Brain Tumors I won’t let a brain tumor defeat me or the people I love. It’s a scary diagnosis but now I know the facts.

— Brain Tumor Survivor Table of Contents

CHAPTER 1 / THE EMPOWERMENT APPROACH...... 1 You are not alone...... 3 Gaining control...... 3 10 actions you can take...... 4

CHAPTER 2 / UNDERSTANDING BRAIN TUMORS...... 5 What is a brain tumor?...... 7 Defining brain tumors...... 7 Diagnosing a brain tumor...... 9 The treatment team...... 14

CHAPTER 3 / TREATMENT OPTIONS...... 17 Empowered communication...... 18 Basic treatments & medications used for brain tumors...... 19 Long-term planning...... 29 Managing late effects...... 30 Hospice...... 30

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS...... 31 Location matters...... 32 Learn what to expect after your treatment...... 34 Rehabilitating physical symptoms...... 35 Headaches...... 36 Seizures...... 36 Blood counts...... 38 Gastrointestinal (GI) problems...... 38 Fatigue...... 39 Cognitive and behavioral changes...... 40 Anxiety and depression...... 42 Hormonal changes, fertility and sexuality...... 43 Complementary or alternative medicine (CAM)...... 44

CHAPTER 5 / QUALITY OF LIFE...... 47 Coping with your diagnosis...... 48 The value of support...... 49 Relationships...... 51 Spirituality...... 53

CHAPTER 6 / PRACTICAL CONSIDERATIONS...... 55 Going back to work...... 56 Employment laws and financial support...... 58 Managing medical costs...... 59 Practical, legal, and estate planning...... 61 Death and dying...... 62

CHAPTER 7 / CARE FOR THE CAREGIVER...... 63 Care for yourself...... 64 Making important decisions...... 65 Moving forward...... 67

CHAPTER 8 / RESOURCES...... 69 PROLOGUE

No one is ready to receive a brain tumor diagnosis, yet the National Throughout this book you will see symbols that can help you identify Cancer Institute estimates that 66,300 people will be diagnosed for useful information: the first time this year alone. In fact, there are over 688,000 people Look for this symbol to in the United States who are currently managing life with a brain find helpful tips. or central nervous system tumor. Look for this symbol to find questions for your doctor, or yourself.

In this book, we’ve collected valuable This book was created by theCancer Look for this symbol to resources, facts, and tips about the Support Community and the National find “Things to Remember” medical, practical, and emotional effects Brain Tumor Society, in partnership with from each chapter. of brain tumors to help you (or an neuro-oncology and psychosocial experts Look for this symbol to find advocate) gain control and learn how to and the advocacy groups, Accelerate useful organizations and cope with the diagnosis. Brain Cancer Cure and Musella resources for more in-depth Foundation. It is also based on research information. You may find that when you feel with 407 patients and caregivers in a empowered to make choices you’re national survey and personal interviews comfortable with, you can develop a with several thoughtful, honest and renewed perspective on hope. This book inspiring individuals. can help guide you. Flip through the pages to find information that seems most helpful now, and refer back to other sections later.

PROLOGUE III The brain is an elaborate, elegant, THE BRAIN and sophisticated mass of tissue and nerve cells. It seamlessly controls our personality, our senses, helps regulate The brain controls our: vital body functions, and controls how Personality: thoughts, memory, intelligence, speech, judgment, and emotions we move in our environment. Senses: sight, hearing, taste, smell, and touch Vital body functions: heart rate, breathing, and blood pressure When abnormal cells grow in the brain Movement: coordination, balance, and negotiating space to develop a tumor, it can disrupt how we function and will require treatment considerations that balance how the tumor is treated with how well our brain operates.

Source: National Institutes of Health, National Cancer Institute

IV FRANKLY SPEAKING ABOUT BRAIN TUMORS I’m a huge believer CHAPTER ONE / that we have the capacity to do great things, even recover from extraordinary THE EMPOWERMENT APPROACH happenings. It is within us. And with some help along the way, we can tap into our inner “Superman.”

— Tony, patient

The Empowerment Approach CHAPTER ONE / THE EMPOWERMENT APPROACH CHAPTER 1/THEEMPOWERMENTAPPROACH 10 actionsyou can tak Gaining control You are notalone ...... e ...... 1 3 3 4 . The Empowerment Approach

Everyone’s experience with a brain tumor is different – yet a similar sense of fear is felt by anyone who receives a diagnosis. Many people learn to manage the fear, insecurity and anger. You can take actions that give you more control over the experience every step of the way. You can take an empowerment approach.

1 THINGS TO REMEMBER

†† It’s normal to feel scared, insecure, and †† Take time to process the information angry about a brain tumor diagnosis– you’re given. You probably have enough and it is possible to deal with these feelings. time to take a deep breath and think about your next steps. †† You can take an empowerment approach to gain a sense of control over this disease. †† Talking openly can become a priority for your family and with your doctors (see Consider the 10 Actions You Can Take †† Chapter 5 for tips). (See p. 4) Remember what’s important to you and You are not alone. †† †† think about your goals and values. Aim to †† No question is wrong to ask. enjoy the things that make your life special.

CHAPTER 1 / THE EMPOWERMENT APPROACH 1 Over the last ten years I was diagnosed with five hemangiopericytoma BE EMPOWERED tumors. I have had one craniotomy and three Gamma Knife surgeries. • Access resources for practical Since my first surgery I’ve hiked to the top of Mt. Whitney and Half information and support Dome, gone white water rafting and hang gliding, learned to rock • Partner with your doctor through climb and ride a motorcycle, got married, and had a beautiful son good communication that I never thought I could have. I am not sure what the future has • Make active choices in your treatment in store for me, but I will not give up! • Make changes in your life that — Tiffany (from the National Brain Tumor Society’s Story Corner) are important to you

Being empowered is about choosing to The Patient Empowerment Concept Don’t let this disease off the hook adopt a series of actions, behaviors, and states: People who actively participate without a major fight. attitudes that can help improve your in their fight for recovery along with quality of life. their health care team will improve the — Richard (from the National Brain Tumor Society’s Story Corner) quality of their life and may enhance the possibility of their recovery.

2 FRANKLY SPEAKING ABOUT BRAIN TUMORS YOU ARE NOT ALONE GAINING CONTROL

When confronted with a brain tumor Your involvement in the choices you with your health care team to get answers it is common for people to feel alone, make with your medical team can make to your questions. (Look for sample confused, and fearful of the unknown. a big difference in your experience and questions throughout this book to help This time is challenging, but can your quality of life. you frame your own questions.) You may be managed. No one coping with a feel more confident about what to do This includes acknowledging your brain tumor has to do it alone. next if you take part in making plans and physical, social, and emotional needs. finding a network of people to help you. Regardless of your diagnosis, most people Most importantly, it includes partnering (patients and caregivers alike) find it helpful to talk about their situation and sort through information with others who have a personal experience with No one coping brain tumors. You can talk to people with a brain tumor with experience through support groups, counselors, online chat groups, or has to do it alone. organizations that offer over-the-phone expert and practical support.

Throughout this book, especially in Chapters 5-8, you will find information about how to access services and trained experts. 10 Actions You Can Take

1. Take one day at a time, and make 4. Reach out to other brain tumor 7. Learn to relax. It can help to feel one decision at a time. Try to resolve survivors. It’s often comforting to calm. Try relaxation or meditation only today’s problems. The future talk with others who can understand programs to reduce stress. Relaxation is always unknown – for everyone. what you’re experiencing, because is something that you might have to Life with a brain tumor can feel they’ve also been there. See p. 69 learn, or build it into your day, but it overwhelming but taking one small to find organizations that can help is important. step at a time can help. you connect. 8. Make healthy lifestyle choices. It’s 2. Partner with your health care team. 5. Acknowledge and express your never too late to make changes that Having an honest relationship with feelings. Take time to listen to will improve your well-being. Every your medical team can help you feel yourself. Find ways to express your small step you take to eat better, get a greater sense of trust and control. feelings through journaling, physical more exercise, and find more humor Consider a second or third opinion activity, or creative pursuits, or in life can make you feel better. from experts, ideally at a brain tumor consider talking to a social worker Find a new perspective. center. Carry a notebook with you or or psychologist. 9. A brain ask someone to write down the things tumor diagnosis is life changing. It can Establish a reasonable amount of you’d like to ask your doctor. Refer 6. be difficult, but also an opportunity control over your life. back to your notebook to help you Having a brain to reprioritize goals and reframe your remember what your doctor said. tumor can make it difficult to feel in self-image. charge of your life and your care. At You can find hope in many things. 3. Ask your family and friends to times you may feel too exhausted 10. help. Family and friends often want or are unable to think clearly. Work When you find something that gives you hope, you may feel better to help but don’t know how. Offer with your medical team to develop a equipped to handle challenges. Draw specific examples, such as: driving to plan that gives you as much control upon family connections, cultural appointments, researching financial over your life as you can comfortably customs, and spiritual beliefs. If a cure support, making phone calls, or just handle. is unlikely, one can always hope for talking. Reach out to your nurse or small things that make each new day social worker to learn about available better in some way. support services when you need extra help.

4 FRANKLY SPEAKING ABOUT BRAIN TUMORS

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 Pathology report Diagnostic surgery Tumor types Tumor grading 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’ †† †† central nervous system 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 medication 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 Spinal Cord BRAIN STRUCTURES AND THEIR FUNCTIONS Together, the brain and spinal cord (the central nervous system (CNS)) control the physiological and psychological functions FRONTAL LOBE • movement PARIETAL LOBE of our body. Generally our brain includes • reasoning • telling right three major parts: • behavior from left • memory • calculations • The cerebrum controls thinking, • decision making • sensations learning, problem solving, emotions, • personality • reading • planning • writing speech, reading, writing, and voluntary • judgment movement. • initiative • inhibition • The cerebellum controls movement, • mood OCCIPITAL LOBE 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 Cancer Institute’s brain tumor 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 tissue 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, chemotherapy 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 % Glioblastoma OF ALL OTHER CANCERS LATER 7% Astrocytoma DEVELOP A BRAIN METASTASES 63% BENIGN 35% Meningioma TUMORS 14 % Pituitary (41,980 Cases) 9% Nerve Sheath 2% Lymphoma 33% Other 37% (Ependymoma, 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 headaches, seizures or convulsions, 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, nausea, 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 contrast agent (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 seizure). 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 (necrosis) 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 primary tumor types found in adults are:

GLIOMAS MENINGIOMAS production in pregnant women, and the Gliomas 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 skull. 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 • Astrocytomas begin in the supporting hemispheres just under the skull. from growing. tissue cells (astrocytes). In adults, they are most commonly found in the SCHWANNOMAS 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 neuromas. 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. • Oligodendrogliomas 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 pituitary gland 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 • Biopsy. 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 craniotomy. resection or debulking) 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 oncology 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 brain damage 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 WHAT A GIFT! — Dolores (from the National Brain Tumor Society’s Story Corner)

I know that it sounds crazy, but if I hadn’t been blessed with a brain tumor, I would not know the things that I know today. I would not have the courage to live every day as if it were my last. I now know what really matters in life. Today is a gift, and that is why it is called the present! I have so much to be grateful for but I never realized it before, until it was almost taken away from me.

My journey began in the summer of 2008, after months of enduring excruciating pain in my head and finally deciding to go to the doctor. On April 13, 2009, I was diagnosed with a meningioma tumor the size of a baseball that was located behind my left ear. I was stunned, this was the last thing that I expected and all I could think of was…”How was I ever going to fit this into my busy schedule?” This is the kind of diagnosis that allows fear to set in no matter how strong one thinks they are.

Thus, my search began to find my purpose in life, to discover my inner self, and to further understand that everything happens for a reason. Since then, I no longer fear death. Fear of death causes fear of life. Where once I lived my life going 100 mph each day, stressed out and angry, I have now found an inner peace that I have never known before. Now I pray for the wisdom and inspiration to help others find the peace I feel.

16 FRANKLY SPEAKING ABOUT BRAIN TUMORS CHAPTER THREE / TREATMENT OPTIONS

— Darren, patient — Darren, There are no clear clear no are There I had so foranswers me, emotionally to learn that brain my medically, and something is care tumor to manage have for we’d why That’s time. a long important so it was for to interview us, and me, the bestfind doctors for us. Options Treatment CHAPTER THREE / TREATMENT OPTIONS

CHAPTER 3/TREATMENT OPTIONS Hospice Managing late effects planning Long-term Treatment after recurrence More treatment optionsforhigh grade tumors Treatment questions Treatment planning forhigh grade tumors Treatment forlow grade tumors Basic treatments &medications forbrain used tumors Empowered communication ...... 17 19 21 21 22 2 28 29 3 3 18 3 0 0 Treatment Options

Once you have a medical team in place, talk to them about your questions, fears, and concerns. You and your loved ones are the only people who know everything about your care and what you need. It’s critical to speak up and learn about all of your treatment options before you decide what care you need.

