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CHAPTER TWO / UNDERSTANDING BRAIN TUMORS

— Archie, patient — Archie, Be patient. Give yourself Give yourself Be patient. what’s time to absorb don’t and happening… dive into immediately the internet. Tumors Understanding Brain Understanding CHAPTER TWO / UNDERSTANDING BRAIN TUMORS CHAPTER 2/UNDERSTANDING BRAINTUMORS

Specialists The treatment team report Diagnostic Tumor types Tumor andimagingScans techniques Diagnosing abrain tumor brainDefining tumors What isabrain tumor? ...... 15 14 1 1 12 11 1 5 7 7 9 0 3 3 Understanding Brain Tumors

The brain, its structure, and the role that each part plays in our everyday thoughts and behaviors is remarkable. These are only some of the reasons why a tumor in the brain is so complex.

THINGS TO REMEMBER

2 There are over 120 types of brain and You can bring someone to doctors’ †† †† tumors. When appointments to help you sort through diagnosed, it is important to understand: information, ask questions, remember 1. The type and grade (how aggressive it is) next steps, and keep notes.

2. Whether it is a primary or a secondary †† Keep copies of your medical records, tumor current list, and diagnostic test 3. If it is cancerous (malignant) or not (benign) results. This can help you as you meet new 4. Where in the brain the tumor is located doctors and work with insurance.

†† It helps to get a second or even third †† Take one step at a time. You can learn opinion to confirm your diagnosis and about your diagnosis, treatment options, treatment plan. and what to expect after treatment, then decide the best next-steps for you and Keep a list with phone numbers for all †† your family. of the doctors, specialists, nurses, etc. on your team (collect business cards).

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS 5 Brain and BRAIN STRUCTURES AND THEIR FUNCTIONS Together, the brain and spinal cord (the central nervous system (CNS)) control the physiological and psychological functions • movement of our body. Generally our brain includes • reasoning • telling right three major parts: • behavior from left • memory • calculations • The controls thinking, • decision making • sensations learning, problem solving, emotions, • personality • reading • planning • writing speech, reading, writing, and voluntary • judgment movement. • initiative • inhibition • The controls movement, • mood balance, and posture. • vision • The brain stem connects the brain to the spinal cord, and controls breathing, heart rate, and the nerves TEMPORAL and muscles that we use to see, hear, LOBE walk, talk, and eat. • language comprehension CEREBELLUM • behavior • balance PITUITARY • memory • coordination GLAND • hearing • fine muscle • hormones • emotions control • growth For more information about BRAIN STEM • fertility the brain, view the National • breathing Institute’s PDQ, • blood pressure www.cancer.gov/cancertopics/pdq/ • heartbeat treatment/adultbrain/Patient • swallowing

Based on an illustration from National Brain Tumor Society’s The Essential Guide to Brain Tumors

6 FRANKLY SPEAKING ABOUT BRAIN TUMORS WHAT IS A BRAIN TUMOR? DEFINING BRAIN TUMORS

A brain tumor is an abnormal growth Benign spread to other areas of the body, they of in the brain or central spine The least aggressive type of brain tumor can spread throughout the brain or to the that can disrupt proper brain function. is often called a benign brain tumor. spine. These tumors can be treated with Doctors refer to a tumor based on where They originate from cells within or surgery, and radiation, but the tumor cells began, and whether surrounding the brain, do not contain they may recur after treatment. they are cancerous (malignant) or not cancer cells, grow slowly, and typically (benign). have clear borders that do not spread Primary into other tissue. They may become quite All brain tumors can grow to damage Whether cancerous or benign, tumors large before causing any symptoms. If areas of normal brain tissue if left that start in cells of the brain are called these tumors can be removed entirely, untreated, which could be disabling and primary brain tumors. Primary brain they tend not to return. Still, they can possibly fatal. tumors may spread to other parts of cause significant neurological symptoms the brain or to the spine, but rarely to Brain and spinal cord tumors are different depending on their size, and location other organs. for everyone. They form in different areas, near other structures in the brain. Some develop from different cell types, and may benign tumors can progress to become Metastatic or Secondary have different treatment options. In this malignant. Metastatic or secondary brain tumors book, we try to offer general guidance for begin in another part of the body and both low grade (benign) and high grade Malignant then spread to the brain. These tumors (malignant) primary brain tumors for Malignant brain tumors contain cancer are more common than primary brain adults. cells and often do not have clear borders. tumors and are named by the location in They are considered to be life-threatening which they begin. They are treated based because they grow rapidly and invade on where they originate, such as the lung, surrounding brain tissue. Although breast, colon or skin. malignant brain tumors very rarely

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS 7 FACTS ABOUT BRAIN TUMORS IN THE UNITED STATES

An estimated 688,000+ PEOPLE in the U.S. are living with PRIMARY BRAIN TUMOR TYPES a primary brain or central nervous system (CNS) tumor diagnosis:

138,000 WITH MALIGNANT TUMORS 550,000 WITH BENIGN TUMORS

APPROXIMATELY IN 2012, NEW PRIMARY BRAIN TUMOR DIAGNOSES INCLUDED: 20-40% 16 % OF ALL OTHER LATER 7% DEVELOP A BRAIN METASTASES 63% BENIGN 35% TUMORS 14 % Pituitary (41,980 Cases) 9% Nerve Sheath 2% Lymphoma 33% Other 37% (, Ogliodendroglimoa, MALIGNANT Embryonal, etc.) This accounts for 98,000 to 170,000 new TUMORS metastatic brain tumor cases each year. (24,300 Cases)

Source: CBTRUS Statistical Report (2012)

8 FRANKLY SPEAKING ABOUT BRAIN TUMORS DIAGNOSING A BRAIN TUMOR

What a crazy ride this has been. I went to bed after watching a movie and woke up in an ambulance on the way to the hospital. I didn’t know my name, didn’t recognize my wife or kids and couldn’t understand why I was in the back of this ambulance.

— Mike (from the National Brain Tumor Society’s Story Corner)

Some people may have symptoms that Neurological Examination suggest there is a brain tumor, others As part of the diagnostic testing, a doctor have no obvious symptoms. will measure nervous system functions, physical and mental alertness, and Commonly, people experience long include the examination of normal brain term , or , functions from reflexes to judgment, difficulty thinking and speaking/finding smell and taste. words, personality changes, tingling or stiffness in one side of the body, a loss of If responses are not normal, a brain balance, vision changes, , and/or scan will be ordered, or a patient will be disorientation (see Chapter 4). referred to a neurologist or neurosurgical oncologist for more tests. If these symptoms are occurring, a doctor will ask questions about a person’s medical history and overall health, and prescribe a variety of diagnostic tests to determine what is causing these problems, and then seek remedies.

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS 9 SCANS AND IMAGING TECHNIQUES

A scan is the first step to identify if a brain • Magnetic Resonance Spectroscopy tissue. PET is also used during brain tumor is present, and to locate exactly where (MRI Spect or MRS), measures the mapping procedures.

it is growing. A scan creates computerized levels of metabolites in the body. An • Spinal tap (also called a lumbar images of the brain and spinal cord by MRS can detect irregular patterns puncture), uses a special needle examining it from different angles. Some of activity to help diagnose the type placed into the lower back to measure scans use a (or a dye) to of tumor, evaluate its response to pressure in the spinal canal and brain allow the doctor to see the difference therapies, or determine aggressiveness and determine if there is an infection between normal and abnormal tissue. of a tumor. or tumor cells. A patient may need more than one type • Perfusion MRI examines the flow of of scan to diagnose a tumor, depending blood into the tissues to help assess Things to Know about Scans on its type and location. the grade/aggressiveness of tumors Ask your neurosurgeon or nurse what and differentiate a recurrent tumor you have to do for a scan, where to go Commonly used scanning and imaging from dead tumor tissue. and how the scan works, so you can feel techniques: • Functional MRI (fMRI) tracks the prepared. Keep a record of your scan • Computed Axial Tomography (CAT use of oxygen and blood flow in and x-ray history. This information can or CT Scan) is a computerized x-ray that the brain as patients perform tasks. help doctors make informed treatment can show a combination of soft tissue, An fMRI can identify the motor, decisions and minimize your over- bone, and blood vessels. This is often sensory, visual and language centers exposure to radiation. the first test a person will receive in an of the brain which helps your doctor Be prepared to receive multiple scans emergency room (i.e. after a ). carefully plan for surgery. over time: first to detect the tumor; then • Magnetic Resonance Imaging (MRI) • Positron Emission Tomography to observe the site after surgery; later, can create clear and detailed three- (PET) scan uses a radioactive with follow-up care, to see if the tumor dimensional images of a brain tumor. An substance to visualize hypermetabolic returns. MRI is not often used with people who activity such as with malignant cells, have a pace maker or other metal device. or abnormalities from a tumor or scar

10 FRANKLY SPEAKING ABOUT BRAIN TUMORS TUMOR GRADING

The World Health Organization (WHO) Grade I Tumor Grade IV Tumor has created a standard by which all • Slow-growing cells • Abnormal cells which reproduce tumors are classified. There are over • Almost normal appearance under a rapidly 120 brain tumor classifications defined microscope • Very abnormal appearance under a by the WHO, based on the tumor cell • Usually not cancer microscope type and location, making this a very • Form new blood vessels to maintain complex diagnosis. Tumors are given a • Associated with long-term survival rapid growth name based on the cells where they arise, • Can potentially be cured with surgery and a number ranging from 1–4, usually • Areas of dead cells () in center represented by Roman numerals I-IV. Grade II Tumor Tumors can contain several grades of This number is called the “grade” and it • Relatively slow-growing cells cells; however, the most malignant cell represents how fast the cells can grow • Slightly abnormal appearance under determines the grade for the entire tumor and are likely to spread. This is critical a microscope (even if most of the tumor is a lower information for planning treatment and • Can invade adjacent normal tissue grade). Some tumors can change the way predicting outcomes. • Can recur as a higher grade tumor they grow and may become malignant Lower grade tumors (grades I & II) over time. Your doctor can tell you if your are not very aggressive and are usually Grade III Tumor tumor might have this potential. associated with long-term survival. • Actively reproducing abnormal cells

