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Frankly Speaking About Cancer: Brain Tumors

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Frankly Speaking About Cancer: Brain Tumors 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 1 / THE EMPOWERMENT APPROACH ............................... 1 You are not alone ................................................................................................. 3 Gaining control .................................................................................................... 3 10 actions you can take ........................................................................................ 4 THE EMPOWERMENT APPROACH CHAPTER ONE / 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
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