THINGS TO REMEMBER

3 Talk openly and honestly with your medical _ Ask about clinical trials. This is the only †† team. It may seem difficult, but it will help way to access some promising new you get better care. treatments. _ Ask about how to maintain a high quality †† Keep a notebook and schedule planner to of life over time. track daily questions, side effects, notes, and appointment information. _ Ask about palliative care or other options to help manage your symptoms. †† Learn about your treatment options over the short and long term. †† If you feel overwhelmed: contact the Cancer Support Community’s “Open to Options” †† All questions are valuable. treatment decision counseling program. _ Ask about the risks and benefits of each (See p. 27) treatment option presented. _ Ask about what to expect at the time of treatment, just after treatment, over the course of recovery, and in the long-term.

CHAPTER 3 / TREATMENT OPTIONS 17 EMPOWERED COMMUNICATION

To talk more effectively with your health time with the nurse? Ask these types QUESTIONS ABOUT care team: of questions up-front so you and your TREATMENT OPTIONS doctor can maintain a productive 1. Keep a notebook. A notebook can relationship. 1. What is the goal of treatment for me? help you keep track of questions and 2. What are my treatment options? issues that you’d like to discuss at 3. Bring someone with you to 3. Am I eligible for any clinical trial- appointments. If you’re not feeling appointments. It is hard to manage and when? What is the goal of the well enough to write everything down, all of the information and emotions. A trial(s)? ask someone to help. This notebook family member or friend can be very 4. What are the possible side effects of can include: helpful as an extra set of ears, to help each treatment option? a. Questions take notes, and to discuss what you 5. What can I do to prepare for heard or remember things you might b. Side effects or symptom tracking treatment? forget. 6. What will my recovery look like? c. Supplements 7. What is the likelihood this tumor will d. Other medications 4. Use a schedule-planner to organize return after treatment? help. In addition to a regular calendar, e. Your “to do” list 8. What additional treatments might consider an online resource (like I need? 2. Know how to get your questions www.rci.lotsahelpinghands.com or 9. Will I need rehabilitation services, answered. Will there be enough www.mylifeline.org) to help you stay like speech therapy or physical time during appointments to talk organized and recruit help when you therapy? through your questions? Is email need it. You can plan for things like a 10. How can I reach you if I have better? Do you need to schedule an ride to medical appointments, or help questions after today? extra appointment just to talk through with dinner or childcare. 11. Who would you recommend that I everything? Is it better to schedule a see for a second opinion?

18 FRANKLY SPEAKING ABOUT BRAIN TUMORS BASIC TREATMENTS & MEDICATIONS USED FOR BRAIN TUMORS

Treatment for brain tumors is based on: • Hydrocephalus – causes pressure in WHEN TO CONSIDER A SECOND OPINION • Your age, overall health, and medical the brain from cerebrospinal fluid. If history removing all or part of the tumor cannot • If you feel uncertain about your initial resolve this problem, a shunt to re-direct • The type, location, and size of the tumor diagnosis, recurrence, or response to the path of fluid may be required. treatment. • How likely the tumor is to spread • Other common symptoms – can • If you wish to have access to or recur additional experts in the treatment of include muscle weakness, or changes brain tumors, or wish to have access • Your tolerance for specific in sensation, cognitive functions, and to clinical trials. medications, procedures, or therapies personality. • If you feel that your physician is • Your opinion or preference limiting your treatment options Treatment for these symptoms may include: or has told you that no further The first step is to address symptoms: Antiseizure/Antiepileptic Drugs treatment can help you – but you want more information or believe • Seizures – range from visual problems, (AEDs) there may be other options. to sensations such as numbness or Antiseizure drugs treat and prevent • If you just want to be sure that you’re tingling, to feelings of being disconnected seizures associated with pressure in on the right course. and unable to speak, to uncontrollable the brain from a tumor, from surgery, or body movements. (See p. 36). from an irritating treatment. In general, • Brain tissue swelling /edema – AEDs are recommended around the causes problems like memory loss, time of surgery, or for a longer period of personality change, confusion, speech time for people with a history of seizures. problems, visual problems, muscle Some people experience sleepiness, weakness, sensory alterations, and unsteadiness, or confusion when taking decreased levels of consciousness. AEDs. If a rash occurs, your doctor must be contacted immediately and AED use • Headaches – are very common. must stop.

CHAPTER 3 / TREATMENT OPTIONS 19 Steroids Surgery SOME PLACES TO Steroids are used to treat and prevent The ultimate goal of surgery is to remove CONTACT FOR REFERRALS swelling and pressure in the brain. They as much of the brain tumor as possible. • are very helpful, but they also cause side Removing the tumor often relieves the You can ask your primary physician to recommend a effects such as weight gain, “moon face,” symptoms caused by it. Surgery is only neuro-oncology expert mood changes, difficulty sleeping, muscle possible if the tumor is in a location • The National Brain Tumor weakness, osteoporosis, or joint pain, that can be reached without damaging Society website can provide increased risk for infections and bruising, important brain functions. It is critical to links to information and locations an increase in blood sugar, and possibly balance the possible impacts of surgery of treatment facilities near you. gastrointestinal bleeding. It is important with the benefits. 1-800-934-2873 or www.braintumor.org to take steroids to reduce swelling, but it Sophisticated neurosurgical navigation • The National Cancer Institute is equally important to manage their side equipment is used in nearly all brain can locate a Comprehensive effects. If you experience these types of surgery centers to map around the brain Cancer Center near you. 1-800- side effects, talk with your doctor or nurse 422-6237 or www.cancer.gov/ to the tumor. The best comparison is like so they can help you with strategies for researchandfunding/extramural/ a GPS map for the brain. Brain mapping relief, including changes to the dose and cancercenters for surgery involves a special scan that is type of steroid used. This can take some synchronized with operating equipment time. (More in Chapter 4) before surgery so the surgeon can identify abnormal brain tissue and provide the most complete and safest surgery possible.

20 FRANKLY SPEAKING ABOUT BRAIN TUMORS TREATMENT FOR LOW TREATMENT PLANNING FOR GRADE TUMORS HIGH GRADE TUMORS

Often, low grade tumors (grade I and Higher-grade tumors are more difficult The doctor didn’t II) are treated with watchful monitoring to remove and require additional speak plainly to or surgery alone. Though all tumors are treatments beyond surgery, such as us. I think it’s monitored with repeat scans, grade II radiation, chemotherapy, or a clinical tumors are watched more closely after trial if one is available. Microscopic tumor important to learn surgery and over time to make sure there cells can remain after surgery and will as much as you can is no recurrence. eventually grow back. All treatments, about what to expect over time, therefore, are intended to prolong and Try to talk openly about how you’re doing so you can feel more prepared. improve life for as long as possible. with your family, close friends, and your — Candice, caregiver employer so that you can make plans Try to ask straight-forward questions that with them as you strive to return to more consider your quality of life during and regular routines and responsibilities. after treatment. There may not be clear answers, but it’s important to ask your questions anyway.

BOOK RECOMMENDATIONS FOR MORE INFORMATION

Johns Hopkins Patient’s Guide to Brain Cancer by Deanna Glass- Macenka and Alessandro Olivi

Navigating Life with a Brain Tumor by Lynne P. Taylor, Alyx B. Porter Umphrey and Diane Richard

CHAPTER 3 / TREATMENT OPTIONS 21 Treatment Questions

TREATMENT QUESTIONS TREATMENT QUESTIONS The National Comprehensive FOR ALL BRAIN TUMORS FOR HIGH GRADE TUMORS Cancer Network (NCCN) guidelines set the standard for 1. What are the risks and benefits of 1. How can I tell the difference between treating brain tumors. The way that surgery for me? treatment side effects and brain different institutions and physicians tumor symptoms? 2. What can I do to manage symptoms approach treatment starts with these or side effects? 2. What are the standard guidelines guidelines, but may differ with 3. Will my symptoms go away? to treat my tumor vs. what you institutional or personal opinions. It is recommend? Why? worth looking at the NCCN guideline 4. Will I experience different symptoms for your tumor type as you consider or cognitive problems after surgery? 3. Can you recommend a clinical trial for my care? treatment opinions. www.nccn.org/ 5. Where and how big will the incision professionals/physician_gls/f_ 4. What will my life be like after be? Will you have to shave my head? guidelines.asp#cns treatment? 6. How long will I be hospitalized after surgery? 5. What is the likelihood that radiation and chemotherapy will help? What 7. Who will be involved with care for my are the pros and cons of my options? recovery? How long? 6. If I decide not to undergo further 8. Will I need rehabilitative care such treatment, what will my progression as speech, physical, or occupational look like? therapy? How long? 7. Can you recommend a social worker 9. Will I have to see a neuro-oncologist or support group to help me and my for chemotherapy or radiation family cope with my future life? oncologist for radiation therapy? 8. What else can I do to improve my 10. Who is responsible for my follow-up care? quality of life, and the quality of life 11. Do you anticipate a recurrence of this of those who care for me? type of tumor? 12. Can I donate my tumor tissue to research?

22 FRANKLY SPEAKING ABOUT BRAIN TUMORS MORE TREATMENT OPTIONS FOR HIGH GRADE TUMORS

Radiation Therapy Side effects from radiation may include Radiation therapy options:

When surgery is not enough, radiation swelling, fatigue, headaches, nausea, • External beam fractionated radiation treat­ment uses x-rays and other forms of possible hair loss, and changes in your is the standard treatment used for all radiation to destroy tumor cells, or delay sensations or movement. Damage to patients with high grade malignant tumor growth. This can also be used normal brain cells is often subtle, but gliomas, typically given in an outpatient when tumor cells are found in hard-to- it can affect mental sharpness and clinic. If you need help with trans­ reach areas. the ability to think clearly. Cognitive portation to a radiation appointment, impairment can worsen to become a you can ask if transportation benefits By planning treatment carefully with long-term problem for some people. are available through your hospital brain mapping techniques, radiation or insurance. oncologists try to avoid killing healthy There are ways to reduce the side effects cells, thereby reducing side effects. You from radiation treatment, so as always, it may wear a special mask that fits around is important to tell your medical team how your head to hold your head in place you feel so they can help provide relief. during radiation treatment.

For higher grade gliomas, radiation treatment is often given with low daily I know now that I waited too long doses of chemotherapy (such as before I got my headaches checked temozolomide (Temodar®) to help out. Now I want to bring awareness delay a recurrence and allow patients to live longer. to this disease. I overcame my brain tumor, and I want people to know they can overcome it, too.

