleic acid. genes. Gamma Knife A machine that focuses high-intensity radiation sources to kill tumor cells. dura mater The outermost layer of the three membranes in on a small target area. See stereotactic radiosurgery. chromosomal loss A portion of a chromosome that is missing hypothalamus A structure near the pituitary gland that has a the meninges, which cover the brain and spinal cord. one or more genes. ganglia A mass of nerve tissue (gray matter) or a group of role in the functions of the nervous system, hormonal pro- DVT Deep vein thrombosis. See thrombosis. nerve cell bodies. Also called nerve bundle. Ganglia can refer cesses, regulating body temperature, and sexual maturation. clinical trial A research study conducted with patients to to specific groups of nerves in the brain and spinal cord, such dysarthria Inability to express or articulate words. This immune system The body’s natural defense system, consist- determine the safety and effectiveness of new treatments, or to as basal ganglia. improve existing ones. symptom may occur with tumors located in the medulla or the ing of certain organs and cells that protect against infection, cerebellum. gene A part of a cell formed from DNA that controls disease, and foreign substances.

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immunosupression Weakening or prevention of the natural malignant Rapidly growing, aggressive, invasive, or cancerous. nervous system. Neuroepithelium has qualities of both neural paralysis The loss of motor function (the ability to move) in biological defenses which protect the body against disease and epithelial cells. part or all of the body. medulla The center area or inner portion of the brain. and illness. neuroglia See glial cells. paresis Muscular weakness involving partial or incomplete ingest To take into the stomach for digestion; to eat. membrane A thin layer of tissue that can function paralysis. as a protective covering over a surface, the lining of a cavity, or neurologist A doctor specializing in the diagnosis and treat- inoperable Located in an area that is not accessible by a division between a space or an organ. ment of disorders and diseases affecting the brain, spinal cord pathologist A doctor who specializes in diagnosing diseases surgery. and nervous system. by studying tissue under a microscope. meninges Any of the three membranes that cover the brain integrative medicine Treatment that combines main­stream per os (PO) Orally. (Through the mouth, in Latin.) and spinal cord. The meninges include the arachnoid, dura neuron A nerve cell that receives electrical signals (impulses) medical therapies with CAM therapies for which there is mater, and pia mater. from other neurons and transmits impulses to muscles or pituitary gland A small, oval structure located at the base scientific proof of safety and effectiveness. other neurons. of the brain in the center of the head, behind the eyes. The metastasis The spreading of a disease from an original site to interstitial irradiation A form of radiation therapy in which pituitary gland secretes hormones which help control the another or other locations in the body. neuro-oncologist A doctor specializing in the diagnosis and small radioactive pellets or seeds are implanted directly into body’s other glands and regulate growth and metabolism. treatment of cancers affecting the brain, spinal cord and the tumor. Also called brachytherapy. metastatic brain tumor A type of brain tumor that comes nervous system. placebo An inactive material that has no effect. A placebo may from diseased cells in another part of the body. The tumor intracranial pressure (ICP) Pressure inside the be used in an experiment to test the effectiveness of another cells spread to the brain by moving through the bloodstream neuro-ophthalmologist A doctor specializing in the treatment cranium, or skull. Increased ICP can be caused by a tumor or substance or drug. or the lymph system (metastasis). Also called secondary brain of diseases of the eyes affected by the nervous system. by excess fluid (edema). tumor. pleocytosis The presence of a greater number of cells than neuro-otologist A specialist in the diagnosis and treatment of intravenous (IV) Into a vein. Often refers to a method of normal in the cerebrospinal fluid. disorders and diseases affecting the acoustic nerve, the ears, delivering medication using a needle to inject the substance MIB-1 labeling index A method of measurement used to or hearing. PNET Primitive Neuroectodermal Tumor. into the bloodstream. estimate how slowly or quickly a tumor is growing. Also called MIB-1 proliferation index. positron emission tomography (PET) A medical imaging tool invasive Any procedure that involves puncturing or cutting neuropathy Numbness or tingling in the hands or feet. used to detect abnormal tissue. The patient is injected with the skin, or inserting an instrument or foreign material into the molecular marker A substance in the blood or body that helps neuropsychologist A licensed psychologist specializing in a glucose-based contrast agent, which collects in diseased body. Also refers to the ability of cancer to spread into normal to indicate the presence of a tumor or cancer. Also called the study of how the brain functions and the impact of brain areas. The PET scan creates computer images of those areas. tumor marker. tissue. damage on a person’s behavior and abilities. posterior Located toward the back of the body (or brain). ionizing radiation A type of radioactive energy that can monoclonal antibodies (MAB) Antibodies made in the neuroradiologist See radiologist. break chemical bonds or strip electrons from atoms, causing laboratory from a single type of immune system cell. These primary brain tumor A tumor that originates within the brain. damage to the DNA in cells. Examples of ionizing radiation are antibodies can identify substances on cancer cells or normal neurosurgeon A surgeon specializing in the diagnosis, treat- procarbazine A chemotherapy drug used to treat malignant gamma rays and x-rays. substances that may help cancer cells grow. The antibodies ment and surgical management of disorders and diseases of gliomas. attach to the substances and kill the cancer cells or block their the brain, spine and nervous system. irradiation The use of radioactive rays, including x-rays or growth. prognosis A prediction or projection about the probable gamma rays, to destroy tumor cells. Also called radiation non per os (NPO) Nothing to eat or drink. (Nothing through outcome of a disease, or the prospects of recovery. therapy. morbidity A diseased state, or complications resulting from the mouth, in Latin.) proliferation The reproduction or multiplication treatment. Karnofsky scale A performance measurement for rating nuclear medicine The branch of medicine specializing in of cells. a person’s level of physical activity. It is used to evaluate a motor A muscle or nerve that produces or controls movement. the use of radioactive chemical elements for diagnosis and protocol The treatment plan in a clinical study. patient’s condition. treatment of disease. MRI See magnetic resonance imaging. pulmonary embolus A condition in which blood clots in one laser A medical instrument that produces a powerful beam nucleus The center of a cell, which contains chromosomes part of the body break loose and travel to the lungs, where of light and can produce intense heat at close range. Used to multidisciplinary Made up of individuals from different fields and DNA and is essential to cell functioning. they can block one or more blood vessels. vaporize tissue during surgery. or specialties. oncogene A mutated gene that can transform a normal cell pulmonary fibrosis A condition in which the air sacs of the lateral Refers to location on the side or sides of the body or myelosuppression Weakening or prevention of the bone into a tumor cell. Also called transforming gene. lungs are gradually replaced by scar tissue. brain. marrow’s production of blood cells and platelets. oncologist A doctor specializing in the treatment of cancer. quality of life (QOL) The level of comfort, enjoyment, and lesion Diseased or abnormal tissue; tumor. nasogastric tube A tube inserted through the nose into the ability of a patient to pursue daily activities. QOL is often used stomach, to drain the contents of the stomach or to provide ophthalmologist A doctor specializing in the diagnosis and leukopenia Low white blood cell count. in reference to treatment options. nourishment to a patient who is unable to swallow. Also called treatment of eye disorders and diseases. lumbar puncture A procedure in which a needle is inserted feeding tube. radiation necrosis See necrosis. into the lower spine to withdraw cerebro­spinal fluid. Also called otolaryngologist A doctor specializing in the diagnosis and radiation oncologist A doctor specializing in the administra- spinal tap. necrosis Death of cells or tissue through injury or disease. treatment of disorders and diseases of the ear, nose and Necrosis can be a side effect of radiation treatment. throat. tion of radiation therapy. lymph A clear, watery fluid that contains white blood cells. radiation therapy Treatment using high-energy, ionizing radia- Lymph circulates through the body via the lymphatic system neoplasm A tumor. palliative Treatment intended to reduce pain and tion to stop cancer cells from dividing. Also called radiotherapy. and removes bacteria and certain proteins from the tissues. increase comfort, rather than to cure a disease. nervous system The entire grouping or functional unit of radiologist A doctor specializing in the interpretation of x-ray magnetic resonance imaging (MRI) A scanning technique nerve tissue in the body made up of the brain, brain stem, papilledema Swelling of the part of the optic nerve called films, scans, and images, including CT and MRI scans. used to create high-quality images of soft tissue structures spinal cord, nerves, and ganglia. the optic disk. This can be caused by increased intracranial inside the human body. MRI is used to diagnose and monitor pressure. Also called choked disk. radiosurgery See stereotactic radiosurgery. neuroepithelium The part of an embryo that de­velops into the the growth of brain tumors.