Higher grade tumors (grade III & IV) • Abnormal appearance under a grow more quickly, can cause more microscope damage, and are often more difficult to • Infiltrate adjacent normal brain tissue treat. These are considered malignant • Tumor tends to recur, often as a or cancerous. higher grade

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS 11 Tumor Types

With over 120 tumor types, it’s challenging to diagnose and treat brain tumors. The most common types found in adults are:

GLIOMAS production in pregnant women, and the begin from glial cells found in the Meningiomas are usually slow-growing, kidneys. Tumors in or around the pituitary supportive tissue of the brain. There are benign tumors that come from the outer gland can lead to problems with how several types of gliomas, categorized by coverings of the brain just under the . these glands function. Also, patients may where they are found, and where the This type of tumor accounts for about one have vision problems. Pituitary tumors are tumor begins. third of brain tumors in adults. They may frequently benign, and surgical removal exist for many years before being detected is often the cure. Some are treated with The following are gliomas: and are commonly found in the cerebral medication to shrink or stop the tumor • begin in the supporting hemispheres just under the skull. from growing. tissue cells (). In adults, they are most commonly found in the CENTRAL NERVOUS SYSTEM cerebrum where they cause pressure, Schwannomas are usually benign tumors (CNS) LYMPHOMA seizures and personality changes. that arise from the supporting nerve cells CNS Lymphoma is a malignant primary Astrocytomas are generally subdivided called vestibular schwannomas or acoustic brain tumor that originates from the into low (grade I & II) or high grade . Vestibular schwannomas often lymphocytes found in the brain, spinal (grade III & IV). High grade (grade IV) cause hearing loss, or problems with cord, or eyes. It typically remains confined are the most malignant of all brain balance or weakness on one side of the to the CNS. Treatment commonly includes tumors, known as glioblastoma. face. Surgery can be difficult because chemotherapy and/or radiation. • also start of where they are located. Sometimes in the supporting cells of the radiation (or a combination of surgery and brain, often found in the cerebral radiation) is used to treat these tumors. For more information, visit the hemispheres (cerebrum), causing National Cancer Institute’s seizures, headaches, weakness, PITUITARY TUMORS website (www.cancer.gov); the sleepiness, or changes in behavior. The is located at the base National Brain Tumor Society’s Oligodendrogliomas tend to respond of the brain and it produces hormones website (www.braintumor.org); the better to therapies and have a better that control other glands in the body; American Brain Tumor Association’s prognosis than most other gliomas. specifically the thyroid, adrenal glands, website (www.abta.org) They are grade II or III. ovaries and testes, glands for milk

12 FRANKLY SPEAKING ABOUT BRAIN TUMORS DIAGNOSTIC SURGERY PATHOLOGY REPORT

Surgery • . A surgical procedure to A pathology report contains the analysis Surgery is used to diagnose and treat remove a small sample of tissue from of brain tissue taken from a biopsy. brain tumors. Ideally, the brain surgeon the tumor so the cells can be examined Sometimes the pathologist can’t make an (neurosurgeon) can completely remove a under a microscope. exact diagnosis, so the tissue may be sent brain tumor with surgery. If complete There are two kinds of biopsy procedures: to another pathologist for a second opinion. removal is not possible, the surgeon will –– Open Biopsy: done during a remove as much as possible (called a . resection or ) without –– Closed Biopsy (also called negatively affecting the brain’s neurologic stereotactic or needle biopsy): functions. If a resection is not possible, when a needle is used to access and then a biopsy will be done (removing a remove a small selection of tumor small piece of tumor tissue) to diagnose tissue from an area that is difficult the tumor type and grade so treatment to reach. recommendations can be made.