— Anthony, patient • Stereotactic radiosurgery is a nausea, fatigue, weight loss, and lomustine (CCNU), or procarbazine technique that focuses high doses gastrointestinal problems. Patients are (Matulane®). TMZ plus radiation is of radiation at the tumor from many monitored closely to manage problems the standard treatment for high grade different angles. This form of radiation, that may occur. gliomas. Some doctors treat anaplastic often performed with the Gamma oligidendrogliomas with procarbazine, Chemotherapy is provided in three forms: Knife® unit or the newer CyberKnife® vincristine, and CCNU (known as PVC unit, can be used to treat both benign • Chemotherapy wafers containing drug chemotherapy). and malignant tumors, but is most called carmustine or BCNU are appropriate for tumors with well- inserted directly into a high grade Oral chemotherapy is not always effective defined edges. glioma during surgery. The wafer, on brain tumors. This is because of the named Gliadel®, slowly dissolves over body’s naturally protective system in • Proton beam radiation therapy is a 2-3 weeks to kill tumor cells. the brain and cerebro-spinal fluid. This type of high-energy, external radiation protective mechanism is known as the therapy that kills tumor cells with little • Intravenous chemotherapy is when blood-brain barrier and it prevents damage to nearby tissues. It is most the chemotherapy is given through a harmful substances from entering the CNS. appropriate for tumors located at the vein, in a clinic setting. Examples for base of the skull or behind the eyes. high grade gliomas include: You can ask your doctors which –– Nitrosurea: BCNU chemotherapy they think would be Chemotherapy –– Vinca alkaloids: vincristine appropriate for your treatment and why. Chemotherapy is the use of drugs to kill –– Platinum Analogues: carboplatin, You can also ask your insurance company cells that rapidly divide, such as cancer cisplatin what drugs are covered. The decision of cells. It is prescribed when surgery is not whether or how much chemotherapy • Oral Chemotherapy is when enough to remove a tumor – most often you’d like to use is ultimately up to you. chemotherapy is given in a pill, by for higher-grade tumors. Low doses may mouth. Examples include: TMZ reduce the impact of chemotherapy- or temozolomide (Temodar©), related side effects, such as hair loss,

24 FRANKLY SPEAKING ABOUT BRAIN TUMORS Clinical Trials Clinical Trial Phases: QUESTIONS TO ASK Clinical trials are studies designed to test • Phase I: Determine maximum ABOUT CLINICAL TRIALS the most promising new treatments. tolerated dose…how much, how safe, 1. Do I qualify for any available clinical People participate in a clinical trial for how often? trial(s)? a variety of reasons: to try a new and • Phase II: Evaluate effectiveness…does 2. What is the purpose of the study? promising treatment method, to it do any good? contribute to the development of future 3. How do the possible risks and • Phase III: Compares a new treatment benefits of the new treatment treatments, or to help find a cure. Most to the standard treatment to determine compare with my other treatment clinical trials require a patient to qualify options? which is more effective…is the new with certain medical criteria. Some trials treatment better? 4. Does the study sponsor pay for my can be joined before your first surgery, treatment in the clinical trial? others during radiation, others at the 5. Will there be any travel, housing, point of recurrence. You can ask your MORE ABOUT or childcare costs that I need to doctor if you are eligible for a trial, or get CLINICAL TRIALS consider while I’m in the trial? a second opinion at any time. National Brain Tumor Society’s 6. If the new treatment has negative Clinical Trials Matching Service effects, what will be done for me and Though participants may be among 1-877-769-4812 who will cover the cost? the first people to benefit from a new www.emergingmed.com/networks/NBTS 7. When and where will the clinical treatment, there can be unexpected side Cancer Support Community’s trial’s findings be reported? effects, or the new treatment may not Clinical Trials Matching Service 8. If I use Gliadel, will it restrict me from be better than or even as effective as the 1-800-841-8927 entering a trial? standard treatment. Patients are provided www.cancersupportcommunity.org 9. Can I have a sample of my tumor search: Clinical Trials with very clear information about the tissue frozen, so I can be a candidate for a vaccine in the future, or genetic treatment under investigation before they National Cancer Institute 1-800-422-6237 tests? decide to participate. If they do wish to www.cancer.gov/clinicaltrials participate, they are monitored closely.

CHAPTER 3 / TREATMENT OPTIONS 25 Targeted Therapy Electric Field Treatments ADVANCES BEING MADE Targeted therapies focus on specific Electric field treatments are a new IN BIOMARKER RESEARCH elements of a cell, such as molecules or strategy to kill brain tumor cells, utilizing pathways required for cancer cell growth a device called NovoTTF™ (by Novicure), Advances are being made in the area of biomarker research, where specific (i.e., cell proteins) and use them as a that is placed along the scalp. It provides proteins (biomarkers) found in the target. When a targeted therapy attaches a mild electric current (electrodes) RNA and DNA of brain tumor cells itself to a designated protein in a cancer that may stop the growth of tumor cells can be used for cancer detection cell, it can stop certain functions in the without harming normal brain cells. and treatment. Biomarker research cell. For example: There is some controversy about the is a foundation for personalized medicine and provides hope for cancer © efficacy of this therapy. • Bevacizumab (Avastin ) is an FDA cures. Research is ongoing and very approved targeted therapy that affects promising, but more time is needed. Other promising treatments still in a tumor’s ability to make new blood When a patient donates tissue samples vessels. It can be helpful for recurrent development are: for biomarker research, it helps bring glioblastomas in adults. researchers one step closer to finding Vaccine Therapy a cure. To learn more about donating Vaccine therapy uses the patient’s tissue samples: www.cancer.gov/ Other targeted and biologic therapies immune system to recognize and then cancertopics/factsheet/Information/ continue to be tested in clinical trials. donating-tissue-research, or look attack cancer cells. Substances made with Examples include tyrosine kinase inhibitor online for information about The brain tissue or made in a laboratory are (TKI) therapy and anti-vascular endothelial Cancer Genome Atlas project. used to boost, direct, or restore the body’s growth factor (VEGF) therapy. For information about innovative natural defenses against cancer – similar new research and treatments, visit to the way a flu vaccine helps the body Accelerate Brain Cancer Cure’s website fight the flu. (www.abc2.org).

26 FRANKLY SPEAKING ABOUT BRAIN TUMORS Immunostimulatory Molecules Clinical trials are planned to begin in IF YOU NEED HELP WITH MAKING TREATMENT DECISIONS 2014 for the use of Ipilimumab in the TM treatment of glioblastoma. Ipilimumab Open to Options is a free telephone or in-person counseling program provided by trained professionals at the Cancer Support Community. It empowers you to: (YervoyTM) is a monoclonal antibody • Communicate your concerns clearly (a lab-made antibody used for targeted • Create a list of questions for your doctor or health care team that will help therapy) that has been found to be you address your specific needs beneficial in the treatment of melanoma, • Organize your questions for specialists to help you get the most helpful and is now being tested on glioblastoma. answers from the right people It stimulates the immune system to help It works! Patients who participated in this program: destroy unwanted tumor cells. • Were less anxious about their medical appointments • Felt that their appointments went more smoothly Gene Therapy • Felt better about the care decisions they made Gene therapy uses engineered genes that Open-to-OptionsTM can selectively kill cancer cells, stop their call: 1-888-793-9355 growth, or stimulate the immune system to www.cancersupportcommunity.org fight them. This is done with the intro­ duction of engineered genes that can enter into cells for treatment because they affect the way cancer cells behave. Gene therapy can be introduced to cancer cells by inserting them into viruses, stem cells, liposomes, or other immune cells. Gene therapy has been very promising in pre-​ clinical trials.

CHAPTER 3 / TREATMENT OPTIONS 27 TREATMENT AFTER RECURRENCE

If you are diagnosed with a recurrent Most patients with high grade glioma It’s also helpful to ask if you are eligible brain tumor, you will want to consider receive a lifetime dose of radiation for a clinical trial and to learn how it may how additional treatment can impact shortly after diagnosis. It is important to benefit you. your quality of life. Options available be aware of your risk to normal brain You may benefit from retreatment for retreatment include surgery with tissue if additional radiation treatment if you have: or without chemotherapy wafers, is offered. In rare cases, when a good chemotherapy (intravenous or orally), period of time has passed since initial • Good overall health possibly radiation, and/or clinical trials. treatment, special techniques, such as • A smaller amount of tumor present stereotactic radiosurgery or brachytherapy, Supportive care is most helpful when • A longer interval (i.e., more than may allow additional radiation to be there is a cancer recurrence – regardless one year versus less than one year) directed to the tumor safely. However, of additional treatment. Supportive or between your original treatment and there is no proof that these radiation palliative care refers to strategies that ease the recurrence treatments improve survival or provide pain and other symptoms. (See p. 29) any benefit to the patient compared to supportive care alone.

If you are diagnosed with a recurrent brain tumor, you may want to consider how additional treatment can impact your quality of life.

28 FRANKLY SPEAKING ABOUT BRAIN TUMORS LONG-TERM PLANNING

I had brain surgery and the aftermath left me partially paralyzed. THE GOALS OF I endured intense physical and occupational therapy. Being partially PALLIATIVE CARE paralyzed everyone thought dancing would be over for me, but I was • To treat symptoms that impact a determined to start dancing again. Eight years later, I have regained person’s quality of life, such as pain, nausea, insomnia, cognitive changes, a sense of movement which was imperative. Dance is my life. and other physical symptoms caused — Zazel-Chavah (from the National Brain Tumor Society’s Story Corner) by brain cancer or its treatment • To treat a patient’s emotional and social needs, including symptoms All brain tumor patients can develop a • Rehabilitation care for post-surgical such as anxiety or helping with plan with their treatment team, not just or other treatment to help you regain difficult family relationships for immediate treatment, but also for lost motor skills and muscle strength. • To address a patient’s spiritual needs recovery and long-term management. Speech, physical, and occupational or concerns This may include follow-up scans, therapists may be involved in this aspect • To address a patient’s practical follow-up treatment, rehabilitative care, of care, based on rehabilitative needs. needs, such as transportation and psychiatric care, and/or estate planning. • Supportive care/Palliative care financial concerns Talk with family and your medical team to minimize the side effects of the • To provide support for the patient’s family, friends, and caregivers about what you need. tumor or treatment and provide During and after treatment, all patients maximum support for the caregiver. can receive a plan for: Palliative care maximizes quality (as well as quantity) of life for the patient • Continuous follow-up care to manage and those who care for them—not just recovery from treatment, to detect if the at the end of life but throughout the tumor returns, and to manage late course of disease. effects of treatment. Your medical team can tell you how often you should receive follow-up care over time.

CHAPTER 3 / TREATMENT OPTIONS 29 MANAGING LATE EFFECTS HOSPICE

Treatment, and managing a brain tumor, High grade brain cancer typically Hospice providers work together to can feel like a long haul. “Late effects” cannot be cured and deciding when to support the caregiver, meet the patient happen well after treatment is over, and stop aggressive treatment is difficult. and family’s needs, and significantly they can vary for people based on age, Caregivers don’t have to manage this reduce suffering for everyone. Hospice general health, tumor type, and location. decision alone. care doesn’t end when a patient dies – it remains as a service for the family Late effects to manage with help from When a person is unlikely to live longer members left behind, to aid in their your medical or palliative care team than six months, hospice care is often grieving and to help them get back on can include: recommended. It involves the care of all their feet. • Physical disabilities aspects of a patient and family’s needs, • Learning and cognitive disabilities including the physical (i.e., pain relief), psychological, social, and spiritual • Behavioral changes and emotional issues For more information about aspects of suffering. It does not typically hospice, go to www.hospicenet.org. • Hormonal problems including involve “heroic measures” to keep a diabetes and infertility patient alive (for example, it may not • Damage to internal organs or other provide fluids or nutrition). body systems from treatment

Hospice is about comfort. This care may I appreciate knowing that I can Your medical team has strategies to help. be given at home, in a nursing home or call someplace like the Cancer Palliative care options can also relieve at a hospice facility. Usually multiple Support Community’s hotline to discomfort and provide extra assistance care providers are involved, including a to families as they manage day-to-day physician, registered nurse, nursing aide, talk to someone – People around stressors. When a caregiver needs help, a chaplain or religious leader, a social you love you so much, but they sometimes family, friends, or paid worker, and volunteers. can’t fix it. professionals can also step in (See — Candice, caregiver Chapter 4 and 7).

30 FRANKLY SPEAKING ABOUT BRAIN TUMORS It is important to explore what a patient hopes for.

Is it: freedom from pain or CHAPTER FOUR / MANAGING COMMON SIDE EFFECTS other physical symptoms, independence for as long as possible, participating in a family event or gathering, making peace in a troubled relationship, dying with dignity? What people hope for frequently changes throughout life, but rarely does anyone stop hoping.

— Deanna Glass-Macenka, RN Managing Common Side Effects CHAPTER FOUR / MANAGING COMMON SIDE EFFECTS CHAPTER 4/MANAGINGCOMMONSIDEEFFECTS Complementary oralternativeComplementary (CAM) medicine whatLearn after your to expect treatment mattersLocation Hormonal changes, andsexuality fertility anddepressionAnxiety Cognitive andbehavioral changes Fatigue Gastrointestinal (GI)problems Blood counts Seizures Headaches Rehabilitating physical symptoms ...... 31 3 3 3 3 3 3 3 3 40 42 4 44 2 4 5 6 6 8 8 9 3 Managing Common Side Effects

Not everyone experiences the same side effects, but this information is here to help if you experience any of these more common problems. You can keep notes about how you feel and work closely with your doctors and nurses to find the best ways to feel better.

THINGS TO REMEMBER

4 Your symptoms are linked to the location Many cognitive symptoms (memory loss, †† †† of the tumor in your brain, and result from anger, anxiety or depression) not your treatments. only affect you, but also people close to you.

†† There are ways to relieve symptoms and †† Try to be patient with yourself and with side effects, but this process is not perfect others as you strive for a higher quality and it requires time and patience. of life.

†† Rehabilitation specialists (physical, speech †† Licensed social workers and support and occupational therapists) can be terrific groups can help as you cope with help. Try to find a team that is experienced depression, anxiety, or other changes in working with brain tumor patients. in your life. (See Chapter 5 for more.)

†† Keep track of how you feel (or ask someone †† Complementary or alternative medical to keep notes for you.) Aim to bring techniques, such as diet changes, exercise, your notes to appointments to help you or relaxation techniques, may also help you remember what you’d like to discuss. feel better.

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 31 LOCATION MATTERS

As a brain tumor grows, it presses on the LOCATION OF THE TUMOR SYMPTOMS surrounding brain tissue, which affects the function controlled by that part of the Frontal lobe • Changes in personality • brain. This chart shows symptoms that Loss of inhibitions, behaving aggressively • Losing interest in life (apathy) can be caused by tumors in different parts • Difficulty with planning and organizing of the brain and the spinal cord. • Being irritable • Weakness in part of the face, or on one side of the body • Difficulty walking • Loss of sense of smell • Problems with vision or speech

Temporal lobe • Forgetting words • Short term memory loss • Seizures associated with strange feelings, smells

Parietal lobe • Difficulty speaking or understanding what is said to you • Problems with reading or writing • Loss of feeling in part of the body

Occipital lobe • Sight problems or loss of vision on one side

Hindbrain (cerebellum) • Poor coordination • Uncontrolled movement of the eyes • Nausea and vomiting • Neck stiffness • Dizziness

32 FRANKLY SPEAKING ABOUT BRAIN TUMORS LOCATION OF THE TUMOR SYMPTOMS QUESTIONS TO ASK ABOUT SIDE EFFECTS Brain stem • Poor coordination • Drooping eyelid or mouth on one side 1. What side effects should I expect? • Difficulty swallowing 2. When should I call you for immediate • Difficulty speaking help? (With which side effects?) • Seeing double 3. What can I do to manage my side Spinal cord • Pain effects? Can you help me create a • Numbness in part of the body management plan? • Weakness in the legs or arms 4. How do you recommend I keep track • Loss of control of the bladder or bowel of how I feel, and what do you need • Difficulty walking to know? Pituitary gland • Irregular or infrequent periods 5. What can I do to feel better? • Infertility in men and women, impotence • Lack of energy • Weight gain • Mood swings • High blood pressure • Diabetes • Enlarged hands and feet

Nerves controlling • Blurry vision sight or hearing • Hearing loss

Meninges • Headache • Nausea and vomiting • Sight problems • Neck pain

Adapted from Cancer Research UK. www.cancerresearchuk.org

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 33 LEARN WHAT TO EXPECT AFTER YOUR TREATMENT

After any surgery or cancer treatment, it is not unusual to feel worse than you did before. Though this is temporary, it It was hard to see Archie’s heart break when he couldn’t can be depressing. Brain surgery is a lot express himself. It was hard for me to receive text messages for your body to cope with. Swelling in that made no sense. Practice is critical. Archie is a published the brain after an operation means it will take some time before you feel the benefit author, but he had to relearn so much. I just wanted him from having your tumor removed. to be patient with himself. So he would practice, and say

You may experience dizzy spells or get words over and over again until he got it right. confused about where you are and what’s — Sarah, caregiver happening. These episodes can come and go. This is normal and part of the recovery period.

For some people, recovery may be complete after a few weeks or months; for others, you may have to learn to adjust and manage permanent changes in your life including not being able to work or accomplish all of the tasks you did before. Your surgeon can give you some idea, but ask as many questions as you can about what to expect for your recovery.

34 FRANKLY SPEAKING ABOUT BRAIN TUMORS REHABILITATING PHYSICAL SYMPTOMS

People who experience a variety of • Occupational therapists teach It is also useful to know about the federal physical symptoms including weakness, patients how to manage their side and state programs that link people with difficulty speaking, stiffness, problems effects so that they can go about their services, technology, and funding. For with movement, etc. can benefit from lives and perform daily activities, such example, the Americans with Disabilities various forms of rehabilitative treatment. as cooking, writing, and driving. Act helps people who experience a

Every person with a brain tumor deserves • Speech therapists help people disability due to illness, like a brain tumor, to function as optimally as possible, overcome problems understanding but want to go back to work with reasonable so patients should be evaluated for and producing language. Speech accommodations. (Chapter 6 offers more successful rehabilitation treatment. therapists also help with eating and information, or visit www.govbenefits.gov, or www.abledata.com.) Physical, occupational, and speech thera­ swallowing caused when there are oral pists are experts in this area – and ideally, motor problems. They teach patients you can work with professionals who are how to improve their speech process experienced in working with brain tumor and adjust how they verbalize or QUESTIONS ABOUT REHABILITATION SERVICES patients and/or neurological dis­orders otherwise express themselves. (rather than sports injuries, for example): If you need them, there are assistive 1. How long do you estimate that I will • need rehabilitation services? Physical therapists help patients devices and exercises that can be improve their walking, balance and prescribed by rehabilitation specialists. 2. Do I have insurance benefits for rehabilitation? If so, what will it strength. Some people experience Handrails and grab bars, and bath or cover? permanent mobility problems. shower chairs are some. There are also Physical or occupational therapists 3. If I haven’t met my rehabilitation tools and tips to help with eating and goals before my insurance benefit will offer exercises to support your dressing, and to help a person maintain runs out, how will that be handled? range of motion and make sure your computer access and independence. body has proper positioning to help Keeping track of issues and talking decrease pain and freezing of the regularly with rehabilitation specialists limb(s) as much as possible. can help you get the support you need.

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 35 HEADACHES SEIZURES

Headaches are most often caused by A seizure is a sudden attack or convulsion • Simple Partial Seizures can cause edema (swelling of the brain caused caused by an abnormal burst of electrical involuntary jerking, tingling or by the tumor or treatment). Steroids activity in the brain. It can cause a range numbness in one part of the body, may be prescribed to reduce edema. of reactions, from muscle contractions, to buzzing in the ears, lip smacking, Unfortunately, steroids can cause their staring, to loss of consciousness. and dilated pupils. own set of problems (difficulty sleeping, Some people only experience one seizure • Complex Partial Seizures cause sweating, over-eating, agitation). If you while others suffer from reoccurring altered consciousness. A patient may take steroids, be clear with your medical seizures, or epilepsy. Seizures are common be aware of his or her surroundings team and tell them if you experience with slow-growing gliomas, meningiomas, but unable to speak, or may feel sleeplessness or other new symptoms and metastatic brain tumors. confused and hallucinate (imagining so they can adjust the dose. sights, odors, and sounds).

Some headaches are connected with • Generalized Seizures are also symptoms such as dizziness, nausea, or called grand mal seizures. They vomiting, often because of where the begin with a sudden loss of physical tumor is located in the brain. The surgical control with flailing arms and legs, removal of the tumor will often relieve unconsciousness, twitching muscles, those headaches; and post-operative and incontinence, or shallow headaches often go away after a short breathing. Afterward, the patient may period of time. be limp or confused.

If headaches persist, you should be evaluated. If headaches return, it could be a sign of recurrent edema or a new tumor and should be addressed by your treatment team.

36 FRANKLY SPEAKING ABOUT BRAIN TUMORS Patients who suffer from multiple Some AEDs react badly with certain HELPING SOMEONE WHEN seizures can keep a journal of when and chemotherapy drugs and should not THEY HAVE A SEIZURE for how long the seizures occur. The be used together. If side effects are a doctor can then find a pattern and adjust serious problem, a doctor can change If someone is experiencing a seizure, antiepileptic drugs to help. the medication. stay with them and allow the seizure to pass. This can take a few seconds to a A patient may be put on an antiepileptic If you are aware of AED medications, few minutes. Loosen any tight clothing or antiseizure drug if he or she or other medications that you should if possible, and make sure they are breathing. Try to remove or cushion experiences a seizure or to prevent not take or react badly to, it is helpful harmful objects to prevent injury, and seizures. The type and amount of to consider wearing a medical alert do not put anything in their mouth. medication is based on the level of bracelet with this information. Call for emergency help if the seizure seizure control needed and how well you lasts longer than five minutes, if a react to the medication. second seizure immediately follows, or if the person has trouble breathing or is injured.

Patients who suffer from multiple seizures can keep a journal of when and for how long the seizures occur. The doctor can then find a pattern and adjust antiepileptic drugs to help.

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 37 GASTROINTESTINAL (GI) BLOOD COUNTS PROBLEMS

Anemia is when red blood cell (RBCs) bleeding. If thrombocytopenia becomes GI problems can include any difficulty levels are unusually low. RBCs are too severe, platelet transfusions may be with digestion or stomach discomfort. important because they contain necessary. Chemo­therapy is well known for causing hemoglobin which allows the oxygen GI problems. Thrombosis is the formation of blood exchange to occur as blood circulates clots as a result of increased clotting through our bodies. Low RBC levels lead factors in the blood. With deep vein to fatigue or symptoms like dizziness, or TIPS TO RELIEVE thrombosis, blood clots form in the legs CONSTIPATION shortness of breath. If anemia becomes and disrupt the flow of blood, causing severe, it can be treated with medications • Eat more fiber-rich foods (whole pain or swelling in the calf, behind the or with a blood transfusion. grains, fruits and vegetables) knee, or in the thigh. If blood clots break • Increase physical activity Leukopenia is when white blood cells loose and block blood vessels in the • Consider laxatives (WBCs) are unusually low. WBCs are lung, it is called pulmonary embolus important because they help to fight (PE), which requires immediate medical • Drink more water infection. Chemotherapy can affect your attention. DVT and PE may occur at any ability to maintain adequate amounts of time after brain tumor surgery, especially WBCs. Steroids can also lower certain when a patient is not physically active. WBCs, called lymphocytes. Your doctor may Patients and caregivers need to be aware prescribe antibiotics to help protect you. of DVT symptoms and call the doctor immediately if they have concerns. Thrombocytopenia is when the level of thrombocytes or platelets is unusually Staying active and walking as much as low. Platelets are important for our blood possible is the best way to prevent DVT. to clot. Chemotherapy can decrease the Compression stockings and medication production of these cells, and when they to thin the blood are also used for fall too low we are at risk for spontaneous prevention.

38 FRANKLY SPEAKING ABOUT BRAIN TUMORS FATIGUE

Feeling exhausted or extremely tired is TIPS TO RELIEVE TIPS TO MANAGE NAUSEA AND VOMITING the most common side effect reported by FATIGUE patients. • Antinausea medications called • Try to establish a daily routine Fatigue is not relieved by a good night’s antiemetics may help • Listen to your body. Rest when you • Diet changes are useful. For sleep; it can last for a short time or for need to many years. It is caused by many things, example, when you don’t feel like • Mild exercise will help give you eating, try frequent healthy snacks from tumor treatments to the tumor itself, more energy rather than large meals to the healing process, to poor sleep, • Make lists of things you need to do • Bland foods, crackers, and clear stress, or anemia. Fatigue is considered to and recruit help liquids between meals may be better be one of the most debilitating symptoms • tolerated Make plans to get things done and side effects of a brain tumor because during the time of day when you • Avoid foods with strong odors, it limits a person’s ability to function. have the most energy heavy spice, alcohol, and greasy or • fried foods If one reason for your fatigue is No matter what the cause, fatigue can be anemia (a low level of red-blood • Suck on a lemon drop candy to managed. The goal is to conserve energy cells), seek medication to increase relieve nausea so you can focus on doing the things that the level of your red blood cells are important to you. • Ask if drugs, like Provigil, may help reduce fatigue

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 39 COGNITIVE AND BEHAVIORAL CHANGES

A brain tumor and its treatment(s) can More tools to cope with cognitive and • Anger management training, cause changes in a person’s behavior and behavioral changes include: counseling or medication can ability to think. Patients may experience help a patient who experiences Cognitive Rehabilitation difficulties with their communication, behavioral and personality changes Cognitive rehabilitation is designed concentration, memory, and their such as impulsiveness, frustration, or to help people regain as much of their personality may change. moodiness. mental, physical and emotional abilities These difficulties may affect a patient’s as possible. Caregivers and/or family members also ability to work or go about his/her daily • Compensation techniques are benefit from compensation techniques. life, and they do not always go away. This methods to develop alternate skills Often, a caregiver feels frustrated (“Why can cause stress for both the patient and to make up for those that have been can’t [the patient] do a simple task?”) his or her family. lost, such as exercises to strengthen and angry (“He/She’s driving me nuts!”). Medication may be prescribed to sight, speech, and movement. When Mixed emotions towards a loved one reduce problems with cognitive and full recovery is not possible, treatment are common. These feelings make home behavioral changes, and counseling may includes compensation techniques like life very complicated – especially as help a patient recognize when they are learning to live with memory loss by people with brain tumors live longer in a experiencing cognitive problems. keeping calendars, reminder systems, cognitively impaired state. It is important and organizers. Neuropsychologists that a caregiver has help or compensation are cognitive experts that can help strategies that he/she can use to maintain identify compensation solutions or the high level of patience that is required. offer medications to enhance mental (See Chapter 7) functioning (for example, Ritalin).

40 FRANKLY SPEAKING ABOUT BRAIN TUMORS At first I didn’t EXERCISE YOUR BRAIN realize how much

PLAY TO YOUR STRENGTHS. PRACTICE RELAXATION. self-esteem I’d lost. Use memory tools to help you Remember that stress plays a large I’m in cognitive remember. Sticky notes, lists, and role in memory. Relax using yoga, always putting your keys in the meditation, exercise, and other therapy now same place help take the techniques. and it’s like psychotherapy. burden off your memory systems. Tools (notebooks, EXERCISE YOUR BODY. Three weeks in and I feel better calendars) can also help Even light exercise mentally at work, and I’ve you remember. greatly improves mental noticed a difference in myself. performance by bringing CHALLENGE YOUR- oxygen and nutrients to — Darren, patient SELF IF YOU CAN. your brain. Puzzles, games, playing an instrument, and reading all help to EAT RIGHT. improve your memory and thinking Focus on eating fruits and vegetables. abilities. Be patient with yourself. Keeping your blood sugar normal improves mental performance. Adding GET ENOUGH SLEEP. essential fatty acids (Omega 3s from Your body needs 7-9 hours of sleep fish and flax seed), B-Vitamins, and per day. When you’re recovering Amino acids will also help. from brain surgery, you will want even more sleep. Take cat-naps ADJUST MEDICATIONS. during the day if you’re having If you think that your memory problems trouble with sleep during the night. may be worsened by something you’re taking, ask your doctor.

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 41 ANXIETY AND DEPRESSION

Anxiety is a normal response to new Treatments include antidepressant TIPS TO COPE WITH and stressful situations. Feeling anxious EMOTIONAL DISTRESS medication and counseling. Just talking from the diagnosis or from medications about how you feel with someone skilled that increase agitation may make • Talk with friends, family, or spiritual in relieving emotional problems can help every situation feel even more intense. advisors about your feelings and fears make you feel better. Common symptoms of anxiety include: • Make an appointment with a counselor, therapist, or psychiatrist Most people note that their mood improves rapid heartbeat, fear, restlessness, for help as the symptoms of a brain tumor or side nervousness, and sweaty palms. • Join a support group or call a cancer effects from treatment are managed and If you are feeling anxious it is important outreach program go away. to talk about your feelings and concerns, • Ask your doctor about medications and to find ways to regain a sense of that can help control in your life. • Try to solve only one problem at WAYS TO FIND A a time TRAINED COUNSELOR Often, depression and anxiety go • Use relaxation techniques to reduce • Ask your doctor for an oncology together. Depression is common in your body’s sensation of stress social worker referral (a counselor or anxiety people with brain tumors. People who who specializes in cancer) • Focus on living in the moment feel depressed experience a sense of • Request to talk with the irritability, hopelessness, an inability to psychiatric liaison nurse in your concentrate, apathy, withdrawal, and treatment center mood swings – sometimes a desire to • Contact the Cancer Support harm themselves. While many of these Community or other cancer symptoms can be attributed to a tumor, support organizations poised to help (see resources section) depression can and should be treated • Contact your insurance company’s on its own. mental health service for a referral

42 FRANKLY SPEAKING ABOUT BRAIN TUMORS HORMONAL CHANGES, FERTILITY AND SEXUALITY

Hormonal Changes Fertility TIPS TO RESTORE Changes in hormones and endocrine INTIMACY Many of the treatments used for brain function may result from a tumor found tumors can impact a person’s fertility in or near the hypothalamus, pituitary or • Communication is essential. To either temporarily or permanently. feel connected with your partner, pineal glands, or as a delayed effect of Options are available for people who wish consider how he/she “hears” what radiation therapy. If left untreated, you want to say to get pregnant after treatment, but you hormone disruptions can become a • Find ways to feel more attractive to must speak up before treatment begins to disturbing, chronic problem that causes yourself, and in turn, to your partner consider sperm or egg banking, or tissue mood and personality changes, as well • Be open to discovering new ways freezing. Insurance coverage is not as sexual dysfunction. These conditions that you and your partner can consistent for these things, so ask your require specialized treatment and connect and feel close insurance company what’s covered monitoring by an endocrinologist. • Remember to make small, intimate before you begin. gestures, like a smile, a touch, or a hug • Look online for the American Cancer Sexuality Society’s booklet on sexuality and intimacy after cancer (www.cancer.org) Changes in sexuality from treatment or a tumor can result from a decreased libido, fatigue, changes in self-image (from the surgery and treatment). Many people don’t feel comfortable talking about this problem with their doctor, although it might be important to do so. Consider that your doctor or nurse may have helpful suggestions and advice.

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 43 Complementary or Alternative Medicine (CAM)

The medical community is increasingly DIET AND NUTRITION EXERCISE recommending complementary medical The purpose of a nutritious diet is to provide The goal of exercise is to enhance— techniques to relieve symptoms for brain energy and to improve immune functioning. rather than deplete—energy, strength, tumor patients. CAM is primarily used to Most often, people are asked to eat more and vitality. It helps you breathe properly relieve side effects and stress. plant-based foods (vegetables, fruits, and increases your lung capacity, which beans and whole grains) – while avoiding in turn benefits the immune system. It The most common CAM techniques are: or minimizing processed foods, refined also improves muscle strength and heart eating a plant-based diet, relaxation, sugars, meat and cheese. A plant-based health. Patients who must take steroids exercise, acupuncture, chiropractic, guided diet has been shown to improve our body’s for long periods of time minimize damage imagery or meditation, healing touch (such ability to fight disease, reduce blood to muscle strength with exercise. Several as Reiki), herbal medicine, and massage pressure, reduce cholesterol, and improve studies have shown that exercise can help therapy. If you choose to use a CAM overall health. Avoiding cured food (like people have better treatment outcomes, as approach, then it is important to inform deli meat or salted chips) and eating more well as secondary psychological benefits. your medical team. In some cases, CAM whole foods high in antioxidant vitamins practices could impact the way traditional Exercise can be simple, or more intense, may lessen the risk of developing additional cancer treatment is provided, so it’s a good depending on your ability. You can cancer – and over time – improve your idea to keep your medical team informed start with walking, light weightlifting, or body’s ability to fight the cancer you have. about your entire system of care. practices such as Tai Chi, yoga, or Pilates. There are some worthy diet recommendations It is helpful to start slowly with a goal to available, such as in Eat to Live by Joel build up your energy level and abilities. To learn more about CAM, Fuhrman, MD, or Eating Hints: Before, look for information on the During, and After Cancer Treatment by National Center for Complementary the National Cancer Institute. Under all and Alternative Medicine’s website: circumstances, it is best to eat whatever nccam.nih.gov. food you can tolerate. Talk to a dietician educated in working with cancer patients, and ask your neurologist if a diet you’d like to use is safe for you.

44 FRANKLY SPEAKING ABOUT BRAIN TUMORS HEALTHY EATING TIPS

GREAT FOODS TO EAT • raw and cooked colorful • raw and cooked starchy 30-60% vegetables: dark green, vegetables: squash, Vegetables deep yellow, orange, potatoes, corn 1/2 Raw, 1/2 Cooked red, or purple • fresh and dried fruits, • raw and cooked lightly avocado colored vegetables: • nuts, seeds and oats cauliflower, mushrooms, • tofu and beans onions, cucumber, 10-40% lettuce Fruits STAY HYDRATED • water • decaffeinated tea 10-40% • fruit juice • fruit smoothies Beans/Legumes • coconut, almond, or rice milk 10-20% Seeds, Nuts, Whole Grains FOODS TO LIMIT 5-10% Fish, Eggs, Poultry, Dairy • cured meats • processed foods with • red meat food coloring and Beef, Sweets, Cheese, saturated fats 1-5% Processed Foods • alcohol • • sugary sweets fried foods • cheese

CHAPTER 4 / MANAGING COMMON SIDE EFFECTS 45 Our dietician was so helpful. She gave Darren tips to feel more energy, tips to get more liquid into his diet when he was dehydrated, tips to address lots of side effects. And it works. …It’s funny, we thought we ate healthy before, but the dietician showed us how we really ate! Now we do better.

— Carrmen and Darren, caregiver and patient I hate that phrase, CHAPTER FIVE / QUALITY OF LIFE “live like you’re dying” – I say: Live like you’re alive, and re-think what your definition of alive is.

— Tony, patient

Quality of Life CHAPTER FIVE / QUALITY OF LIFE CHAPTER 5/QUALITYOFLIFE

Spirituality Relationships The value ofsupport yourCoping with diagnosis Making plans forthefuture ...... 47 54 5 51 4 48 9 3 Quality of Life

Generally, people who are well informed about their illness, treatment, and resources for support are more able to make decisions that take into account their quality of life and overall wellbeing.

THINGS TO REMEMBER

5 You and your loved ones can learn to adjust Think about how to get help for your †† †† to a new perspective on life. immediate caregivers, to avoid them from “burning-out.” †† When problems arise, consider active coping strategies (see p. 48), to identify †† Find a sense of peace and meaning in solutions that you can live with. your life by tapping into your spirituality and/or other things that bring you comfort. †† Value support from others with experience. Make plans for the future, with realistic Take the time you need to experience †† †† intentions and without regret. your grief.

CHAPTER 5 / QUALITY OF LIFE 47 COPING WITH YOUR DIAGNOSIS

When you feel overwhelmed about Coping with the Fear of Recurrence ACTIVE COPING your diagnosis (or any problem for that The risk of recurrence is one issue that matter), it’s useful to think about how you people diagnosed with a brain tumor • react in difficult situations. Many people Define the problem: break it into genuinely fear. The goal of treatment is, smaller parts find that an “active” coping style reduces most often, to prevent recurrence for • Decide which elements of the stress and improves their focus when they as long as possible, but for how long is problem you can control, and which try to solve serious problems. you can’t unknown. When you are making treatment • Look for advice and information to One of the best safeguards for your address the problem decisions and learning how to manage quality of life is to be familiar with and • your diagnosis, consider your quality of Make a plan and take action to deal follow the post-treatment monitoring with the problem life. You have to define what “quality” plan set by your medical team. The • If the problem cannot be solved, try means to you, then take reasonable steps earlier a problem is detected, the more to adopt a new perspective to make to bring you closer to your quality of life it an issue you can live with options you may have for re-treatment. goals. If additional treatment is suggested, • Acknowledge your feelings consider the possible risks and benefits It helps to recognize that you don’t have • Find a support group or counselor of treatment, and it’s often helpful to get to sort everything out at once. It may take • Build relaxation into your schedule a second or even third opinion before some time to deal with each issue that (Yoga, exercise, music, reading) deciding what to do. you face, so ask for help if you need it. It is likely that your doctor or nurse will One of the hardest realities for most know who you can contact for additional of us is the unknown. When you allow support. thoughts of tumor recurrence to disturb your ability to enjoy life, or to depress you, then it’s time to get help.

48 FRANKLY SPEAKING ABOUT BRAIN TUMORS THE VALUE OF SUPPORT

By developing a new perspective on life, How you feel can have implications Get the Support you Need no matter how awkward or foreign it may on your quality of life and the way you There are many ways to get the support initially feel, it has helped many people experience your diagnosis. It’s important you need. Part of the challenge is come to terms with the unknowns in to stay in touch with your feelings and accepting that you’d like support, and their lives. They may find peace and new seek support when you need it. that it’s okay. If you already have people meaning. They realize they may need to you can talk with and lean on, use shift priorities and focus on ways to enjoy them. If you’d like to find people who EXPRESSING YOUR life, and each moment in it, differently. EMOTIONS CAN understand, seek them out. Knowing that you have people to talk with about It sounds cliché, but if you can focus on • Decrease anger or feelings difficult emotions is essential when keeping a healthy lifestyle and spending of hostility coping with a brain tumor. more time doing things that make you • Improve self-confidence and and others in your life feel happy, it assertiveness makes a difference, and can push the Support Groups • Improve feelings of empathy, fear of recurrence away. It’s valuable to interest, and humor No one understands the experience focus on what you can control, such as • Improve energy (reduce fatigue) of someone affected by a brain tumor your highest quality of life, rather than to • Improve overall quality of life more completely than somebody else in focus on what you can’t control, such as the same situation. That is the basis of cancer recurrence. support groups.

Support groups serve several functions. They give patients and families opportunities to talk with knowledgeable people, including health care professionals, who can educate them and provide information about their disease.

CHAPTER 5 / QUALITY OF LIFE 49 They offer emotional support and practical insight to help cope with the GREAT RESOURCES FOR SUPPORT GROUPS crisis of a brain tumor diagnosis. And For more information on support groups, talk with the social worker or nurse they can smooth the transitions that at your treatment center or ask: patients and families must make as they • National Brain Tumor Society • Cancer Support Community deal with unfamiliar environments, such www.braintumor.org 1-888-793-9355 as hospitals and outpatient clinics. NBTS offers information about www.cancersupportcommunity.org one-on-one and online support CSC offers on-site or online support specifically for brain tumor groups for a variety of cancer types Professional Counseling patients with links to several other and caregivers. organizations that can help. Many people benefit from personalized • American Cancer Society help in dealing with emotional stressors. • T.H.E. Brain Trust www.cancer.org/treatment/ To find a counselor or psychiatrist with www.braintrust.org supportprogramsservices/index T.H.E. Brain Trust offers a large ACS offers a search tool to find experience in helping people with cancer, variety of online support groups cancer support groups located in or specifically brain cancer, again ask your for specific brain tumor types and near your zip code area. doctor or nurse. Often, the treatment caregivers. • American Brain Tumor Association center’s social worker or a spiritual leader • Imerman Angels One-On-One www.abta.org can offer guidance at no additional cost. Cancer Support ABTA offers a list of brain tumor 1-877-274-5529 support groups by state, with a zip www.imermanangels.org code search. Imerman Angels carefully matches • Musella Foundation a person touched by cancer with someone who has fought and www.virtualtrials.com/lists.cfm survived the same type of cancer. Musella Foundation offers online Personalized matches are also support groups for people affected provided for cancer caregivers. by brain tumors.

50 FRANKLY SPEAKING ABOUT BRAIN TUMORS RELATIONSHIPS

Talking about your Diagnosis Children sense and know more than QUESTIONS ABOUT Many people, understandably, find it adults often give them credit for. Children HEREDITY difficult to talk about their diagnosis with will overhear telephone conversations, others. First you’ll have to decide who you pick up their parents’ anxiety, blame Only 5-10% of brain cancers are hereditary. If you have questions about need to tell – and what you want to tell. themselves, and fear the worst if they your family history, we suggest the are given no information. When a parent You may decide that you have different following: groups of people that you’ll talk with has a brain tumor, the natural desire is • If you have multiple family members to protect the children through silence – about different things. It can help you feel diagnosed with brain tumors or better, and the people you talk with will but that usually backfires and makes have concerns about starting a also feel good as they find ways to help things worse. family after having a brain tumor and support you. yourself, consider a consultation with Young children up to the age of eight a genetic counselor. He or she can There are people who will be directly will not need a great deal of detailed access the latest genetic information affected by your experience (family information; older children and related to the specific tumor type in your family and advise you members, close friends, your boss). These adolescents will need to know more. In accordingly. people should know what you’re going a two-parent household, try to talk to • Share your family’s medical history each other first, to determine the best through so they understand the stressors with your kids and help them that you must face, and the schedule way to talk to your children. If single become good medical historians as changes that you’ll experience. parents are feeling a bit anxious about their own future health is monitored. the conversation, they may want to ask a relative or friend to be present.

Although no one wants to alarm children, there is nothing wrong with crying when a crisis happens. Crying is normal and healthy.

CHAPTER 5 / QUALITY OF LIFE 51 How your Diagnosis Impacts Others When friends and family want to help, Keep in mind that most people offering Different people will react differently to it can be useful to put together a list of help are eager to do something—and by your news; some will be eager to help, tasks that are easy to delegate. Be specific allowing them to be supportive, they will while others will withdraw and not know about what you need: a drive, help with feel appreciated. Similarly, it’s important what to do. shopping, help making phone calls. not to over-use supportive people; take note of when they need a break. It is not uncommon for a serious diagnosis to produce changes in personal relationships. This is because As a caregiver, it’s it is stressful, because brain tumors important to know that can change a person’s personality, and because they can leave people unable to your loved one may not function the way they used to. Relatives be aware of how their and close friends may find behavioral behavior impacts you. changes hard to deal with. You must be able to find On the other hand, many feel that their the support you need to marriage or relationship is strengthened take care of yourself. You through the process of dealing with a crisis together. They are grateful to have will need all the strength each other’s support. you can get.

— Candice, caregiver

52 FRANKLY SPEAKING ABOUT BRAIN TUMORS SPIRITUALITY

Humor The crisis of a brain tumor diagnosis It can be helpful to talk to your pastor, Is a brain tumor humorous? No, but often helps people gain insight into rabbi, imam, or a spiritual counselor in learning to laugh at life’s challenges has their beliefs and spirituality. Each of us your community. Members of religious been shown to help people cope better holds beliefs about life, its meaning, and and spiritual communities also may with difficult situations. Being able to its value, whether we participate in a provide practical help, such as assistance find humor in life can be calming when religious tradition or not. Prayer may be with transportation, meals, and visitation dealing with a brain tumor diagnosis. comforting and help you feel less alone. services.

Humor therapy is an actual science. It is Some people find comfort in their used to improve quality of life, provide spiritual beliefs while others question pain relief, encourage relaxation, and their faith, possibly feeling distressed reduce stress. The physical effects of by the idea that the illness might be a laughter include increased breathing, punishment for some past sin or lack of increased oxygen use, short-term changes faith. Having doubts and being angry are in hormones and certain neurotransmitters, normal responses. and increased heart rate.

Most often, finding the humor in life is something you and your friends can focus on anywhere, anytime.

CHAPTER 5 / QUALITY OF LIFE 53 MAKING PLANS FOR THE FUTURE

Hope is a powerful concept and coping GAIN A NEW It has been six years since my strategy that empowers people to look PERSPECTIVE… diagnosis and treatment. I have beyond the moment and into the future. Your sense of “hope” can change over • Remember to do things that make dedicated my life to helping time. It’s not about being positive all of you happy those going through cancer the time, but about trying to view things • Spend more positive time with or caring for someone going family, friends, and loved ones from a positive perspective as much • through cancer. There is so much as possible. Seek a more meaningful job • Volunteer to help others (like that a person like myself can do When you make plans for the future, keep becoming a brain tumor advocate) to help. hope in mind. Make reasonable plans • Focus on your health: quit smoking, — Greg (from the National Brain Tumor based on your well-being at the time. eat better, exercise more Society’s Story Corner) Patience is important. Simple plans can • Become more spiritual, whatever be appreciated just as much as larger that looks like for you goals for the future.

GET INVOLVED TO HELP OTHERS National Brain Tumor Society, www.braintumor.org Accelerate Brain Cancer Cure, www.abc2.org Imerman Angels, www.imermanangels.org

54 FRANKLY SPEAKING ABOUT BRAIN TUMORS CHAPTER SIX / PRACTICAL CONSIDERATIONS

There’s a lot we can do, so I’m ready to fight and keep fighting with Darren. We’re in this together.

— Carrmen, caregiver

Practical Considerations CHAPTER SIX / PRACTICAL CONSIDERATIONS CHAPTER 6/PRACTICALCONSIDERATIONS Your caregivers Death anddying Practical, legal, andestate planning privateConsidering homecare care andlong term Managing medical costs Employment laws andfinancial support Talking your with employer back to workGoing ...... 55 62 62 61 60 5 58 57 56 9 Practical Considerations

There’s so much more to consider than treatment and recovery. There’s work, finances, family, and the future. What’s really important to you and what isn’t? What do you need to do now and what can you do later?

THINGS TO REMEMBER

6 Going back to work is a practical and Making practical end-of-life plans helps †† †† personal decision. everyone, whether healthy or ill. If you don’t already have a will and advanced directives in Review your goals, perspective or abilities †† place, consider making these plans now. after a brain tumor diagnosis. You can gain control over the future and There are federal laws and supports that †† †† make plans that give everyone involved a can protect someone with cancer from sense of peace. losing their job due to new disabilities. Caregiving is a difficult job. People who Aim to manage medical costs in an †† †† need help should be aware of how their organized and informed way. caregiver is coping and aim to find balance with everyone’s changing role.

CHAPTER 6 / PRACTICAL CONSIDERATIONS 55 GOING BACK TO WORK

There is not one “right” answer about Sometimes an employer can arrange for It will take time to come to terms with working full-time, part-time, or not at all you to take on another role until you are career changes, and to determine what during or after treatment. This is a fully better, or you may ask to go back you would like to do next. If you think practical decision, based on your needs, to work part-time until you regain your you’ll need to choose a different type of abilities, and personal preferences. Some strength. work or need financial guidance, then it people make a complete recovery from may be useful to see a social worker or their brain tumor while others have counselor for help. lasting effects. It isn’t always possible to know how things will turn out.

Your health care team can suggest how THINGS TO CONSIDER ABOUT WORK your treatment and prognosis might affect your ability to work, so it can help • Do I enjoy my work and/or find it a • Does my state offer short-term disability to talk with them about your job and your welcome distraction? insurance? Or can I receive disability work-based priorities through treatment • Have my career priorities changed? insurance payments through my and recovery. Consider what’s best for employer or private insurance? • What does my health care team • you at each point in your experience. recommend? Will I qualify for long-term Social Security Disability Insurance (SSDI)? If so, do I • If you hold a job where your mental skills Can I complete my work functions have savings to carry me through the 5-6 are important, or where your strength is while in treatment? month waiting period? • needed for heavy machinery, you may not What should I expect about my • If I decide to stop work temporarily, how abilities and side effects after be able to continue at the same level. This will this affect me and others? treatment? can feel devastating. • If I decide to stop work, what will I need • How much sick leave do I have? to do to keep health insurance? • Am I eligible for the Family Medical Leave Act if I need to take time off?

56 FRANKLY SPEAKING ABOUT BRAIN TUMORS TALKING WITH YOUR EMPLOYER

How much you tell an employer about No matter what type of relationship you Make note of anything that could indicate your health is an individual decision. have with your boss, it’s good practice to discrimination. In the unlikely event that Some people find it helpful to tell keep records of your conversations you have problems with your employer their employers about their diagnosis, regarding your diagnosis. If you request in the future, careful records can prove while others wish to keep it private. Do accommodations for your work, ask for invaluable in your defense. Your state’s whatever feels right to you. this in writing. You may also want to fair employment agency can help you make a copy of any recent performance with additional questions. An advantage to letting your boss know reviews and any positive statements is that it may be less stressful when you about your work. need to rearrange your work schedule or miss a substantial amount of time at work. As long as you can do your work, there are laws to protect you from discrimination due to a brain tumor diagnosis. If you go back to work with a scar on your head, people are going to question not only how you’re doing, but also your work product. You have the burden of proving that you’re healthy and proving that you’re competent. I think that takes a toll on you… especially because things aren’t exactly the same.

— Archie, patient

CHAPTER 6 / PRACTICAL CONSIDERATIONS 57 Employment Laws and Financial Support

AMERICANS WITH The law does say that when leave is Disability application process can take more DISABILITIES ACT (ADA) needed for planned medical treatment, the than 100 days; and a year or longer if you The ADA is a federal law that protects employee must make a reasonable effort have to appeal. workers with a disability (including a brain to schedule treatment in a way that won’t tumor and/or effects of treatment) against disrupt the employer’s operation. SUPPLEMENTAL SECURITY discrimination as long as a worker can INSURANCE (SSI) If you have questions about these complete his/her job. The law requires and other benefits, such as Employer If you have a very low income and minimal that employers make reasonable Sponsored Insurance provided by savings and assets you may qualify for accommodations so people with your employer, you should discuss this benefits. These would begin immediately. disabilities can function. This might include specifically with your boss and/or your You would be able to receive monthly modifying a work schedule or making the human resources department. payments during the SSDI waiting period, physical workplace accessible with things if you qualify. like hand rails or tools for hearing loss. SOCIAL SECURITY DISABILITY You may also qualify for the Supplemental You can ask your medical team about INSURANCE (SSDI) Nutrition Assistance Program (SNAP, accommodations if you need them. SSDI is a federal program through the formerly Food Stamps) and Medicaid. Social Security Administration that provides Medicaid can be a welcome relief, if you FAMILY AND MEDICAL a monthly payment to people who have are struggling to pay for private medical LEAVE ACT (FMLA) worked for a sufficient period of time, paid insurance and qualify. The social worker or The FMLA entitles eligible employees to Social Security taxes, and are deemed financial counselor at your treatment facility take up to 12 workweeks of unpaid, job “disabled” by Social Security. In addition can provide more information. and benefit-protected leave in a 12-month to the monthly check (paid after a waiting period for specified family and medical period), after two years of receiving this reasons. FMLA covers time to care for a monthly benefit, SSDI recipients are also For more information about spouse, parent or minor child with a serious entitled to Medicare. co-pay assistance programs, health condition, or to take personal see p. 70. medical leave. This law only applies when Many people diagnosed with mid to an employer has 50 or more people late-stage brain cancer qualify for SSDI. To apply for SSDI or SSI: call employed within 75 miles, and when a If you are not working and you think you 1-800-772-1213; go online to worker has worked for at least 1,250 might want to apply, it is helpful to start www.socialsecurity.gov/disability. hours during the past year. sooner rather than later. The Social Security

58 FRANKLY SPEAKING ABOUT BRAIN TUMORS MANAGING MEDICAL COSTS

The very first question you may ask Try to anticipate and plan for the many PRACTICAL TIPS FOR yourself about managing the financial costs that can accompany a brain tumor COPING WITH THE aspects of your diagnosis is: “Am I able diagnosis. These costs can include COST OF CARE to coordinate the financial piece of my special medications and supplements • medical care right now?” If you answer not covered by insurance, child care, Get a notebook to record your expenses, conversations with the “ No,” perhaps you can ask a friend elder care, transportation, parking, insurance company, medical or family member to do this for you. food delivery – in some cases, even oral appointments, and other pertinent Insurance companies can sometimes chemotherapy. Though this can seem information (date, time and who assign a caseworker to help you navigate overwhelming (especially with concerns helped with what). insurance benefits and costs. Often, about your health), it’s helpful to feel like • Pick a certain day to be ‘health care people can use some help. you have a plan in place to manage the bill day.’ Use this allotted time to work on the task of keeping things costs of care. organized. This will prevent it from becoming overwhelming. • Get an accordion folder to help you file papers so you can find them easily, or ask for electronic billing information so you can create electronic files you can access. COPING WITH THE COST OF CARE • Identify one spot where you and someone you trust can easily access Frankly Speaking About Cancer: Coping with the Cost of bills, paperwork, and notes. Care is a free publication by the Cancer Support Community that can help guide you through the financial impact of medical care.

Order this booklet through www.cancersupportcommunity.org or by calling 1-888-793-9355

CHAPTER 6 / PRACTICAL CONSIDERATIONS 59 CONSIDERING PRIVATE HOME CARE AND LONG TERM CARE

Private duty or custodial care includes QUESTIONS FOR YOUR QUESTIONS ABOUT services such as having someone drive HEALTH CARE TEAM LONG-TERM CARE to your home to fix meals or drive you to medical appointments. When this type • What local organizations provide • Are private duty care and long- of help is needed, it’s good to know what low-cost or free private duty care or term care covered under my health other services? insurance policy? If not, can I costs are involved. Unlike home health • Should I plan financially for long-term purchase this additional coverage care with skilled nurses, private duty or medical care such as a nursing home now? companion care are usually not covered or hospice care? • Do you have a special rate for by health insurance. • Who can help me understand my state’s people paying out-of-pocket? Similarly, long-term care is not typically Medicaid rules (www.medicaid.gov) for long-term care and my eligibility? covered by health insurance. Long-term care involves extended care at a nursing home or other specialized facility for a longer period of time than rehabilitation care.

60 FRANKLY SPEAKING ABOUT BRAIN TUMORS PRACTICAL, LEGAL, AND ESTATE PLANNING

It’s helpful for all adults, regardless of Living Will Financial Power of Attorney their current health status, to prepare for The living will is a legal document that A trusted person is legally named Financial the future by having their affairs in order. states whether or not we would like to Power of Attorney to make financial Ensuring that legal documents exist, be placed on life support if our bodies decisions on our behalf when we are including a will, living will, and advanced cannot survive without such “heroic” incapable or otherwise desire assistance directives, will help maintain your sense intervention. This information should with money and finances. If you have to of control and provide you and your be given to doctors and family members manage multiple bank accounts, know family with guidance. when we are still actively making our that each bank or financial institution may own decisions. Most doctors have a require you to file separate forms of proof. It helps to talk with those closest to you standardized state form available. Once about questions like: “At what point is it completed, all people involved should time to stop active treatment?” and “How Will have a copy. does what I leave behind affect my family’s The Will is a legal document that defines future?” These are difficult discussions, what we want to do with our property, but it’s important to provide direction Health Care Proxy or money, and other possessions (including for those closest to you, and prevent Medical Power of Attorney children) after we die. Guardianship may problems later. This is a legal document that allows us to be a key element of a Will. If a person has appoint a trusted person to make medical no written Will, the laws of the state can There are several important documents decisions for us if we cannot make them determine how wealth and children are to consider for advanced care planning. for ourselves. In many states, the person passed along to family members. If you have questions, please speak with you appoint (your Medical Power of your doctor, nurse, or social worker. These documents can be created Attorney) is able to speak on your behalf independently (you can look online to if you are not able. It is important that this find sample forms for you and your family person knows your wishes and is willing to fill-out and keep on record), or to take responsibility. formally with a lawyer.

CHAPTER 6 / PRACTICAL CONSIDERATIONS 61 DEATH AND DYING YOUR CAREGIVERS

When you are diagnosed with a As a person receiving help, you may honestly with your caregiver, and get a potentially life-threatening illness, it’s resent the need after being able bodied, sense of when and how they could use a common to think about death. It’s normal or feel terrible guilt for being a burden break. Try to express your appreciation for people diagnosed with a serious brain on someone you love. Perhaps you don’t when you can. There are many things tumor to want to discuss the possibility of even realize that you are using a loved that can help your caregiver cope with death and to anticipate what they might one’s time. It’s valuable to look at how their new role — Chapter 7 offers some want or need in the weeks, months or caring for you is affecting your loved one, guidance. years ahead. from their eyes. Living with someone who has a serious disease is not easy. On the other hand, individuals might not want to discuss this, because it’s Most caregivers are happy to help and difficult or sad. These discussions can don’t want you to feel guilty about what be important and powerful parts of the they can provide. It’s important to talk coping process.

Talking openly about your feelings and desires can help you and your family When I was diagnosed, I wanted to maintain control over this time, to know “what did I do wrong?” and provide you the opportunity to accomplish certain goals or put closure I realize the answer is “Nothing”… to matters. It’s valuable to feel prepared but still, that’s infuriating! for whatever lies ahead. Remember that a — Tony, patient social worker or professional counselor is always someone who can help ease and enlighten these discussions.

62 FRANKLY SPEAKING ABOUT BRAIN TUMORS Don’t lose sight of CHAPTER SEVEN / CARE FOR THE CAREGIVER yourself. It’s easy to get wrapped-up in the process of appointments and waiting. Don’t get caught up. Take even 5 minutes to find out what you need for yourself. It’s not easy, but you have to take care of yourself too.

— Sarah, caregiver

Care for the Caregiver CHAPTER SEVEN / CARE FOR THE CAREGIVER CHAPTER 7/CAREFORTHECAREGIVER

Bereavement Finding andhelp support Making important decisions Care foryourself Moving forward ...... 63 68 67 66 65 64 Care for the Caregiver

A caregiver is anybody who provides unpaid help, or arranges for help, to a relative or friend because they have an illness or disability. Help can be physical, emotional, spiritual, financial, or logistical.

THINGS TO REMEMBER

7 You can be a tremendous resource to help Talk with the doctors about what to expect †† †† your loved one think through treatment and how to plan. Recovery after treatment options, goals and priorities during this can take a long time, it helps to feel difficult period. prepared.

†† Reach out to others who are also caring †† End-of-life care plans can be helpful. Make for someone with a brain tumor. These sure that all family members are on the individuals are often helpful. same page, and that the doctor is aware of your loved one’s preferences. †† Say YES! Remember that it’s vital to ask for and accept help. †† Enjoying life is about how you and your loved one focus on the things that really Be mindful of your own needs and feelings. †† matter. There are many ways to support your loved

one without neglecting your own physical, †† If you are grieving the loss of the economic, spiritual and emotional well-being. life you knew, give yourself time to grieve.

CHAPTER 7 / CARE FOR THE CAREGIVER 63 CARE FOR YOURSELF

People who are forced to adopt a new People who care for someone with a TIPS TO MANAGE role as “caregiver” have shared that as serious illness can forget to take care of DIFFICULT MOMENTS they gain information about the disease, themselves and can neglect their own options for treatment, expectations for needs. It becomes hard to focus on work, • Recognize feelings such as guilt, recovery, and resources for support, household responsibilities and other resentment and anger. Admit them if it will help you address the problem they begin to feel more confident about demands, yet those pressures continue. rather than ignore it or let anger grow. managing the task before them, and There are many ways to build-in time for • Be compassionate with yourself. their fear, anger, and frustration begin your own care, and this is essential for There’s no one way a caregiver to dissipate. your physical and mental wellbeing. Take should feel. Give yourself permission time for yourself – this is not selfish. to separate your feelings from your actions. When a Loved One’s Aim to find a balance between caring for • Reach out to your own support Personality Changes your loved one, caring for yourself, and network for some coping ideas. Depression, anger, confusion and caring for others in your life. The patient Call a family meeting and say, “Let’s mood swings are common symptoms will benefit most from being with you figure out how we can help each other.” for individuals with brain tumors. when your own life is in balance–and • These symptoms can be caused by the you will be less likely to feel exhausted Set limits. Take time on a regular basis to care for yourself. Your tumor, the treatment, or may have been or resentful about caregiving. batteries must be recharged so you present before. Regardless of the source, can be a better caregiver over the personality changes in someone you long haul. care for can be very challenging. These • Remember that you do not need changes can be subtle or drastic. Speak to have all the answers or fix all the with your doctor if you notice these problems. types of changes. The symptoms may be • Often, just “being there” and quietly treatable. listening is all that’s needed.

64 FRANKLY SPEAKING ABOUT BRAIN TUMORS Making Important Decisions

Many people with a brain tumor diagnosis experience changes in their ability to think 9. Remember that each stage of care clearly and process information. This may be due to the tumor, treatment or simply feeling requires different levels of support, overwhelmed by the diagnosis. Whatever the cause, a loved one is often responsible and everyone’s roles will change along for setting the course for a patient’s care as their advocate. If you must be the treatment the way. Brain tumors are not the same decision-maker, know that you can take some time to ask questions, research options, and as other major life events; they can be find support. ongoing and often unpredictable. Try to think through reasonable short- and Before you can know what’s needed and what you can do to help, you must understand long-term expectations. the situation. 10. Secure proper authorization that 1. Learn about the brain tumor 5. Create a “to do” list with your loved allows you to gather copies of medical including its location, grade, treatment one of immediate versus long-term and treatment records (including options, anticipated treatment side needs. Decide what your loved one operation reports and x-rays). By effects, and expectations for recovery. can address independently, what you obtaining legal “Power of Attorney” you will be granted this authorization. 2. Try to identify the top medical or someone else can address from a This will help with follow-up care plans centers and experts in your loved distance (via phone or internet) and and future medical needs. one’s (or your) area for a second what requires hands-on support. opinion or additional services, as 6. Recognize and respect the unique 11. Utilize an oncology social worker needed. capabilities of your loved one and their at the cancer center or affiliated with the oncologist. They offer a wealth 3. Research information on credible wishes and desires, in addition to the of information and can answer many websites, like through the National roles played by others involved. logistical and financial questions. Cancer Institute, and the National Brain 7. Set limits. Define what you can and Tumor Society. can’t reasonably do for your loved one. 12. Enjoy your relationship. Try to value the time you spend with your loved 4. Weigh the pros and cons of each 8. Organize a care-plan featuring one, because every moment is special. treatment option with your loved one, coordination and open communication including elements like time, where among all participants (who is doing treatment will be given and cost. what, when?). This plan will help reduce family stress and bring needed relief.

CHAPTER 7 / CARE FOR THE CAREGIVER 65 FINDING SUPPORT AND HELP

Above and beyond the specific advice • Cancer Support Community Evaluating your Needs that the doctor, nurse, and social www.cancersupportcommunity.org If your loved one is not receiving the worker can give you, there are several Provides education, free online support help you hoped for or need, it may be organizations and websites designed to groups, and discussion boards for people time to regroup. Are your expectations help family caregivers and volunteers affected by cancer and their caregivers. realistic? If you’re not sure, have an get help and get organized. Look through • My Lifeline honest conversation with the medical the resources at the end of the book, www.MyLifeline.org team. If your expectations are realistic and consider: Those with cancer can create their own but not being met, you may need to secure a different type of support. Try • National Brain Tumor Society personal webpage to communicate to brainstorm creative ways to address www.braintumor.org with family and friends. Pages include each issue by breaking problems into Offers information, connection, and online calendar tools, scheduling smaller parts and tapping into additional advocacy for people affected by brain timelines, and information about ways resources. tumors. NBTS has excellent resources friends and family can offer support. listed throughout their webpages. • Musella Foundation for Brain Tumor Respite Care and Palliative Care • American Brain Tumor Research & Information Respite care is short-term, temporary Association’s Connections www.virtualtrials.com relief to caregivers who are providing Online Support Community Offers education, support (emotional full-time support to an ill loved one. www.abta.inspire.com and financial), advocacy and guidance Respite offers intensive care for the ABTA connects patients, families, to brain tumor patients. Online patient in their home so a caregiver can friends, and caregivers for support support groups and opportunities to take a break. It often provides a positive and inspiration. participate in fundraisers for brain experience for everyone involved. You tumor research are also available. can contact a respite care organization when you need time away.

66 FRANKLY SPEAKING ABOUT BRAIN TUMORS MOVING FORWARD

Palliative care is a service used at any A diagnosis of advanced brain cancer can point in a patient’s experience to help a TO ACCESS RESPITE CARE make you wonder how long your loved SERVICES IN YOUR AREA caregiver with the management of pain one has to live. It’s frightening to envision FOR YOU OR ANOTHER and other symptoms. Palliative care has CAREGIVER, TRY: a different future than you originally the goal of achieving comfort, managing planned for yourself. It can also be • Arch National Respite symptoms, and improving a patient’s difficult to talk about such painful topics. Organization quality of life. Palliative care professionals archrespite.org/respitelocator Finding ways to talk about what is may come to a person’s home to deliver • Caregiver Action Network happening makes most people feel care and to teach caregivers how to 202-772-5050 relieved. The conversation often leads manage problems. Check with your caregiveraction.org to hopes about living the life you have insurance, and you can ask your hospital • Family Caregiver Alliance together now. Often, people want to or doctor for a referral. 1-800-445-8106 www.caregiver.org make the most of their time together with family, as they make peace with the circumstances. Perhaps these can be uplifting conversations that give you both a sense of peace.

One day Gary turned to me and said, “will you marry me?” and I said, “we’re already married.” And he said, “no, the first time I asked you was for who I thought you’d be, now it’s for who I know you are.”

— Candice, caregiver

CHAPTER 7 / CARE FOR THE CAREGIVER 67 BEREAVEMENT

If you try to discuss the subject but your Losing someone you love to cancer is My dad was loved one isn’t ready, know that we all one of the most difficult and profound diagnosed when I have our own timing. Finding someone experiences in life. was eleven and he else you can talk to about your concerns In the weeks and months after a death, when you’re ready is important. Research passed when I was people feel an enormous mixture of shows that caring for someone with a 14. When my dad emotions. It is important to know that brain tumor is just as stressful (but in a practically any emotion you experience is worked, he was on the road a different way) as having the diagnosis. normal. Sadness can also involve physical lot. So when he got sick, we joked As with other difficult emotional issues, symptoms, such as sleeplessness, muscle that we were really lucky to have tension, and decreased energy. you can contact a social worker or a stay-at-home dad for three counselor skilled in working with people Be assured that you will feel a sense of with a brain tumor, or talk to a spiritual years. We got to know him really calm eventually. You must give yourself leader that you trust. well those years – and if he died time to grieve. any other way, that would not Some people move quickly through grief; have been the case. others move slowly. No matter how you grieve, it is important to become aware of — Natalie, caregiver the normal aspects of grief, feel it, then be okay to move on.

68 FRANKLY SPEAKING ABOUT BRAIN TUMORS When my husband was diagnosed, I wanted to stay in touch with others but didn’t have a lot of time, so I made a group on Facebook. I posted every couple of CHAPTER EIGHT / RESOURCES days and I got so much in return. For example, I’d ask: could somebody help me with research? I’d get lots of answers. It’s an amazing tool. My community even set up this caravan of dinners. This gave me the love and support that I needed to stay strong.

— Candice, caregiver Resources CHAPTER EIGHT / RESOURCES CHAPTER 8/RESOURCES Cancer Community’s Support resources forsupport ...... 69 72 Resources

Brain Tumor American Society of The Healing Exchange Musella Foundation for Specific Support Clinical Oncology / Brain Trust Brain Tumor Research and Cancer.Net 877-252-8480 Information Accelerate Brain Cancer Cure 888-651-3038 www.braintrust.org 888-295-4740 202-419-3140 www.cancer.net T.H.E. Brain Trust runs online www.virtualtrials.com www.abc2.org Cancer.net is a resource for direct support groups and forums for Musella Foundation offers ABC2 aggressively invests in and accurate information about discussion on all brain tumors for education, support (emotional bold and innovative research cancer treatment based on the patients, providers, researchers, and financial), advocacy and and drives collaboration to expertise of clinical oncologists. educators and caregivers. guidance to brain tumor speed the development of patients. Videos, articles, 8new and effective treatments CancerCare Imerman Angels online support groups, and for brain cancer patients. 800-813-4673 312-274-5529 information about fundraisers www.cancercare.org www.imermanangels.org for brain tumor research are American Brain CancerCare provides free, Imerman Angels matches also available. Tumor Association professional counseling and anyone seeking cancer support 800-886-2282 support groups to individuals, with someone just like you – a National Brain Tumor Society www.abta.org families, caregivers, and the “Mentor Angel” who is the 800-770-8287 ABTA raises funds for brain bereaved. CancerCare’s Co- same age, gender, and has www.braintumor.org tumor research and education; Payment Assistance Foundation: beaten the same type of cancer. NBTS drives strategic research their website offers information, www.cancercarecopay.org. to find new treatments and education, and support. LIVESTRONG Foundation advocates for policies to meet the Cancer Support Community 855-220-7777 critical needs of this community. American Cancer Society 888-793-9355 www.livestrong.org/ 800-227-2345 www.cancersupportcommunity.org cancersupport www.cancer.org CSC provides support, The LIVESTRONG Foundation ACS offers information about education and hope to all provides information and brain tumors, treatments, and people affected by cancer tools to help people affected managing life with the disease; including personalized services by cancer. LIVESTRONG a search tool helps locate support at no cost. Navigation Services offers free groups; ACS offers the Health referrals to counseling and Insurance Assistance Service. other resources in your area.

CHAPTER 8 / RESOURCES 69 National Center for Financial and Legal Co-Pay Relief Program LawHelp.org Comprehensive and Assistance 866-512-3861 www.LawHelp.org Alternative Medicine www.copays.org LawHelp helps low and 888-644-6226 Brain Tumor Copayment The CPR program provides moderate income people find www.nccam.nih.gov Assistance Program, financial support to insured free legal aid programs in their NCCAM is the Federal Musella Foundation patients who qualify to communities, answers questions government’s lead agency 855-426-2672 access pharmaceutical co-pay about legal rights, and helps for scientific research on https://braintumorcopays.org assistance. The program offers with their legal problems. the practices known as This program provides up to call counselors who guide comprehensive and alternative $5,000 in financial assistance patients through the enrollment National Cancer Legal medicine (CAM). NCCAM offers per year to families who qualify process. Services Network information on the value and and use certain drugs to treat www.NCLSN.org legitimacy of CAM practices. brain tumors. Corporate Angel Network NCLSN is a coalition of legal 866-328-1313 service providers who offer National Cancer Institute Cancer and Careers www.corpangelnetwork.org some free legal services 800-422-6237 646-929-8032 Corporate Angel Network is programs to people affected www.cancer.gov www.cancerandcareers.org a non-profit organization that by cancer. NCI is the premier agency for CAC educates people with arranges free air transportation cancer research, training and cancer to thrive in their for cancer patients traveling to National Coalition for information in the US Federal workplace. Look online for free treatment using the empty seats Cancer Survivorship Government. Their website publications, career coaching, on corporate jets. 877-622-7937 has valuable information for and support groups for www.canceradvocacy.org all people affected by cancer – employees with cancer. Healthcare.gov NCCS offers free publications including search tools for The new Federal website on insurance and employment clinical trials. Cancer Legal Resource Center offering customized information issues for people coping with 866-843-2572 about the various health cancer. The Cancer Survival www.disabilityrightslegalcenter. insurance options for which Toolbox is an audio-program org/cancer-legal-resource-center you may be eligible, including that includes a section on The CLRC provides free and comprehensive information Finding Ways to Pay for Care. confidential information and about Medicare and Medicare resources on cancer-related Services through CMS legal issues for anyone coping (www.cms.gov). with cancer.

70 FRANKLY SPEAKING ABOUT BRAIN TUMORS NeedyMeds Patient Access Network Survivorship A-Z www.needymeds.org Foundation www.survivorshipatoz.org/ NeedyMeds is a free, online 866-316-7263 cancer clearinghouse to help people www.panfoundation.org Survivorship A-Z is a web-based who cannot afford medicine or PAN Foundation provides resource providing practical, health care costs. This website assistance to underinsured legal and financial information. includes information about patients. Patients or a member The site includes the ability to services such as Discount Drug of their medical team can apply make a computer-generated Cards, Medicaid websites, online or over the phone; a profile, personalized to your Federal Poverty Guidelines, and determination for assistance legal, financial, and social other useful information. is generally made within one situation. business day. Partnership for Prescription Assistance Patient Advocate Foundation 888-477-2669 800-532-5274 www.pparx.org www.patientadvocate.org The PPA is a coalition of PAF offers information about pharmaceutical companies, financial resources and doctors, other health care mediation services to assure providers, and community access to care, maintenance groups that help qualifying of employment, and financial patients get the medicines stability. Look for the they need. The website offers Underinsured, Uninsured, and access to more than 475 public Financial Resource Directories, and private patient assistance with information about programs, including more alternative coverage options than 180 programs offered by (www.patientadvocate.org/ pharmaceutical companies. resources).

CHAPTER 8 / RESOURCES 71 Cancer Support Community’s Resources for Support

Cancer Support Community’s resources and programs below are available at no charge.

CANCER SUPPORT HELPLINE® OPEN TO OPTIONS™ THE LIVING ROOM, ONLINE Whether you are newly Free one-on-one decision Cancer Support Community’s “The diagnosed with cancer, counseling is available with Living Room” offers much of the same a long-time cancer licensed mental health programming available at each CSC survivor, or are caring for someone with professionals who can help you process affiliate. On CSC’s website you will find cancer, CSC’s TOLL-FREE Cancer Support information about your situation, and online support groups, discussion boards Helpline (1-888-793-9355) is staffed by formulate a list of specific questions for the and social networking, “build your own licensed CSC Call Counselors available to oncologist. Appointments can be made website” services, and education materials. assist you Mon-Fri 9 am-8 pm ET. Our Call by calling 1-888-793-9355 and by visiting Counselors have been specially trained the CSC website to contact an affiliate to answer your questions and link you to providing the Open to Options service. valuable information. To access these services, visit CANCER EXPERIENCE REGISTRY www.cancersupportcommunity.org AFFILIATE NETWORK SERVICES

Almost 60 locations plus more than 100 SM These services are made available with The Cancer Experience Registry is a satellites around the country offer on-site generous contributions from CSC supporters. support groups, educational workshops, movement designed to help CSC better understand the social and emotional yoga, nutrition, and mind-body programs needs of people living with cancer so specifically designed for people affected that we and others can develop new by cancer. For a full list of affiliate locations, resources to support the millions of people visit the Cancer Support Community living with cancer every day. The Cancer website or call us at 1-888-793-9355. Experience Registry collects information about the experiences of people who have volunteered to share their cancer journey in a survey, and connects them to a network of resources. Join today at CancerExperienceRegistry.org.

72 FRANKLY SPEAKING ABOUT BRAIN TUMORS 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.

© 2013 Cancer Support Community. All rights reserved.

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