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radiotherapy See radiation therapy. tissue A group of similar cells united to perform a specific function. recurrence The regrowth of a tumor after treatment. This may Index be indicated by a return of symptoms. tumor An abnormal mass of tissue that results from uncon- trolled cell division. Also called neoplasm or lesion. remediation Specialized instruction for children to maximize their development, learning abilities, and quality of life, and to tumor marker A substance in the blood or body that helps A brain stem glioma, 23 help make up for impairments caused by a brain tumor. to indicate the presence of a tumor or cancer. Also called Accutane (isotretinoin), 43 molecular marker. C remission The reduction or disappearance of symptoms or of acoustic neuroma, 26. See also schwannoma, care and treatment, 35, 56–57 a tumor in response to treatment. Remission can be tempo- ultrasound A type of imaging technique which uses high- vestibular schwannoma rary or permanent. frequency sound waves to create a two-dimensional picture of caregivers acupuncture, 44, 46 soft tissue in the body. emotional impact, 60–64 resection The removal of a tumor by surgery. acute stage, survivorship, 54 vascular Referring to blood vessels. management and help, 60–61 secondary brain tumor See metastatic brain tumor. age of patient ventricle A space in an organ through which fluid circulates. CAT scan, 11 seizure A sudden attack or convulsion due to an uncontrolled average at diagnosis, 14 Ventricles of the brain contain CSF; ven­tricles of the heart burst of electrical activity in the brain. causes of tumors, possible contain blood. survival rates, 15–16 cellular phones and radio frequency (RF), 17–18 shunt A hollow tube or catheter surgically placed vertebra One of 23 bones that make up the spine. tumor type, 15 in the body to drain fluids. A shunt may be inserted in the chemicals and environment, 17–18 air pollution, 18 brain to relieve increased intracranial pressure caused by vertigo Dizziness, or an illusion of movement. This symptom diet, 17 blocked cerebrospinal fluid. may occur with tumors located in or near the acoustic nerve. Americans with Disabilities Act (ADA), 58 electromagnetic fields, 17–18 spinal fluid See cerebrospinal spinal fluid. white matter Brain tissue made up of nerve cell fibers coated anaplasia, 20 head injuries and seizures, 17 with myelin, a substance that conducts nerve impulses. White anemia, 40, 51 spinal tap See lumbar puncture. matter transmits information between the nerve cells in the hereditary and genetic influences, 16 angiography, 10, 12 standard treatment A proven, effective procedure to coun- brain and spinal cord. ionizing radiation, 16 teract disease. Standard brain tumor treatments are surgery, antiepileptic drugs (AED), 50-51 whole brain radiation therapy (WBRT) A type of conventional cediranib (Recentin), 43 radiation therapy, and chemotherapy. radiation therapy that aims radiation at the entire brain. WBRT arachnoid, 6 cell division, 13 stem cell A primitive cell with the ability to differentiate is used to treat multiple tumors and metastatic brain tumors. astrocytoma, 21, 22, 23, 24, 31 cellular phones, 17-18 (mature) into a specialized adult cell. Avastin (bevacizumab), 41, 43 central nervous system (CNS), 5–6 stereotactic radiosurgery (SRS) A type of radiation therapy awake craniotomy, 34, 36 that uses a large number of precisely aimed beams of ionizing cerebellum, 7, 9, 21 ayurveda, 44 radiation. The beams are aimed from many directions and cerebral hemispheres, 6, 21, 50 meet at a specific point to deliver a single, high dose of radia- B cerebrospinal fluid (CSF), 5, 6, 8, 10, 35–36 tion directly to the tumor. SRS avoids exposing normal tissue to radiation. behavioral symptoms, 48, 60, 61 cerebrum, 6–7 benign vs. malignant, 4, 14, 16, 20, 23, 28 steroid A type of drug used to reduce swelling (edema) chemotherapy caused by tumors or treatment. bevacizumab (Avastin), 41, 43 drugs, 40–41 subcutaneous Under the skin. biologic therapies, 41–44 side effects, 40 suction The process of sucking or drawing out fluid by using biopsy, 12, 35 treatments, 39–40 negative pressure. A device such as a pump or valve can cause blood brain barrier, 39, 44 chiropractic therapy, 44 suction. blood brain barrier disruption, 39 chordoma, 26 supratentorium The upper part of the brain. blood clots, 35, 40, 44, 51–52 choroid plexus, 6 systemic Affecting the body as a whole. brain classifying brain tumors, 20 tentorium A fold of the dura mater that separates the cerebral functions of, 9 clinical trials, 40–42 hemispheres from the cerebellum in the back of the brain. structure of, 5-7, 9 closed biopsy, 12 thrombosis A condition in which blood clots form, often in the tumor, defined, 3 CNS lymphoma, 26 legs. The clots block one or more veins, disrupting the blood brain edema, 32, 49 cognitive rehabilitation, 48–49 flow. brain mapping, 34, 36 cognitive symptoms, 8, 48 tinnitus Buzzing or ringing in the ear. This symptom may brain scans, 9–12. occur with tumors located in or near the acoustic nerve. See also specific types compensation techniques, 48–49 brain stem, 7, 9 complementary and alternative medicine (CAM), 44–46

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complex partial seizures, 50 emotional reactions optic nerve glioma, 25 K computed tomography (CT or CAT scan), 11 grief, 54–55, 61, 63 subependymoma, 25 Karnofsky Performance Scale (KPS), 16 conformal radiation, 37 range of feelings, 3, 54–55, 56, 61, 63–64 WHO classification, 20 L constipation, 40, 44, 52 end of life, 15, 63 gliomas, 21–25 lesions, 31 contrast agent (contrast dye), 9, 10, 11, 12 environmental influences, 17–18 grand mal seizures, 50 leukopenia, 40 convection-enhanced delivery, 44 ependymoma, 20, 23, 25 grief, 54–55, 61, 63, 64 linac radiosurgery, 38 convulsions, 8 epidural space, 6 guided imagery, 45 lobes, 6, 9 corpus callosum, 7 erlotinib (Tarceva), 43 H loss of balance, 8, 50 cost, insurance and financial assistance, 57–58 ethnic incident rates, 15 head injuries, 17 lumbar puncture (spinal tap), 35 craniopharyngioma, 20, 27 exercise, 45 headaches, 8, 12, 31, 32, 39, 44, 49 lymphatic system, 26, 45 craniotomy, 12, 34 executive functioning, 48 healing touch, 45 cranium, 5 extended stage, survivorship, 54 M CT scan, 11 health insurance, 57–58 external beam radiation therapy, 37 magnetic resonance angiography (MRA), 10 cysts, 31 Health Insurance Portability and Accountability Act magnetic resonance imaging (MRI) F (HIPAA), 59 diffusion and diffusion-tensor MRI, 11 D family, impact on, 32, 48, 49, 56, 62 health maintenance organizations (HMOs), 58 flow sensitive MRI (FS MRI), 10 deep vein thrombosis (DVT), 40, 51–52 female vs. male incidence rates, 14–15 hemangioblastoma, 27 functional MRI (fMRI), 10–11, 36 debulking (partial resection), 24, 34 financial assistance, cost and insurance, 57–59 herbal medicine, 44, 45–46 depression, 30, 44, 48, 52, 54, 61, 63 interactive MRI, 36 focal seizures, 50 hereditary and genetic influences, 16 dexamethasone (Decadron), 32, 49 open MRI, 10 focused radiation therapy, 37 homeopathy, 45–46 diagnosis perfusion MRI, 11 frontal lobes, 6, 9 hope, 55 age of patient, 14 standard MRI, 6 functional status, 16 hormonal changes, 52 biopsy, 35 magnetic resonance spectroscopy functions, brain, 8–9. See also brain hydrocephalus, 10 (MRI Spect or MRS), 11 emotional impact, 54, 63 hypophysis (pituitary gland), 7 male vs. female incidence rates, 14–15 geographic and ethnic incidence rates, 15 G hypothalamus, 7, 52 malignant vs. benign, 4, 14, 16, 20, 23, 28 incidence rates, 14 Gamma Knife radiosurgery, 38 massage therapy, 45–46 neurological examination, 8 gender incidence rates, 14 I Medicaid, 58 pathology report, 12–13 gene therapy, 43 imaging techniques and scans, 9–12. See also specific Medicare, 58–59 scans and imaging techniques, 9–12 generalized seizures, 50 types meditation, 46 second opinions, 13, 56 genetic and molecular research, 18 immunosuppression, 16, 40 medulla oblongata, 7 tumor board, 32 genetic influences, 16, 19 immunotoxin therapy, 43–44 medulloblastoma, 20, 27, 29, 39 diet, 17, 44–45 geographic incident rates, 15 implant, polymer wafer, 39, 41 meninges, 5–6, 28 drugs germ cell tumors, 14, 28 incidence rates, 4, 14–16, 26 meningioma, 14, 15, 16, 17, 28, 31, 49 antiepileptic (AED), 50 glial cells, 21, 24 infections, viruses and allergens, 16–17 biological therapy, 41 metastatic brain tumors, 3, 4, 14, 31, 37 glial tumors insurance, cost and financial assistance, 57–58 chemotherapy, 40, 41 MIB-1 labeling index, 13 astrocytoma, 21–22 integrative medicine, 44. See also complementary and photodynamic therapy (PDT), 36 microsurgery, 36 benign vs. malignant, 23 alternative medicine (CAM) steroids, 32, 34 midbrain, 7 brain stem glioma, 23 Intensity Modulated Radiation Therapy (IMRT), 37 dura mater, 5 misdiagnosis, 13 ependymoma, 23 intraoperative MRI, 36 mixed glioma, 24 E glioblastoma, 22 intraoperative ultrasound imaging, 36 molecular and genetic research, 18 edema, 8, 32, 39, 49 juvenile pilocytic astrocytoma, 22 invasive vs. non-invasive procedures, 10 mucositis, 40 electromagnetic fields, 17–18 mixed glioma, 24 ionizing radiation, 11, 16, 17, 18 myelosuppression, 40, 41 embolization, 35 oligodendroglioma, 24 isotretinoin (Accutane), 43

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N personality changes, 8, 32, 39, 48, 52, 63 second opinion, 13, 34, 56, 61 T National Brain Tumor Society (NBTS), 13, 55, 56 photodynamic therapy (PDT), 36–37 secondary brain tumors, 3, 14, 31 Tarceva (erlotinib), 43 National Coalition of Cancer Survivorship pia mater, 6 seizures targeted therapies, 42–43 (NCCS), 53, 57 pilocytic astrocytoma, 22 characteristics, 49–51 temporal lobes, 5, 6, 9, 50 nausea, 8, 32, 39, 40, 41, 44, 49, 52 pineal tumor, 28 head injuries, 17 thalamus, 7 needle biopsy, 12, 35 pineoblastoma, 28, 29 treatments, 50–51 thalidomide (Thalomid), 43 neurofibromatosis, 16, 31 types, 50 pituitary gland, 6, 7, 9, 29, 39 thrombosis, 40, 51–52 neuroglia, 21 shunt, 35 pituitary tumor, 29, 36 transphenoidal surgery, 36 neurological examination, 8 skull, 5–6, 8, 12, 32 planning ahead, 63 treatment neuropathy, 40, 41, 44 social security disability insurance (SSDI), 59 pons, 7 biologic therapies, 41–44 neuropsychological testing, 34, 48, 61 sorafenib (Nexavar), 43 positron emission tomography (PET), 12 chemotherapy, 39–40 neuropsychologist, 33, 48, 58, 61 post-operative care, 35 speech disorders, 8 clinical trials, 40, 42 Nexavar (sorafenib), 43 post-traumatic growth (PTG), 55 spinal column, 5 cognitive rehabilitation, 48–49 non-glial tumors post-traumatic stress disorder (PTSD), 55 spinal cord, 5, 6, 7 complementary and alternative medicine acoustic neuroma, 26 spinal tap (lumbar puncture), 35 primary brain tumors, 3, 21–30 (CAM), 44–46 chordoma, 26 stereotactic biopsy. See biopsy primitive neuroectodermal tumors (PNET), 27, 29 follow-up care, 56–57 CNS lymphoma, 26 stereotactic radiosurgery (SRS), 37–38 proliferation, 13 glial tumors, 21–25 craniopharyngioma, 27 stereotactic radiotherapy (SRT), 38 proton beam radiosurgery, 38 metastatic brain tumors, 31 hemangioblastoma, 27 stereotactic surgery, 36 pseudotumor cerebri, 31 non-glial tumors, 26–30 medulloblastoma, 27 steroids, 32, 34, 39 pulmonary embolus (PE), 51–52 radiation therapy, 37–39 meningioma, 28 subarachnoid space, 6 recurrent tumors, 30 pineal tumor, 28 R subdural space, 6 pituitary tumor, 29 radiation therapy (RT) subependymoma, 25 seizures, 49–51 primitive neuroectodermal tumors (PNET), 29 side effects, 38–39 supplemental security income (SSI), 59 steroids, 32, 34 rhabdoid tumor, 30 types, 37–39 support groups, 55, 60 surgery, 34–36 schwannoma, 30 radio frequency (RF), 17–18 surgery treatment team, 32–33, 62 nutritional supplements, 17, 45, 46, 47 radiosurgery, 37–38 resection, 24 trends in incidence rates, 14–18 Recentin (cediranib), 43 risk factors, 35 tuberous sclerosis, 16, 31 O record keeping, 11, 34, 56, 57, 61, 63 types, 34–35 tumor board, 32. See also treatment team occipital lobes, 6, 9 recurrent tumor (recurrence), 30, 49 survival and prognosis, 15 tumor oligoastrocytoma, 24 remission, 23, 53, 55 survivorship, 53–54 conditions related to, 31 oligodendroglioma, 24 research and technology, 18 suture lines, 5 defined, 3 Ommaya reservoir, 36 symptoms resection, 24, 34–37 glial, 21–25 open biopsy, 12 blood clots, 51 RF exposure, 18 metastatic, 3, 4, 14, 31 optic nerve glioma, 25 brain tumor, 8 rhabdoid tumor, 30 non-glial, 26–30 risk factors, 16–18 cognitive and behavioral, 48 P recurrent, 30 risk, of surgery, 35 fatigue, 51 parietal lobes, 6, 9 V partial resection (debulking), 24, 34 headache, 49 vaccine therapy, 43 S physical, 47, 52 pathology report, 13 ventricles, 5, 6, 35 sampling error, 13 seizures, 8, 17, 49–50 pediatric brain tumors, 14, 17–18, 20, 55 scans and imaging techniques, 9–12. See also specific vestibular schwannoma, 26, 30, 31 peripheral nervous system (PNS), 5 types vision changes, 8 permanent stage, survivorship, 54 schwannoma, 30. acoustic neuroma See also vomiting, 8, 32, 40, 44, 49, 52

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W weakness, 8, 30, 32, 44, 45, 47 white matter, 6 whole brain radiation therapy (WBRT), 29, 37 World Health Organization (WHO), 18, 20, 21, 28

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