MAP a Game Plan for Advanced Prostate Cancer DVD I NS I DE ProstateAWARENESS Making Awareness a Priority for African-American Men Featuring Charlie Wilson Grammy® nominated musician and prostate cancer survivor table of Contents DISCLAIMER: This guidebook and DVD program is intended for informational purposes only. Anyone requiring medical or other health care should consult a medical or healthcare professional. Any actions or inactions based on the information provided are entirely the responsibility of the user and of any medical or other healthcare professionals who are involved in such actions and inactions. Janssen Biotech, Inc. (Janssen) and the Prostate Cancer Foundation (PCF) working with producers Conrad & Associates and Alan Weiss Productions, guidebook author Stephen Braun, and DVD scriptwriter Deborah Gobble, have used reasonable efforts to include timely and accurate information in this guidebook and DVD. Notwithstanding the foregoing, Janssen, the PCF, the producers, and the writers make no representations or warranties, expressed or implied, regarding the accuracy or completeness of the information provided herein and specifically disclaim any liability, expressed or implied, in connection therewith. Copyright 2013 Prostate Cancer Foundation All Rights Reserved No part of this book may be reproduced or transmitted in any form by any means, electronic or mechanical, including photocopying or recording or by an information storage and retrieval system, without written permission, except when permitted by law. Cover Photo (Charlie Wilson) Photography: Randee St. Nicholas Talking About It 2 What Is the Prostate? 4 What Is Prostate Cancer? 5 Tests for Prostate Cancer 6 Prostate Cancer: A Closer Look 7 Treating Advanced Prostate Cancer 9 Managing Pain 13 Maintaining Your Health 15 Finding Support 18 Sex and Intimacy 19 A Word to Caregivers 20 Taking Action 21 Resources 24 Talking About It Prostate cancer is one of those “below the belt” issues that many men don’t want to talk about. They’d rather not discuss problems they might be having “down there.” But it’s vital to think about—and talk about—prostate cancer, particularly for African-American men. This program will help you better understand advanced prostate cancer and your options for dealing with it. You’ll learn: African-American men have a higher risk of getting prostate cancer than white men. One in every 5 African-American men will learn he has prostate cancer in his lifetime. If you are reading this booklet, you may be one of those men. • How advanced prostate cancer may be treated • More about prostate cancer • Why African-American men are at higher risk for prostate cancer • Things you can do to boost your overall health So it’s time to talk. It’s time to learn. It’s time to take greater control of your own health and well-being. “We as African-American men don’t like to go to the doctor. I was one of them.” – Charlie Wilson, musician This booklet and DVD program are for African-American men with a specific kind of prostate cancer. This type is called advanced prostate cancer, also known as metastatic cancer. These terms mean that the cancer has spread beyond the prostate gland to other parts of the body. This is a serious medical condition, but also one that may be managed. 1 in every 5 AfricanAmerican men will learn he has prostate cancer in his lifetime. Today, there are many ways to treat advanced prostate cancer. New treatments have extended the survival time for men with advanced prostate cancer. 2 3 What Is the Prostate? What Is Prostate Cancer? Your prostate gland is about the size of a walnut, although it slowly grows larger as men get older. It lies just below your bladder, which is where urine is stored. The prostate surrounds the tube (called the urethra) that carries urine from the bladder out through the penis. Prostate cancer happens when some cells in the prostate grow in an out-of-control way. This growth usually starts slowly. Most often a man feels nothing in the early stages of prostate cancer. Needing to urinate frequently, or having difficulty urinating, may be symptoms of cancer, but are often caused by non-cancerous growth of the prostate. On the other hand, the following symptoms may be signs of cancer: The prostate’s job is to help produce semen, which is the milky liquid that is ejaculated during orgasm. • Blood in the urine • Blood in the semen • Difficulty having an erection • Pain in the lower back, hips, or upper thighs Your healthcare provider may suggest some tests that can reveal whether your symptoms are caused by cancer or not. Why Are African-American Men at Higher Risk? Scientists do not know for sure why African-American men are at higher risk for prostate cancer. Here are some possible reasons: testicle •African-American men are less likely to get optimal care for cancer than white men. • Genetic differences may put African-American men at higher risk for prostate cancer. •African-Americans are more likely to be diagnosed when their cancer is at a later stage of disease. 4 5 Tests for Prostate Cancer Prostate Cancer: A Closer Look One sign of prostate cancer is a high level of a substance called prostate-specific antigen, or PSA. Cancer cells may produce more PSA than normal. Your PSA level is measured in a small sample of blood. The normal range of PSA for African-American men varies, depending on your age. There are 4 stages of prostate cancer. In stages 1 and 2, the cancer is inside the prostate. In stage 3, a cancerous tumor extends beyond the prostate, but the cancer cells have not spread. Stage 4 prostate cancer means that prostate cancer cells have spread to other parts of the body. The cancer is said to have metastasized. If your PSA level is high, your healthcare provider may suggest a more direct test for prostate cancer, called a biopsy. In a biopsy, small samples of prostate tissue are tested for cancer cells. If cancer is found, the next question is whether the cancer has spread beyond the prostate gland into surrounding parts of the body. This can be done with other types of tests, including: When prostate cancer cells spread, they usually end up in the bones, or, less frequently, the lungs or liver. In these tissues, the cancer cells can continue to grow and form tumors. This can cause pain and can damage these tissues. Prostate cancer cells that have spread from the prostate to the lower spine • X-rays to see whether cancer has spread to the bones • Computed Tomography (CT) scan A type of scanner that takes detailed pictures of the areas around your prostate to look for signs that cancer has spread to nearby tissue. • Magnetic Resonance Imaging (MRI) MRI machines make pictures of your body using a very strong magnet linked to a computer. MRI pictures can sometimes reveal more detail than CT scans. 6 7 Treating Advanced Prostate Cancer Men with advanced prostate cancer have many choices of treatments these days. There is no “best” treatment. What is best for one man may not be best for another. Your healthcare provider will work with you to find a treatment—or combination of treatments—that is right for you. Surgery Surgical removal of the prostate is sometimes suggested for men with early-stage prostate cancer. But it is not usually recommended for men with advanced prostate cancer. That’s because the risks and possible side effects of the surgery outweigh the possible benefits. But sometimes a surgical procedure may be used to reduce symptoms associated with the cancer, such as having difficulty with urination. Hormone therapy Prostate cancer “feeds” on male hormones, such as testosterone. Cutting off the supply of testosterone, or blocking the action of testosterone, may slow or stop the growth of prostate cancer. One way to reduce testosterone is to surgically remove the testicles, although this is rarely used. The other way is to use medicines to block testosterone production or block the action of testosterone on cancer cells. Either approach can produce side effects such as: Your healthcare provider will work with you to find a treatment— or combination of treatments—that is right for you. 8 • Lack of energy • Hot flashes • Bone thinning • Swollen and tender breasts • Difficulty getting and maintaining an erection • Low desire for sex 9 Chemotherapy For most men, prostate cancer can be controlled for many years with hormone therapy. Some men respond less well to this type of treatment, though. When prostate cancer progresses in spite of testosterone-lowering efforts, it is called castration-resistant prostate cancer (CRPC). Your healthcare provider may suggest other forms of treatment for CRPC. Chemotherapy is the term used for drugs that kill cancer cells or halt cancer growth. Chemotherapy for advanced prostate cancer is usually given through a vein in your arm, rather than pills. The drugs are usually given in a clinic, hospital, or doctor’s office. Chemotherapy works by killing fast-growing cancer cells. This means the drugs can also harm or kill normal cells that divide rapidly, such as those found in the mouth, intestines, and scalp. This can lead to a wide range of side effects including tiredness, hair loss, nausea, vomiting, and diarrhea. Your healthcare provider may suggest medicines that can help reduce these side effects. Radiation Therapy Radiation therapy uses high-energy rays, called gamma rays, to shrink tumors or kill cancer cells. Radiation can be delivered with beams from outside the body or by implanting into the prostate tiny “seeds” that slowly release radiation. Sometimes radiation therapy is used along with hormonal therapy. Depending on the dose and type, radiation therapy can cause side effects including tiredness, diarrhea, frequent and uncomfortable urination, skin irritation, difficulty controlling urination, and difficulty getting an erection. Treatments for the Spread of Cancer to Bones Sometimes prostate cancer cells can move to the bones. This can weaken them or result in pain. Treatments exist that may help strengthen bones and relieve bone pain. Two types of medicines can directly help build bone strength. Other types of treatments, such as radiation or nuclear medicines, may help control the growth of cancer cells in the bones. “It’s important to have knowledge about this disease.” – Charlie Wilson, musician 10 11 Managing Pain New Treatments Many new types of medicines are being developed to treat advanced prostate cancer. Some of these medicines work by helping the body’s immune system attack cancer cells. New types of hormone therapies work to further reduce or block testosterone, which may help manage the disease. Clinical Trials Clinical trials are programs to see if new treatments are safe and effective. Some of these new treatments may be available to men with advanced prostate cancer. There is no guarantee that a new treatment will help. But it might, and joining a clinical trial can provide benefits such as more frequent checkups or more help managing side effects. If you are interested in a clinical trial, talk to your healthcare provider, or visit the government’s clinical trial Web site (www.clinicaltrials.gov) for more information. 12 When prostate cancer advances, it is more likely to cause pain—either from the cancer itself, or from a treatment. Some African-American men think they shouldn’t complain about pain, or that they should just “tough it out.” But nobody should suffer from pain. Relieving pain may help you carry on with your life. If you are experiencing pain, speak to your physician about the best options for you to help manage it. 13 Maintaining Your Health Controlling cancer-related pain usually requires some kind of prescription pain-relief medicine. These medicines come in many forms and strengths. For example, some are long-lasting, while others work right away. Your healthcare provider will work with you to choose the medicine, or medicines, that are best for you and your specific pain. Some men with advanced prostate cancer say it’s important for them to participate as fully as possible in their career, relationships and everyday life events. Others find a need to step back and reflect on their diagnosis and treatment before resuming daily activities. Regardless of your own approach, you may find that symptoms of the disease and medical treatments affect you physically. Some people with cancer-related pain need higher doses than others. Needing larger doses is not a sign of weakness and does not mean you are becoming an “addict.” Fears about addiction may lead people to suffer when they don’t need to. When used as prescribed by a doctor, pain medicines may improve your activity level and reduce your suffering. Remember: Take your pain medicine on time, every time! Pain medicines usually involve some side effects. Some of these, such as upset stomach or feeling sleepy, usually go away in a few days. Other side effects, such as constipation, do not go away. Constipation may be managed by adding fiber to your diet, drinking enough water, and using treatments suggested by a healthcare provider. This preventive treatment should be started when the pain medicine is started. Many kinds of non-medical treatments may also be used to help manage cancer pain. Such techniques can be used together with pain medicine, though they can also be used alone. Talk to your doctor about options that are right for you. 14 There are many things you can do to build energy and improve your health. A first step might be to arrange for care by a team of healthcare providers. 15 There are many things you can do to build energy and improve your health. A first step might be to arrange for care by a team of healthcare providers. This is called a multidisciplinary approach. You may get help from specialists in pain, diet, physical therapy, or mental health. Talk to your healthcare provider to see if this kind of approach would be helpful for you. Work with your healthcare team to understand how exercise may fit into your management plan. Exercise can be good for both your body and your mind! Even if you cannot walk, you may be able to do exercises in bed or in a chair. Speak with your healthcare team to tailor an exercise regimen that works well for you. Eat foods recommended by your healthcare provider. Cancer or cancer treatments can change your appetite or make eating difficult. You also may need to change your diet to maintain a healthy weight. Before you start treatment, go to the dentist. It’s important to have healthy teeth and gums! Pay attention to your moods. It’s normal to feel a range of emotions when faced with advanced prostate cancer. But severe emotions, such as anxiety and depression, can make life difficult and make it harder to stay healthy. Tell your healthcare provider about your moods. There are many ways to reduce anxiety, relieve depression, and treat other kinds of mood disorders. “Keep a happy spirit, and live one day at a time.” – Charlie Wilson, musician 16 17 Finding Support Sex and Intimacy It’s important to have someone you can share your concerns and feelings with. This person may be your romantic partner, a sibling, or a close friend. Ask them if they are OK with just listening while you talk sometimes, giving advice only when you ask for it, and understanding if sometimes you will be irritable and not in a mood to talk at all. Chances are they will appreciate your honesty and try to adapt to your needs as much as possible. Having advanced prostate cancer—or being treated for it—can affect your ability or desire to have sex. This may take some getting used to. As a man, your sexuality may be strongly tied to your sense of well-being. The thought of not having full sexual feeling or ability can lead to a sense of anger, loneliness, or even depression. For many people, talking about sex and intimacy, whether with a partner or a physician, can feel uncomfortable, but doing so is your best bet for finding solutions. It can also be very comforting and helpful to meet others who are coping with advanced cancer. Support groups can meet in person, by phone, or over the Internet. You may gain new insights, get new ideas for ways to cope, or feel better just knowing you’re not alone in your struggle. It may also help to seek spiritual support. A spiritual adviser from your place of worship may provide guidance and care for you and loved ones. Support groups can meet in person, by phone, or over the Internet. One key is good communication with your partner. It’s important for both partners to allow the other person to talk about how they feel and to brainstorm ways to enhance your sex life. Remember that even if it is more difficult to achieve or sustain sexual functioning, you are still a sexual being. Sexuality includes making your partner feel good in ways that are not limited to traditional intercourse. For many women, hugging and cuddling are as much a part of intimacy as sexual acts. Intimacy also includes giving your sexual partner permission to explore alternate ways to make you feel good. Try to be open to the advice or educational materials your healthcare provider offers. Some of it may work and some may not, but trial and error result in solutions that lead to increased sexual satisfaction. 18 19 A Word to Caregivers Taking Action Advanced prostate cancer and its treatments can involve strong feelings, shifts in life patterns, and sudden mood changes. These are normal, but they can make it challenging to support a man who is coping with cancer. Here are some suggestions for ways to help: By reading this booklet and watching the DVD, you’ve taken an important first step in understanding advanced prostate cancer. You’ve learned that you have options for treating advanced prostate cancer and managing your health and wellness. • Believe what he says about his experiences or pain. Having an advanced disease can be a time of personal growth. You may find a renewed desire to make the most of each day. No two people—and no two cancers—are exactly alike. But you can use the information in this booklet to begin charting your own course. By working with your healthcare team and your personal support network, you can give yourself the best chance of staying healthy and getting the most from whatever treatments you choose. • Watch for signs that he is depressed, such as changes in sleep or eating patterns, lack of energy, losing weight, or weight gain. (Note, however, that such changes can also be caused by cancer treatments themselves.) If you are concerned, talk to his healthcare provider. • Take care of yourself and your own needs. If you “burn out” or develop your own difficulties, you won’t be able to care for him the way you want to. • Offer to help with the paperwork involved with cancer care. • Offer to go with him on visits to healthcare providers. • Offer to keep track of medicines and prescription refills. • Accept offers by other people to help out. 20 21 Sponsors NOTES Janssen Biotech, Inc. Janssen Biotech, Inc. redefines the standard of care in immunology, oncology, urology and nephrology. Built upon a rich legacy of innovative firsts, Janssen Biotech has delivered on the promise of new treatments and ways to improve the health of individuals with serious disease. Beyond its innovative medicines, Janssen Biotech is at the forefront of developing education and public policy initiatives to ensure patients and their families, caregivers, advocates and health care professionals have access to the latest treatment information, support services and quality care. For more information on Janssen Biotech, Inc. or its products, visit www.janssenbiotech.com. Prostate Cancer Foundation Firmly committed to curing prostate cancer, the Prostate Cancer Foundation is the leading philanthropic organization funding and accelerating research globally. Since 1993, our unique strategies for identifying and investing in the most promising research programs have generated life-saving results. We channel resources to the world’s top scientific minds—cutting red tape and encouraging collaboration to speed breakthroughs. As a champion for increased government and private support, PCF has helped build a global research enterprise of nearly $10 billion. Through the generous contributions of our donors, we have funded more than 1,600 programs at nearly 200 research centers in 16 countries. Visit www.pcf.org for more information. 22 23 Resources American Cancer Society www.cancer.org 800-227-2345 Prostate Cancer Foundation www.pcf.org 800-757-CURE (2873) American Urological Association Foundation www.UrologyHealth.org 800-828-7866 Prostate Conditions Education Council www.prostateconditions.org 866-477-6788 Black Barbershop Health Outreach Program www.blackbarbershop.org 310-412-8009 Prostate Health Education Network www.prostatehealthed.org 781-487-2239 Centers for Disease Control and Prevention www.cdc.gov/cancer/prostate 800-232-4636 Male Care www.malecare.org 212-673-4920 National Alliance of State Prostate Cancer Coalitions www.naspcc.org 877-627-7228 National Cancer Institute www.cancer.gov 800-422-6237 The Prostate Net www.theprostatenet.org 888-477-6763 Us TOO International Prostate Cancer Education and Support Network www.ustoo.org 800-808-7866 Women Against Prostate Cancer www.womenagainstprostatecancer.org 202-245-9455 Zero: The Project to End Prostate Cancer www.zerocancer.org 888-245-9455 National Comprehensive Cancer Network www.nccn.com 215-690-0300 24 MAP a Game Plan for Advanced Prostate Cancer DVD I NS I DE ProstateAWARENESS Making Awareness a Priority for African-American Men Advanced prostate cancer is a serious medical condition, but also one that may be addressed in conjunction with one’s healthcare team. This booklet and DVD program may help African-American men and those who love them better understand what such a diagnosis means. New options for treating advanced prostate cancer are becoming available. No two men—and no two cancers— are exactly alike. But the information in this booklet can help you chart your own course in conjunction with your healthcare team. In this program you’ll learn: • More about prostate cancer • Why African-American men are at higher risk for prostate cancer • Options for managing advanced prostate cancer as part of one’s overall health plan Featuring Charlie Wilson Grammy® nominated musician and prostate cancer survivor K08Z13009R1