• Craniotomy. A surgical procedure that involves removing a piece of the skull to access the brain. After the tumor is resected and tested, the bone is usually put back and held in place with The day I was told I had a 4.3 cm tumor in my head it was as if plates and screws. All tissue obtained someone tossed a hundred lead blankets on top of me. After it during the procedure is evaluated by a was removed, and the diagnosis was anaplastic ependymoma pathologist, the doctor who examines grade III, that’s when it rained boulders. But I’m still here. the tissue to identify the tumor type and grade. — Mark (from the National Brain Tumor Society’s Story Corner)

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS 13 THE TREATMENT TEAM

It’s likely that you will work with a large TO PARTNER WITH team of medical professionals for YOUR TREATMENT TEAM treatment. Keep in mind that you can be in charge of this process – and you can • Be involved in decisions. aim to like and trust the doctors you work • Learn about your diagnosis and your with. You have time to find a good team. treatment options by asking as many questions as you need to, and by learning how to access resources that may be helpful. • Talk to your treatment team about your worries and concerns. • Try to keep all medical appointments and be on time. • Know how to contact your treatment A very special patient of team between appointments, so you mine once told me “Feed can ask questions that need quick answers. your faith and your fears • Ask for access to your medical will starve to death.” records: either get copies or access your electronic file. This can help — Deanna Glass-Macenka, nurse when you meet a new specialist or if you’d like another opinion. Specialists

NEUROLOGIST A doctor specializing in disorders and diseases affecting the brain and spinal cord It is ideal to find a neurosurgeon (the central nervous system or CNS). Some with experience. Ask if at least: neurologists have training. OF THEIR PRACTICE NEURO-ONCOLOGIST IS WITH BRAIN An oncologist (cancer doctor) specializing 50% TUMOR PATIENTS in the treatment of cancers and tumors affecting the CNS.

NEUROSURGEON (IDEALLY A NEUROSURGICAL ONCOLOGIST) NEURO-ONCOLOGY NURSE CLINICAL PSYCHOLOGIST A surgeon specializing in the surgical A registered nurse specializing in A licensed professional who can help management of CNS disorders. If possible, patient education (including symptom patients and families adjust to the talk to a neurosurgeon who works with management) and support services for effects of illness on their lives. Neuro- brain tumor patients 50% of the time, brain tumor patients. psychologists specialize in brain functions or more. and how can affect a person’s abilities. At any point before, during or after NEURO-RADIOLOGIST treatment, the services of the following A radiologist (an expert in imaging REGISTERED DIETICIAN OR professionals can be valuable: techniques) specializing in the NUTRITIONIST interpretation of scans and images of the SOCIAL WORKER A trained specialist with knowledge about CNS. Some are specialists in brain tumors. how a person’s diet and daily nutrition Medical social workers specialize in will impact their health. The Academy of counseling and crisis intervention, and help NEURO-PATHOLOGIST Nutrition and Dietetics lists professionals locate appropriate care, legal resources, A doctor specializing in the diagnosis with oncology experience: and financial aid. of CNS disorders through microscopic www.eatright.org/programs/rdfinder examination of biopsied tissues (tumor cells).

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS 15 Cancer Support Community and the National Brain Tumor Society would like to recognize and thank all of those who contributed to the success of this book.

CONTRIBUTORS & EDITORS CONTRIBUTING PARTNERS DESIGN & PHOTOGRAPHY Deanna Glass-Macenka, RN, BSN, CNRN Accelerate Brain Cancer Cure Suzanne Kleinwaks Design, LLC Johns Hopkins Hospital Nicola Beddow Design

Lora Hays, L.M.F.T., R.P.T. Cancer Support Community Ralph Alswang Cancer Support Community Central Indiana Allison Harvey, MPH, CHES Photography

Ashley Varner, MSW, MBA, LCSW-C Musella Foundation Anne Arundel Medical Center Al Musella, DPM We’d like to extend a special thanks Johns Hopkins Brain Tumor to focus group, interview, and survey National Brian Tumor Society Education Group participants who shape the information Kristina Knight provided in this booklet. Erica Weiss, MPH, MSUP Michele Rhee, MBA, MPH Writer/Editor

Patrick Y. Wen, MD Dana-Farber Cancer Institute

CANCER SUPPORT COMMUNITY’S FRANKLY SPEAKING ABOUT CANCER SERIES

Cancer Support Community’s Frankly Speaking About Cancer: Brain Tumors program is part of a national education program that provides support, education, and hope to people affected by cancer and their loved ones.

Frankly Speaking About Cancer booklets feature information about treatment options, how to manage side effects, the social and emotional challenges of the diagnosis, and survivorship issues.

For more information about this program, the Frankly Speaking About Cancer series or Cancer Support Community, please visit our website at www.cancersupportcommunity.org or call us toll-free at 1-888-793-9355. WWW.CANCERSUPPORTCOMMUNITY.ORG 1.888.793.9355

Cancer Support Community and the National Brain Tumor Society together with our partners provide this information as a service. This publication is not intended to take the place of medical care or the advice of your doctor. We strongly suggest consulting your doctor or another health care professional to answer questions and learn more.

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CANCER SUPPORT COMMUNITY AND THE NATIONAL BRAIN TUMOR SOCIETY THANK OUR PROGRAM PARTNERS: