Facing Forward A GUIDE FOR CANCER SURVIVORS NATIONAL CANCER INSTITUTE NIH Publication No. 93-2424 July 1990 Revised October 1992 Table of Contents An Introduction to Facing Forward Continuing To Care for Your Health Taking Care of Your Feelings Managing Insurance Issues Earning a Living Moving Ahead An Introduction to Facing Forward An Introduction to Facing Forward Who Should Read Facing Forward? If you are an adult who is getting on with your life after a diagnosis for cancer, this guide is for you. Whether your treatment took place in childhood, 5 years ago, or last week, you may share common concerns with other cancer survivors. The purpose of this guide is to present a concise overview of some of the most important survivor issues and practical ideas to help you look ahead. If you are just finishing cancer treatment, the information may prepare you for situations you have not yet experienced. As you read about handling possible problems, keep in mind that not everyone will have all these concerns. If you are a long-term cancer survivor, many of these issues will not be new to you. But some of the ideas and resources may add to your own experience. Facing Forward is also a book to share with your family or friends-the people who care about you. In some cases, they can use this book to understand issues you may face so that they can support you with a real understanding of your needs. In other cases they will use the ideas and resources in this guide in acting on your behalf-for example, in processing your bills and dealing with your insurance company and your medical care providers. Finally, it is important for your family to know about how your concerns may affect them, and the options they have for getting help. How to Use the Materials The key to using Facing Forward is to let it meet your needs. Each chapter can stand alone, so if you are interested only in one issue right now, that chapter is all you need to read. Or you may want to read it from cover to cover to get the big picture. Facing Forward is divided into four major chapters: * Continuing To Care for Your Health, * Taking Care of Your Feelings, * Managing Insurance Issues, and * Earning a Living. Each chapter follows the same format: What You Can Expect* relates the experiences of other cancer survivors. Briefs presents quick facts OF statistics about cancer issues. Tips offers practical suggestions for handling problems. Options offers alternative approaches for taking control of your situation. Resources lists materials and organizations that can give you more detailed information and help. * The situations presented in "What You Can Expect" represent a combination of documented experiences. Some of the accounts were suggested by cancer survivors who reviewed the materials. Each section can be used in four main ways: 1. To bring up some key issues that you may find interesting. 2. To suggest topics and questions you may want to discuss with professionals who can help: for example, your doctors and nurses, social workers, and clergy. 3. To serve as a long-term resource you can use over time as problems arise. 4. To help you organize your cancer information. For example, each chapter includes blank spaces and forms for you to: * Take notes and write down the answers to the questions you ask professionals. * Write in names and telephone numbers for your doctors, nurses, and social workers; local cancer support resources; and insurance inquiries. * Record helpful options you've found; you may want to pass the information to friends or coworkers who become cancer survivors. * Keep track of your checkup schedule. * Keep track of your medical history: the tests, treatments, and medications you have received and when you received them. How Facing Forward Was Developed The National Cancer Institute's Office of Cancer Communications and the National Coalition for Cancer Survivorship worked together on this project. Our first step was to ask cancer survivors which issues were most important to them and what kinds of information they needed to take charge of their lives. Next, we looked at the growing body of research (and personal histories) on the issues important to survivors. We pulled together some of the key facts and recommendations from the experts and put the information in a style we hoped would be easy to use. Finally, we tested the materials with cancer survivors to be sure it was clear, appropriate, and relevant to "real life" situations. We hope this booklet helps you find the options that work best for you, family members, and friends as you begin facing forward after cancer. Continuing to Care for Your Health What You Can Expect Briefs: Basics of Health Care for Cancer Survivors Tips for Managing Your Care Options for Coping with Body Changes Resources Forms: Vital Information About Your Care Notes from Visits to Your Doctors Continuing To Care for Your Health What You Can Expect After you have been treated for cancer, you will have two ongoing health needs. First, you'll want to take the health steps that doctors suggest for anyone of your age. Second, you'll have special needs for caring for your body based on your type of cancer, your type of treatment, and your current state of health. (See "Briefs.") Other long-term health needs for cancer survivors differ from person to person. In addition to regular checkups, you may need rehabilitation or home care. Some survivors may need help in dealing with emotional or sexual problems, while others may seek pain control therapy. And, sometimes more cancer treatment occurs. To get a good picture of your individual needs, ask your doctor. He or she can let you know what you need to do this year and in the future-to take care of your health. The following stories highlight some of the most common issues for cancer survivors. "I had expected that leaving the hospital after cancer treatment would be the happiest day of my life. When that time came, though, I was actually more afraid than happy. I felt very alone, and I missed the support of being watched over and cared for by the medical team. My social worker said that this was a common reaction, but I remember that my family had a hard time understanding it." -- Jack C. "In the first couple of years after my recovery, the thing I hated most was going in for my checkups. Just seeing the hospital again reminded me of a part of my life I'd rather have forgotten. I had an almost physical reaction to the sounds and smells of the place. But more than that, those visits reminded me that I'd been sick and that my cancer might recur. In my daily life, I'd kept those thoughts out of my mind. Fortunately, it's better now. Maybe I've just gotten used to the routine. But I also understand how important these checkups are to my health." -- Janet v. "l find I walk a fine line between watching the way I should for signs of recurrence or long-term effects of my radiation therapy and going overboard. I never used to be like this, but it's hard not to be scared by changes that might mean problems. My first doctor was not very sympathetic about my concerns, so I found another doctor who is. She understands, and she doesn't tell me 'it's all in your head." -- Louise F. "I'm in a support group for cancer survivors, and we have people with all kinds of cancers who've made all kinds of adjustments: living with artificial limbs, ostomies, breast changes, energy loss, chronic pain. But we all have one thing in common. At one time or another we each have been so angry that this happened to us. Before l joined the group, my anger was having as much of a negative effect on my life as my disability. Talking about it, and seeing how others cope, helped me put things in perspective." -- Sacha R. "When I think about my cancer treatment, I almost feel like it began when I left the hospital after surgery. Much of my care took place at home-for a while my room looked like a hospital. Now I'm back to the hospital sometimes for radiation therapy to control my pain. I'm getting used to the fact that my cancer is more like a chronic disease I need to manage lifelong than something the doctors can 'cure' once and for all." -- Irene L. "My family wonders if it's a waste of time and money for me to get yearly checkups for the colon cancer I had 15 years ago. But I feel I'm doing something important for my health." -- Rhea S. BRIEFS Basics of Health Care for Cancer Survivors * Get regular checkups. In general, people who have been treated for cancer return regularly to the doctor every 3-4 months at first, and once or twice a year later on. Ask your doctor how often you should be rechecked. * Be alert to signs of a possible return of cancer and long-term effects of treatment. Ask your doctor for what symptoms you should watch. * Get tested as needed for other cancers. Your doctor can tell you how often you should have tests to detect breast cancer and colon cancer. With early detection, these cancers often can be controlled. * Have good health habits: Eating right and getting enough sleep and exercise will help you feel better. Tips for Managing Your Care * Keep accurate, up-to-date records of all the medical care you receive, for cancer and other conditions. (See pages 11 and 12.) Future decisions about your care may depend on how you have been treated in the past. If you move or go to several different doctors no one but you will have your complete history. * Do things you enjoy, even if you don't feel perfect. Pleasure can be a powerful tool for health. * Work as a partner with your doctors and other health professionals in your continuing care. When you first were treated for cancer, you may have taken an active part in making decisions about your care. The same active role can help you take control of your long-term health needs. The two main steps are: Ask questions of and give information to your caregivers. ASK QUESTIONS You need information to carry out your role in managing your care. These facts are as important to quality of care as any other aspect of treatment. With this in mind, no question you have about your care is "dumb." Many people bring a tape recorder, take notes, or ask a friend along to help them remember everything that's said. It is also a good idea to bring a list of questions when you visit your doctor. The following are some questions you may want to ask. * How often should I have a checkup? * What are the signs of cancer's return or of long-term treatment effects? * How likely are they to occur? * What changes might I see that are not danger signs? * What kind of diet should I have? * What are my treatment options for handling chronic pain, the return of cancer, the long-term effects of therapy? * What is the best way to talk to you about my concerns? (By phone? At a special appointment? At a regular visit scheduled in advance to run longer?) * Who else is available to talk with me about specific problems (e.g. sexual concerns, care instructions, general fitness)? GIVE INFORMATION Doctors need to know key facts about you to prescribe the best treatments and help keep you involved in your care. Tell them: * What medicines you now are taking for all conditions (including over-the-counter medicines such as aspirin or laxatives). Doctors need this information to avoid problems when they give you a new medicine. * About fears or concerns you have, especially those that might be keeping you from following treatment. Talking openly may help solve the problem. * About changes in your lifestyle. Even changes that seem minor could affect your treatment. For example, if you quit smoking you may need a different dose of some medicines. * How you are feeling. Include danger signs you may have noticed as well as any other changes that may be worrying you. * About problems you may have with what and how much the doctor tells you about your cancer. You have a right to hear as much or as little information as you wish. Options for Coping With Body Changes Get help if you need it. * Ask your nurse or the social worker at your hospital about homemaker services, home health services, seminars and classes, rides to the hospital, and other community aid. Find out how to use special tools to overcome disability or discomfort. * Mechanical aids can replace many lost functions. Talk to your rehabilitation professional. Learn from others who have the same problem. * Ask your local cancer support organization, social worker, or doctor's office staff to put you in touch with other survivors. They can give you practical tips to make your new situation easier. Find ways to meet your needs for intimacy. * Most survivors of any cancer can still enjoy sexual touching and sexual closeness. * Talk to your doctor, nurse, or therapist to learn proven ideas for solving problems. Focus on your best features. * Make the most of them with makeup, clothes, or accessories. Feel good about yourself. Find new shopping sources for products that help you look better. * Ask your local cancer support organization, your social worker, and other survivors for ideas and addresses. (See Resources, below). OPTIONS YOU FIND (Use this space to record ideas and resources that you can use if a problem arises-or to pass on to another cancer survivor.) Resources ADDITIONAL READING Cancer patients, their families and friends, and others may find the following booklets useful. They are available free of charge by calling the Cancer Information Service (1-800-4-CANCER) or writing: Office of Cancer Communications National Cancer Institute Building 31, Room 10A24 Bethesda, MD 20892 Chemotherapy and You: A Guide to Self-Help During Treatment Explains chemotherapy and addresses problems and concerns of patients undergoing this treatment. Datos sobre el tratamiento de quimioterapia contra el cancer Introduces chemotherapy to Spanish-speaking persons. Eating Hints: Recipes and Tips for Better Nutrition During Cancer Treatment Provides recipes that help patients meet their needs for good nutrition during treatment. El tratamiento de radioterapia: guia para el paciente durante el tratamiento Provides an explanation of radiation therapy for Spanish-speaking persons. Radiation Therapy and You: A Guide to Self-Help During Treatment Explains radiation therapy and addresses concerns of patients receiving radiation treatment. Taking Time: Support for People With Cancer and the People Who Care About Them Discusses the emotional side of cancer-how to deal with the disease and to learn to talk with friends, family members, and others about cancer. What Are Clinical Trials All About? Explains clinical trials (studies of new cancer treatments) to help patients decide if they want to take part in a trial. What You Need to Know About... This is a series of booklets. Each provides information about a specific type of cancer. These booklets discuss symptoms, diagnosis, treatment, emotional issues, and questions to ask the doctor about a number of types of cancer. Some are available in Spanish. When Cancer Recurs: Meeting the Challenge Again Explains the ways that cancer may recur and discusses types of treatment and methods of coping with recurrence. Magazines and Journals Hundreds of articles on cancer are published each year. You can locate those that appear in popular magazines and journals in the Reader's Guide to Periodical Literature, which is available in most public libraries. If you need help using the guide or finding an article, ask a librarian. You can find articles published in over 3,000 health-science journals by looking in Index Medicus. Medical libraries, most colleges and universities, and some public libraries carry this resource. You can also locate cancer-related articles published in technical journals by using or having access to the National Library of Medicine's (NLM) MEDLARS program. MEDLARS, in turn, provides access to CANCERLIT, a computerized database system which contains over 800,000 citations and abstracts of articles on cancer from technical literature published since 1963. Librarians in medical libraries and in libraries at nursing schools can retrieve information stored in MEDLARS. However, if you or your doctor want to get information using your own computer system, you can contact NLM at the following address or telephone number. MEDLARS MANAGEMENT SECTION National Library of Medicine 8600 Rockville Pike Bethesda, MD 20894 (301) 496-6193 (800) 638-8480 Your local library also may be able to do a computer information search. If it belongs to the Federal Library System, you may be able to borrow government publications. Notes from Visits to Your Doctors (Keep a record of the questions you have about your care and the answers you receive. Date each entry for future reference.) DATE OF VISIT QUESTIONS ANSWERS ADDITIONAL RESOURCES Looking Good Some people who've had cancer treatment must adjust to a new body image. Cosmetic aids such as artificial limbs or wigs may help boost selfconfidence as well as provide physical comfort. After a mastectomy, for example, a woman may wear a breast form to give shape and weight to where her breast was removed. Patients who lose hair due to chemotherapy may wear wigs. If you are a woman interested in making the most of your appearance, contact: * The Look Good, Feel Better Program through local American Cancer Society offices or at 1-800-395-LOOK. If you are over 65, have had a mastectomy and want reconstructive surgery or a prosthesis you may want to contact: * Your local Medicare office. Medicare covers either of these if necessary due to a mastectomy. The coverage is the same in all states. If you plan to buy a cosmetic aid, you may want to contact: * Your local American Cancer Society unit, which may have a list of stores that sell them. The unit may also maintain a "wig bank," a collection of wigs that are given free of charge to cancer patients. * The Cancer Information Service at 1-8004-CANCER, which may have a list of local stores that sell the product you need. * Your insurance company. Some policies cover some cosmetic aids. Books on cosmetic aids may also be useful: * Looking Up: The Complete Guide to Looking and Feeling Good for the Recovering Cancer Patient, Suzy Kalter. McGraw-Hill: 1987-Provides tips (with photos) on hair care, wigs, makeup, and exercise. (Out of print; check your local library to find a copy.) * Buyer's Guide to Wigs and Hairpieces. This 2-page summary is available, as well as additional literature as needed. Ruth L. Weintraub Co. Inc., 420 Madison Avenue, Suite 406, New York, NY 10017, (212) 838-1333. * A full-color catalogue of wigs for medical purposes. Available nationwide. Jacques Darcel, 50 West 57th Street, New York, NY 10019, (800) 445-1897. Sexual Concerns Cancer and cancer treatment may affect sexual relationships. Although treatment for cancer sometimes causes sexual problems, often a patient's or partner's feelings about cancer and sex can make a difference. Your doctor, nurse, or social worker may be able to help. They may also be able to help you find a sex therapist who helps couples understand their sexual problems and suggests ways to deal with them. The following association can provide names of sex therapists in your area. * American Association of Sex Educators, Counselors, and Therapists (ASECT) Suite 1717 435 North Michigan Avenue Chicago, IL 60611 (312) 644-0828 If you write ASECT, be sure to include a selfaddressed, stamped envelope, and a $2.00 handling fee. The American Cancer Society has two publications on sexuality that may be helpful. Contact your local unit or the national office at 1-800-ACS-2345 to get copies of: * Sexuality and Cancer: For the Woman Who Has Cancer and Her Partner * Sexuality and Cancer: For the Man Who Has Cancer and His Partner Taking Care of your Feelings What You Can Expect Briefs: Surviving Cancer-Hopeful Trends Tips for Coping With Survivor Stress Options for Getting Emotional Support Notes Resources Taking Care of Your Feelings What You Can Expect What kinds of feelings are "normal"? There is no "right" way to feel; the important thing is to handle your emotions in a way that works for you. Many survivors find that the key for them is talking their feelings out-with family and friends, health professionals, other patients, and counselors such as clergy and psychotherapists. The following stories show the range of feelings that many cancer survivors have. Each of them is a normal reaction that is often part of the cancer survivor's life. "In the first 6 months after my cancer treatment I saw my cancer more as a threat to my life plans for marriage and a career than I did as a threat to my life. I felt the most depressed and anxious during the first 3 months, but then I started to get back to normal. I say started, because I'm not sure I'm there yet. It's getting better, but I still feel a little off balance." -- Marcia B. "I don't intend to focus on cancer for the rest of my life. I follow my care plan but I don't dwell on the disease or talk about it to others. Some (I suppose) well-meaning people at the office said that my reaction is called denial, and that it was bad for me. I talked about it with the doctor, and he said denial can be positive when it helps you get on with your life. I have my ups and downs like everyone else, but I feel good about the way I'm handling my disease." -- Joe K. "I have to say that there's been one positive result of my having had cancer. It made me look at the real possibility of my own death, something I had never thought much about before. That made me take a hard look at my life and decide what really mattered to me. As a survivor, I now see every day as a precious gift." -- Vicki W. "My cancer treatment ended 10 years ago, but I still get anxious every time I go in for a checkup. The nurse told me that's a common reaction." -- Dave L. "I was very surprised at how few of my friends really made the effort to be there for me. I talked to the nurse about this during my last checkup. She said that people often want to help but they don't know how-and they may be embarrassed to ask. So I decided to make the first move with some of the people I cared about most. It was hard, but I think I broke down a wall when I spoke openly about my feelings and my needs. I feel much more in touch and supported now." -- Rhonda L. "My cancer has led to some difficult family situations. The hardest thing was learning to adjust to different family roles. My wife went back to work during my recovery, and my teenage daughter had to take care of the house. As I got better, none of us was sure what roles were 'normal,' and my daughter especially didn't want any changes that limited her independence. At that point the doctor suggested family therapy. I had my doubts, but seeing the real problems behind the obvious problems made a difference. After we worked through solutions together, I think we're closer now than ever before." -- Ralph Y. "The most important source of hope and support for me has been my faith in God. When I face my fears arid uncertainties, I know I'm not alone." -- Frances C. "Surviving cancer has been not one condition, but many. It was such happiness at the birth of a daughter in the midst of concerns about the future. It was the joy of eating Chinese food for the first time after radiation burns in my esophagus had healed. It has been the anxiety of waiting for test results and the fear that the cancer would recur. It has been having a positive attitude and wanting to strangle the people who told me that was all it would take." -- Frank T. "People have recovered from every type of cancer, no matter how gloomy the first reports. Yes, we're all going to die someday of something. But I plan to push that day back as far as I can, and to go out fighting whenever the time comes." -- Betty R. BRIEFS Surviving Cancer: Hopeful Trends * There are 8 million cancer survivors in America today. * 4 million people have been cured of their cancer. * The number of people who have survived cancer for 5 or more years has increased significantly since 1973 for cancers of the colon, prostate, testis, and bladder, and for Hodgkin's disease and leukemia. * Studies show that for most patients the emotional upset after cancer diagnosis and treatment decreases over time. Tips for Coping With Survivor Stress The following tips come from the experiences of survivors in the American Cancer Society's "I Can Cope" program. They are adapted from ideas appearing in a book co-authored by the program's co-founder, Judi Johnson, I Can Cope-Staying Healthy With Cancer. * Be kind to yourself. Instead of telling yourself you can't do something you should do, focus on what you can do and what you want to do. Instead of telling yourself you look awful, think of ways to make the most of your best features. * Help others. Reaching out to someone else can reduce the stress caused by brooding. * Don't be afraid to say no. Polite but firm refusals help you stay in control of your life. * Talk about your concerns. It's the best way to release them. * Learn to pace yourself. Stop before you get tired. * Give in sometimes. Not every argument is worth winning. * Get enough exercise. It's a great way to get rid of tension and aggression in a positive way. * Take time for activities you enjoy, whether it's a hobby, club, or special project. * Take one thing at a time. If you're feeling overwhelmed, divide your list into manageable parts. * Set priorities. Don't try to be Superman or Superwoman. * Solve problems like an expert. First, identify the problem and write it down so it's clear in your mind. Second, list your options, with the pros and cons of each. Third, choose a plan. Fourth, list the steps to accomplish it. Then give yourself a deadline, and act. Sometimes just having a plan can reduce the stress of the problem. * Focus on the positive. If you have a setback, think about all of the good things you've done. * Eat properly. * Get enough sleep. * Laugh at least once a day. Is a Survivors' Group Right for You? If you answer "yes" to most of the following questions, joining a cancer survivors' group may be a positive step for you. * Are you comfortable sharing your feelings with others in a similar situation? * Are you interested in hearing others' feelings about their experiences? * Could you benefit from the advice of others who have gone through cancer treatment? * Do you enjoy being part of a group? * Do you have helpful information or hints to share with others? * Would reaching out to support other cancer survivors give you satisfaction? * Would you feel comfortable working with survivors who have different ways of facing forward? * Are you interested in learning more about cancer and survivor issues? NOTES Options for Getting Emotional Support Join a cancer survivors' support group. * Ask your doctor, nurse, or social worker about programs available at local hospitals. * Call your local cancer support organizations, including the American Cancer Society, which may sponsor groups in your area. Check the telephone book for contact information. Talk to your family and friends. * Help them understand how they can help you. * Talk about their needs for support. * Talk to your clergyman or clergywoman. Consider professional mental health assistance. * Consult a psychologist, nurse therapist, clinical social worker, or psychiatrist. * For marital or family issues, consult a licensed marriage and family therapist. Work with someone on the medical team to solve problems. * Get help. in dealing with your hospital, clinic, or health maintenance organization. * Ask about health concerns that cause you stress. Support yourself. * Draw on your own strength. * Read about how others cope. Ask at your local bookstore for accounts by cancer survivors. Reach out to others. * Helping others can help you feel stronger and more in control. * For some people, helping other cancer survivors is a satisfying way to reach out. Resources ADDITIONAL READING Taking Time: Support for People With Cancer and the People Who Care About Them Discusses the emotional side of cancer-how to deal with the disease and learn to talk with friends, family members, and others about cancer. Available free of charge by calling The Cancer Information Service at 1-800-4-CANCER. Newsletters * The Networker National Coalition for Cancer Survivorship 1010 Wayne Avenue Suite 300 Silver Spring, MD 20910 (301) 585-2616 * Surviving Pat Fobair Stanford University Medical Center Department of Radiation Oncology Division of Radiation Therapy, Room H013 300 Pasteur Drive Stanford, CA 94305 (415) 723-7881 ADDITIONAL RESOURCES Cancer Survivor Groups To find out about groups in your area, contact: * Your local Cancer Information Service at 1-800-4-CANCER. * Your local office of the American Cancer Society at 1-800-ACS-2345. * Your hospital social services department. Family Concerns To help alleviate or resolve tensions that cancer may cause in families and other close relationships, the following associations can provide referrals to marriage and family counselors: * Your local Cancer Information Service at 1-800-4-CANCER. * Your local religious and community social service agencies (check the yellow pages for the telephone numbers). * Your local senior centers. * Your local community mental health centers. OPTIONS YOU FIND (Use this space to record ideas and resources that you can use if a problem recurs-or to pass on to another cancer survivor.) * American Association for Marriage and Family Therapy 1100 17th Street, NW Washington, DC 20036 (202) 452-0109 * American Association of Sex Educators, Counselors, and Therapists (ASECT) Suite 1717 435 North Michigan Avenue Chicago, IL 60611 (312) 644-0828 * American Family Therapy Association 2020 Pennsylvania Avenue Suite 273 Washington, DC 20006 (202) 994-2776 * National Association of Social Workers 750 First Street, NE Suite 700 Washington, DC 20020 (202) 408-8600 NOTES (Use this space to note contact information for local resources you find.) Managing Insurance Issues What You Can Expect Briefs: States That Provide Health Insurance Tips for Making the Most of Your Insurance Options for Getting Insurance After Cancer Treatment Resources Notes Managing Insurance Issues What You Can Expect If you are like most cancer survivors, the costs of initial treatment and continuing care are a major concern. What happens to insurance coverage and costs after you've had treatment for cancer? In general, people who had life and health insurance before treatment are able to keep it, although costs and benefits may change. Those who change jobs or apply for new policies, however, often face problems. The stories of the following cancer survivors show common post-treatment insurance experiences. "I'm grateful my insurance benefits are safe at my company. I only wish my job had more going for it. I'm working hard to find something that pays better and offers more growth. But along with finding the right job, I'm also looking for a good benefits package that is fully open to a cancer survivor. So far, the two haven't come together." -- Ron L. "I never even thought about life insurance before I got cancer. My wife and I are young, and we had enough expenses. But after my diagnosis, I felt like I should get some insurance for my wife's sake. "It turned out to be harder than I'd expected. Several companies refused to accept me at all. I have coverage now, but the policy has an 'exclusion' for cancer: it pays nothing if cancer is the cause of death. My doctor says it's very unlikely that my cancer will recur. But I'm still looking for another policy where having had cancer doesn't hurt me." -- Burt W. "I knew I had health insurance, but I had no idea what it covered. And when I went into the hospital, the last thing on my mind was the cost of the treatment. When the bills started coming in, I was shocked that my company's insurance policy didn't cover everything. At first I felt like everything about my health had gone out of my control. But I started to take charge again by learning about the claims process and pleading my own case." -- Bill G. "My insurance company paid for all of my cancer care. But my radiation treatment made me unable to father a child. When my wife and I looked into artificial insemination, we found that insurance would not cover the cost of donor sperm. We decided to adopt a child instead." -- Brian K. "When my health insurance company cancelled my individual policy after my cancer treatment, I started checking into other options. My best bet turned out to be joining my new company's group policy, even though employees have to pay all their own premiums. The benefits are pretty good, and they accepted me despite the cancer history. But I had to fill out a health history and have a physical exam that none of my coworkers had to complete. There was also a 5 year "waiting period" before I could submit any bills for cancer care. Luckily I got through the 5 years with no major expenses." -- Jean T. "I had been covered under my husband's health insurance policy, and we had no problems-until he changed jobs. When the new company saw my cancer history, they denied him family coverage. I was finally able to get insurance through my state health insurance pool." -- Laura S. "My health insurance after cancer treatment worked pretty much like my car insurance: After I had an accident, my rates went up." -- Barbara K. Tips for Making the Most of Your Insurance GET ALL THE BENEFITS YOUR POLICY PROVIDES. * Get a copy of your insurance policies.and find out exactly what your coverage includes. * Keep careful records of all your covered expenses and claims. * File claims for all covered costs. Surprisingly, many cancer survivors don't take full advantage of their insurance, either because they don't know about a benefit or are confused/put off by the paperwork. * Get help in filing a claim if you need it. If friends or family can't assist, ask a social worker for help. Private companies and some community organizations also offer insurance-filing aid. * If your claim is turned down, file again. Ask your doctor to explain to the company why the services meet the requirements for coverage under your policy. If you are turned down again, find out if the company has an appeals process. BRIEFS States that Provide Health Insurance Coverage for the Hard-to-insure A number of states currently sell comprehensive health insurance to state residents with serious medical conditions who can't find a company to insure them. (Several other states have programs planned that are not yet operational.) Listed below are those states and the companies that run their programs. IF YOUR STATE ISN'T LISTED, YOU MAY WANT TO CONTACT THE STATE DEPARTMENT OF INSURANCE TO FIND OUT IF SUCH PROGRAMS ARE AVAILABLE IN YOUR STATE. CALL DIRECTORY ASSISTANCE IN YOUR STATE CAPITAL FOR CONTACT INFORMATION. Arizona: * Informal program with each case handled individually. Arizona Department of Insurance 3030 North 3rd Street, Suite 1100 Emil Barberich (Hotline Monitor) Phoenix, AZ 85012 (800) 544-9208 (602) 255-2113 California: * Risk pool currently full; waiting list maintained for applicants. California Major Risk Medical Insurance Program c/o Blue Cross of California P.O. Box 6666 Oxnard, CA 93031-6666 (800) 289-6574 Colorado: * Colorado Uninsurable Health Insurance Plan Blue Cross and Blue Shield of Colorado 700 Broadway Denver, CO 80273 (800) 423-6174 (303) 831-2391 Connecticut: * Health Reinsurance Association of Connecticut Travelers' Insurance Company One Tower Square 2NB Hartford, CT 06183-2937 (203)527-5369 Florida: * Risk pool currently full; waiting list maintained for applicants. Florida Comprehensive Health Association Blue Cross and Blue Shield of Florida P.O. Box 45216 Jacksonville, FL 32232-5216 (800) 766-3242 Georgia: * Program not yet operational. For information on startup, contact: Georgia Insurance Department #2 Martin Luther King Drive, SE Atlanta, GA 30334 (404) 656-6054 Hawaii: * Program provides very limited benefits (basic preventive care). State Health Insurance Program 1000 Bishop Street, Room 908 Honolulu, HI 96813 (808) 586-4141 Illinois: * Risk pool currently full; waiting list maintained for applicants. Illinois Comprehensive Health Insurance Plan Blue Cross and Blue Shield of Illinois P.O. Box 2401 ICHIP Administrative Unit, 18th Floor Chicago, IL 60690 (800) 367-6410 Indiana: * Indiana Comprehensive Health Insurance Association 9525 Delegates Row P.O. Box 40438 Indianapolis, IN 46240-0438 (800) 552-7921 (317) 581-1005 Iowa: * Iowa Comprehensive Health Insurance Association Mutual of Omaha P.O. Box 31746 Omaha, NE 68131\ (800) 445-8603 Kansas: * Program not yet operational. For information on startup, contact: Kansas Insurance Department Accident and Health Division 420 SW 9th Street Topeka, KS 66612 (913) 296-3071 Louisiana: * Program not yet operational. For information on startup, contact: Louisiana Health Insurance Association 7904 Wrenwood, Suite D Baton Rouge, LA 70809 (504) 926-6245 Maine: * Maine High Risk Health Organization Mutual of Omaha P.O. Box 31726 Omaha, NE 68131 (800) 228-0460 Minnesota: * Minnesota Comprehensive Health Association P.O. Box 64566 St. Paul, MN 55164 (800) 382-2000, ext. 5290 (612) 456-5290 Mississippi: * Mississippi Comprehensive Health Insurance Risk Pool Association P.O. Box 13748 Jackson, MS 39236 (601) 362-0799 Missouri: * Missouri Health Insurance Pool 4444 Forest Park St. Louis, MO 63108 (800) 843-6447 Montana: * Montana Comprehensive Health Association 404 Fuller Avenue P.O. Box 5683 Helena, MT 59604 (800) 447-7828 (406) 444-8200 Nebraska: * Nebraska Comprehensive Health Insurance Pool Blue Cross and Blue Shield of Nebraska P.O. Box 3248 Main Post Office Station Omaha, NE 68180-0001 (800) 356-3485 New Mexico: * New Mexico Comprehensive Health Insurance Pool Blue Cross and Blue Shield of New Mexico 12800 Indian School Road, NE Albuquerque, NM 87112 (800) 432-0750 North Dakota: * Comprehensive Health Association of North Dakota 4510 13th Avenue, SW Fargo, ND 58121 (701) 282-1100 Oregon: * Blue Cross and Blue Shield of Oregon P.O. Box 1271 Portland, OR 97207 (800) 848-7280 South Carolina: * South Carolina Health Insurance Pool P.O. Box 61173 Columbia, SC 29260 (800) 868-2503 (803) 736-0043 Tennessee: * Tennessee Comprehensive Health Insurance Pool P.O. Box 6249 Chattanooga, TN 37401-6249 (800) 533-9892 (615)755-5918 Texas: * Program not yet operational. For information on startup, contact: Blue Cross and Blue Shield of Texas, Inc. High Risk Pool P.O. Box 655082 Dallas, TX 75265-5082 (800) 338-2227 Utah: * Utah Comprehensive Health Insurance Pool P.O. Box 27797 Salt Lake City, UT 84127 (800) 624-6519 (801) 481-6063 Washington: * Washington State Health Insurance Pool Mutual of Omaha P.O. Box 31726 Omaha, NE 68131 (800) 228-4044 Wisconsin: * Wisconsin Health Insurance Risk Sharing Plan Mutual of Omaha P.O. Box 31746 Omaha, NE 68131 (800) 228-7044 Wyoming: * Wyoming Health Insurance Pool P.O. Box 2256 Cheyenne, WY 82003 (800) 442-2764 The following states have Blue Cross and Blue Shield plans that offer some policy year-round or at a designated time period for the hard-to-insure. Many states have restrictions/waiting periods based on the individual's medical history. Alaska: * Short-term program that provides 6-month coverage. Blue Cross of Washington and Alaska 2550 Denali Street, Suite 600 Anchorage, AK 99503 (907) 258-5065 District of Columbia: * Plan available to residents of the Washington, DC metropolitan area: the District of Columbia (DC), Montgomery and Prince George's County in Maryland (MD), and most of Northern Virginia (VA). Enrollment is available in spring and fall for MD/DC residents, year-round for VA residents. Blue Cross and Blue Shield of the National Capital Area Department 5853 550 12th Street, SW Washington, DC 20065 (202) 484-9100 Maryland: * Enrollment available in the spring and fall each year. Blue Cross and Blue Shield Open Enrollment Policy 10455 Mill Run Circle Owings Mills, MD 21117 (800) 544-8703 Massachusetts: * Year-round enrollment available. Blue Cross and Blue Shield of Massachusetts Non-group Coverage P.O. Box 9140 North Quincy, MA 02171-9140 (800) 822-2700 (617) 956-3934 Michigan: * Year-round enrollment available. Blue Cross and Blue Shield of Michigan 600 East Lafayette Department B613 Detroit, MI 48226 (800) 637-2227 (517) 322-9470 New Hampshire: * Year-round enrollment available. Blue Cross and Blue Shield of New Hampshire 2 Pillsbury Street Concord, NH 03306 (603) 228-0161 New Jersey: * Year-round enrollment available. Blue Cross and Blue Shield of New Jersey 33 Washington Street Newark, NJ 07102 (201) 491-2729 New York: * Year-round enrollment available. Empire Blue Cross and Blue Shield Tradition Plus 622 Third Avenue New York, NY 10017 (212)476-7111 North Carolina: * Year-round enrollment available. Blue Cross and Blue Shield of North Carolina Access Plan P.O. Box 2291 Durham, NC 27707 (919) 490-3829 Pennsylvania: * Year-round enrollment available. Independence Blue Cross and Pennsylvania Blue Shield 1901 Market Street Philadelphia, PA 19103-1480 (800) 453-2566 (215) 568-8204 Rhode Island: * Enrollment available in fall of each year. Blue Cross and Blue Shield of Rhode Island 444 Westminster Street Providence, RI 02903 (800) 527-7290 (401) 831-7300 Vermont: * Year-round enrollment available. Blue Cross and Blue Shield of Vermont P.O. Box 186 Montpelier, VT 05601 (800) 247-2583 (802) 223-6131 Virginia: * Year-round enrollment available. Blue Cross and Blue Shield of Virginia P.O. Box 13047 Roanoke, VA 24045 (800) 334-7676 KEEP INSURANCE NEEDS IN MIND WHEN YOU ARE CHANGING JOB STATUS. * Don't leave a job with insurance benefits until you have a new job with good coverage or you have made other plans for insurance. This is also an important thing for your spouse to keep in mind if you are covered under his or her policy. * Look at the differences in insurance coverage and other benefits offered by various employers. You may be better off taking a new job with a lower salary that has better insurance coverage. Consider continuing to take part in your current company's group plan after you leave. If a new job does not work out, you could be left with no coverage. Federal law (Public Law 99-272, the Consolidated Omnibus Budget Reconciliation Act or COBRA) requires many employers to allow employees who quit, are let go, or whose hours are reduced to pay their own premiums for the company's group plan. This protection lasts 18 months for employees (up to 29 months if they lose their jobs due to disability and are eligible for Social Security disability benefits at the time they leave the job) and 36 months for their dependents. If an employee leaves a company and takes a new job, continuation coverage by the former company can be kept for up to 18 months if the new company's coverage is limited or excludes a pre-existing condition, such as cancer. (COBRA applies to employers with 20 or more workers who already offer group health insurance.) Contact your personnel department to enroll. In addition, you can contact your state insurance commissioner to learn if your state has continuation-of-benefits laws. They may help you receive additional insurance rights protection. * Take advantage of your right in some company group policies to convert to an individual policy when you leave the company or retire. Typically, a cancer survivor can obtain coverage for about a year under a converted policy. Premiums for individual policies, however, may be considerably higher and less comprehensive. You may want to check around with different companies for the best coverage at the lowest rates because each may have a different system for assessing premiums. * Look for work in a large company, whose group insurance plans rarely exclude employees with a history of illness. What Your Health Insurance Coverage Should Include When looking into a new health insurance plan, it's a good idea to make sure that the coverage provided suits your health care needs. Health insurance for the cancer survivor should provide, at the very least, the following: * Benefits. Inpatient hospital care, physician services, laboratory and x-ray services, prenatal care, inpatient psychiatric care, outpatient services, and nursing home care. Prescription drug coverage may be important if you will be taking a medicine for a long time. * Financial protection. The insurer should pay at least 80 percent of the covered services, except for inpatient psychiatric care, which may require that the policyholder pay more than 20 percent of expenses. In addition, the insurer should pay at least $250,000 for catastrophic illness coverage, with the patient paying no more than 30 percent of his or her income toward these expenses. Confirm conversations with insurance representatives in writing. If you think the representative is wrong, ask to speak with his/her supervisor. WORK WITH YOUR DOCTORS TO GET MAXIMUM COVERAGE OF CLINICAL TRIALS COSTS. Many clinical trials (treatment studies) offer some part of care free of charge. But some insurers will not cover certain costs when a new treatment is under study. If you are taking part in or considering a clinical trial: * Ask your doctor about the experience of other patients in the trial. Have their insurers paid for their care? Have there been any consistent problems? * Talk to your doctor about the paperwork he or she submits to your insurer. Often the way the doctor describes a treatment can help or hurt your chances of insurance coverage. * Be sure you know what's in your policy. Check it to see if there's a specific exclusion for "experimental treatment." Many companies handle new treatments on a case-by-case basis, rather than having a blanket policy. You always can ask about their coverage of specific therapies. However, some patients say that their questions may have hurt their chances for coverage by raising a red flag. FIND WAYS TO SUPPLEMENT YOUR INSURANCE. * Take all the Federal income tax deductions for health care costs that you are allowed. Examples include gas mileage for trips to and from medical appointments, out-of-pocket costs for prescription drugs and equipment, and meals during lengthy medical visits. Options for Getting Insurance After Cancer Treatment Obtain dependent coverage under your spouse's insurance plan. Join your current company plan. Join a health maintenance organization. * Look for open enrollment periods when you may be accepted regardless of your health history. Request group insurance through a professional, fraternal, membership, or political organization to which you belong. Use Medicare. * Covers most people age 65 or older and those who are permanently disabled. Use Medicaid or other state or local benefits. * Covers people who are unemployed or in low-income brackets. * Coverage and eligibility criteria differ from state to state; check with your local office. Get coverage through an independent broker. Join a state "high risk" health insurance pool for people who cannot get conventional coverage. (See Briefs, page 24.) Consider Filing an Insurance Complaint If You Feel You Have Been Treated Unfairly. IF YOUR INSURER IS... IT IS REGULATED BY: A private company Your state (e.g., Blue Cross, department of Prudential) insurance A licensed health Your state care service plan department of (e.g., Kaiser and corporations, other HMOs) division of health care service plans Federally qualified U.S. Department of Health Maintenance Health and Human Organization Services, Division of Compliance Private employer or U.S. Department of union self-insurance Labor, Office of or self-financed plans Pension & Welfare Benefits Medicaid (sometimes Your state called other names; department of e.g., in California social services it's known as MediCal) Medicare Supplemental U.S. Social Security Security Income Administration Social Security benefits Veterans Benefits Department of C.H.A.M.P.U.S. Veterans Affairs OPTIONS YOU FIND (Use this space to record ideas and resources that you can use if a problem arises-or to pass on to another cancer survivor.) Resources ADDITIONAL READING With so many issues to deal with, cancer survivors may not be aware of their needs for specific insurance coverage and benefits. Materials that can help include: Comprehensive Health Insurance for High Risk Individuals: A State-by-state Analysis CA Support Services 2626 East 82nd Street, Suite 325 Bloomington, MN 55425 (800) 445-1525 There is a charge for this product. National Insurance Consumer Organization (NICO) 121 North Payne Street Alexandria, VA 22314 (703) 549-8050 Offers general information only. For a list of NICO publications, send a self-addressed stamped envelope. The Consumer's Guide to Disability Insurance Publication No. C104 Health Insurance Association of America (HIAA) 1025 Connecticut Avenue, NW, Suite 1200 Washington, DC 20036-3998 Explains various aspects of disability insurance. Available free of charge. The Consumer's Guide to Health Insurance Publication No. C103 Health Insurance Association of America (HIAA) 1025 Connecticut Avenue, NW, Suite 1200 Washington, DC 20036-3998 Explains various aspects of health insurance. Available free of charge. Health Insurance: Risk Pools Pub. #HRD-88-66BR U.S. General Accounting Office P.O. Box 6015 Gaithersburg, MD 20877 (202) 275-6241 FAX (301) 258-4066 First copy available free of charge, additional copies available for $2.00 per booklet. ADDITIONAL RESOURCES Many people need help paying for medical costs that aren't covered by their insurance. For financial assistance, you may want to contact: Local Groups * Local cancer support organizations, which may provide referrals to community sources for financial aid. * Your local office on aging, if you are an older adult. * The county board of assistance or welfare office. United States Government The U.S. Government has a number of programs designed to help people with low incomes or disabilities pay their bills. For information, call your local office of: * Aid to Families with Dependent Children (AFDC) and Food Stamps Programs. Look for the numbers under the Local Government, Social Services, section of your telephone book. * Medicare/Medicaid Information. Call your local social security office to receive an explanation of the medical costs covered by these Federal health insurance programs. Note: For people under age 65, Medicare coverage does not begin until 2 years from the date they are declared disabled. * Social Security Administration. Call 1-800-772-1234 for general information on social security benefits you may be eligible to receive. * The Department of Veterans Affairs. Request information about medical benefits for veterans and their dependents. * The Cancer Information Service of the National Cancer Institute. Call 1-800-4-CANCER to request information about drug companies with assistance programs for cancer patients with low incomes. Your Hospital Financial help may also be available within hospitals. To find out about setting up monthly payment plans for hospital bills, contact your: * Hospital patient advocate. * Hospital financial aid counselor. * Hospital social worker. * Patient representative in the hospital business office. RESOURCES YOU FIND (Use this space to note contact information for local resources you find.) NOTES Earning a Living What You Can Expect Briefs: Cancer Survivors as Employees Your Protection Under Law Tips for Dealing With Coworkers After Cancer Treatment Tips for Changing Jobs After Cancer Treatment Options for Handling Job Problems Resources Earning a Living What You Can Expect Many cancer survivors wonder whether having a cancer history will make a difference in their job prospects. Common questions include: Will I be able to return to work? Take time off for more treatment if I need it? Work as hard as I once did? Advance in my career? There is no one answer to these questions. Some people choose not to go back to their jobs while others are not physically able. But most work-able cancer survivors do return to work. It sometimes takes a year or more before survivors are ready to return full-time, but once they go back they are almost always back to stay. Cancer survivors have included professional and Olympic athletes, business executives, artists and musicians, film stars, and world leaders. When cancer survivors do return to work, some have highly supportive employers who help ease their change from patient back to employee. Others get back to the routine without much help from their company or organization. And at some work places, wrong ideas and false fears about cancer cause job-related problems that survivors must overcome. The following stories reflect the workplace experiences of cancer survivors. "After I had my colostomy, my employer asked me to quit my job because the cancer was upsetting my fellow workers. He said a demotion or transfer was possible if l didn't agree. Except for my wife, that job was my whole world. So rather than quit, I decided to fight for it." -- Jon H. "My employer denies that my treatment last year for cancer had anything to do with my not getting a promotion and raise. My boss said I was being defensive when I suggested that I was being discriminated against because of my illness. He said he just didn't feel I was ready for the responsibility at this time. I don't know what to believe, but I'm looking into my options." -- Betty C. "When I went back to work, my boss was honest with me. She said that my situation had been discussed at a managers' meeting. Some people had questioned what impact my coming back would have on the company's insurance rates. Her boss asked how she planned to get the job done with an employee she could no longer count on to stay healthy. Fortunately she did some research and found out that the turnover rate, absenteeism records, and work performance of people with a cancer history are very much the same as those of people without one. Her facts helped correct management's wrong ideas." -- Roy P. "I wasn't happy with my job before my cancer was diagnosed, and I'm no happier with it now that I'm finished treatment and back to work. At first I was just grateful that they took me back. I stopped job hunting for fear that my cancer history would lock me out of better chances. But a friend convinced me that I shouldn't give up before I started. I haven't found the job I want yet, but I have found employers who've given me fair consideration." -- Jean D. Your Protection Under Law On July 26, 1992, the employment provisions of the Americans with Disabilities Act (ADA) went into effect. The ADA bans discrimination by both private and public employers against qualified workers who have disabilities or histories of disability. While the ADA does not specifically include cancer survivors, it is expected that survivors will be included based on past legal rulings. For two years, the ADA will cover private employers with 25 or more workers. Thereafter, it will cover employers with 15 or more workers. Under this law employers: * Cannot require you to take pre-employment exams designed to screen out people with disabilities such as histories of cancer. * Can ask you medical questions only after you are offered employment and only if the questions relate specifically to the job. Complaints filed under this law are handled by the local offices of the Equal Employment Opportunities Commission (EEOC). These offices can be located by calling 1-800-USA-EEOC (1-800-872-3362). Other protection will continue to be provided by the Federal Rehabilitation Act of 1973 which states that federal employers or companies receiving federal funds cannot discriminate against handicapped workers, including cancer survivors. This law protects cancer survivors in hiring practices, promotions, transfers, and layoffs on the federal level. In addition to federal protection, you may be eligible for employment protection under state laws. To learn more about your legal rights, check with: * Your local American Cancer Society office. They have state-specific information pamphlets about cancer and employment discrimination. * Your social worker, who may know about laws in your state. He or she also can tell you which state agency is responsible for protecting your rights. * The National Coalition for Cancer Survivorship (See Resources, page 40). This group offers information and some legal referrals. * Your Congressional representative or senator. Staff working for these officials can give you information about federal and state laws. If you aren't sure who represents your district, call your library or the local chapter of the League of Women Voters. Tips for Dealing With Coworkers After Cancer Treatment When your coworkers hear about your illness, many of them will want to help but they won't know how. Others may be frightened by your situation, especially when they don't know much about cancer and today's potential for treatment and cure. Here are some ideas for helping them-and you to resume a good working relationship. * Plan how you will deal publicly with your cancer when you are back on the job. There is no "right" way to interact with others about your illness. Some cancer survivors don't want to focus on their cancer once they are back at work or to be associated with the disease in people's minds. Others are very open with coworkers about their experiences. They may have a frank discussion with their manager or close coworkers to air concerns, correct wrong ideas, and decide how to work together. The best approach is the one that feels comfortable for you. * Keep up contacts during your treatment and recovery. Your coworkers will be concerned about you. If they have information about your treatment and progress, they will be less anxious and frightened. It is also important to stay "connected" to the people with whom you work. Talk by phone. When you are able, have lunch with friends or stop in for an office party. Plan to rest before and after if necessary. Your return to work will be easier for you and your coworkers if you have stayed involved. * Ask your employer to educate company employees about cancer. Research has found that people have three major myths about cancer that sometimes affect their attitudes towards cancer survivors: Myth #1 -- Cancer is a death sentence. Myth #2 -- Cancer is contagious. Myth #3 -- Cancer makes workers less productive. When coworkers learn the facts about cancer, they realize that these myths are untrue. Open discussion calms concerns and resolves fears. You may want to invite a speaker to discuss the issues such as an expert from a local cancer support organization or a doctor, nurse, or social worker who specializes in cancer. Your company medical department, personnel office, union, or employee assistance program are possible sponsors for an educational program. Information efforts might include making written materials available, holding a brown bag lunch discussion, or correcting wrong ideas at staff or union meetings. * Join (or form) a workplace support group for cancer survivors. Such groups may include only cancer survivors or both people with and without cancer. Depending on what members want, support groups can be anonymous or open. They can provide mutual emotional support for members, or they can make active efforts to stand up for the rights of cancer survivors. * Consider talking to other coworkers who learn they have cancer. Share your experiences and insights. Let people who have just found out they have cancer know that they are not alone. Offer to do something for them that you wish someone had done for you. * Get help if you need it. If coworkers' attitudes about cancer are making it hard to do your job, your first step may be trying to resolve the situation informally with the people involved. Correcting others' wrong ideas, without being defensive, can be difficult. But a direct approach may help things change for the better. When your own efforts don't work, you may want to get help. Your manager, shop steward, employee assistance counselor, or personnel office may be able to change coworkers' ideas, procedures, or the way your job fits in with others' to lessen problems. It is a good idea to have a workable solution to suggest when you raise a problem. (See "Ask your employer to adjust to your needs," page 39.) Most survivors understandably hesitate to "rock the boat," calling company attention to personal problems. When hurtful remarks or actions get you down, talking to a friend or counselor may help you put things in perspective. When coworker attitudes get in the way of doing your job, however, it becomes an issue that management needs to address. BRIEFS Cancer Survivors as Employees * 80 percent of people with cancer return to work after diagnosis. * Research shows that cancer survivors are as productive on the job as other workers and that they aren't absent from work any more often. * About 1 in 4 cancer survivors experience some form of employment discrimination. Tips for Changing Jobs After Cancer Treatment When you look for a new job after cancer treatment, it is important to anticipate the concerns that your cancer history may raise. Here are some ideas to help you prepare for the job search. * Don't discriminate against yourself. First, take an honest look at your current skills and capabilities. Then, apply for jobs you know you can do. Don't try to do more--or settle for less--than you are able to handle. * Organize your resume to your best advantage. For example, a chronological resume may raise questions if cancer treatment or recovery interrupted your career. To avoid pointing up those gaps, you might organize your resume by skills or achievements instead of by dates of employment. * Get a letter from your doctor (on office or hospital stationery) that explains your health situation for employers. Have the doctor talk specifically about your physical ability to perform the type of work you are seeking. If you are in good health now, ask the doctor to state that. The doctor also may include statements about the documented work ability of cancer survivors nationwide. * Don't lie about your cancer history if an employer or an application asks you directly. * Always qualify your "yes" with positive statements about your current health (including the doctor's letter noted above). * Don't volunteer health information if no one asks. You have no legal responsibility to mention your cancer unless it directly relates to the job you seek. * Practice answering possible questions about your health history before an interview. Be confident, and avoid sounding defensive. * Consider working with a job counselor, who can help you prepare fully for your job search. Options for Handling Job Problems Decide what you want to do about an employment problem. * Do you still want to work there? * Are you willing to take action to correct a problem? * Would you rather try to find a different job? Educate your employer. * Give management the facts about cancer survivors' dependability on the job. (See Briefs, page 37.) * Have your doctor explain how, if at all, your personal cancer history may affect your work or your schedule. Ask your employer to adjust to your needs. * Start by talking informally to your supervisor, the personnel office, employee assistance program, shop steward, or union representative. * Ask for a specific change that would make it easier for you to keep your job (e.g., flex-time, working at home, special equipment at the office). * Document your requests and the outcome for your records. The Federal Government and many private companies are now required to make "reasonable accommodations" to meet the needs of "disabled" employees if it does not cause the employer "undue hardship." Although cancer survivors may not feel "disabled," they may be legally protected under this umbrella term. Simple changes employers are required to make include: * Making facilities accessible (e.g., having desks, aisles, and restrooms that accommodate a wheelchair). * Allowing an employee to work a flexible schedule to adjust for treatment-related absences. * Changing the way a job works (e.g., letting an employee work part-time or share a job). The Job Accommodation Network can help you and your employer find out about accommodations that have worked for other companies. This hotline is a project of the President's Committee on the Employment of People with Disabilities. Call 1-800-526-7234 for more information. Get help working with your employer if you need it. * People that can support you include: your doctor or nurse; medical social workers; state rehabilitation workers; staff and volunteers at your local American Cancer Society; advocacy groups for disabled workers; your family and friends. Talk about your legal rights with the agencies that enforce anti-discrimination laws. * State commissions on discrimination. * State affirmative action offices. * U.S. Department of Health and Human Services, Office for Civil Rights in your region. * U.S. Department of Labor, Office of Federal Contract Compliance Programs in your region. A medical social worker or your local American Cancer Society can help you find out whom to contact. Talk to an attorney with experience in solving on-the-job discrimination problems. * Talk to your local bar association or cancer support organization to find a qualified lawyer. (The National Coalition for Cancer Survivorship offers limited referrals to attorneys with expertise in this area.) * Discuss any formal procedures your company may have for settling disputes. * Consider filing a discrimination complaint under state or Federal law. Resources Information about cancer is available from the sources listed below. You may wish to check for additional information at your local library or bookstore and from support groups in your community. ADDITIONAL READING Many cancer survivors have concerns related to their jobs. They may worry, for example, about job discrimination. The following publications can help you understand your legal rights as a person with a history of cancer: Cancer: Your Job, Insurance, and the Law American Cancer Society. Answers job and insurance-related questions often asked by cancer survivors. Free. Call 1-800-ACS-2345. Charting the Journey: An Almanac of Practical Resources for Cancer Survivors National Coalition for Cancer Survivorship Guides cancer survivors to resources for legal concerns, medical treatment, emotional support, self-help, and family issues. Call 301-585-2616 to order a copy. ADDITIONAL RESOURCES National Rehabilitation Information Center (NARIC) 8455 Colesville Road, Suite 935 Silver Spring, MD 20910 (800) 34-NARIC (voice/TDD) The National Rehabilitation Information Center provides information regarding job rehabilitation. National Coalition for Cancer Survivorship (NCCS) 1010 Wayne Avenue, Suite 300 Silver Spring, MD 20910 (301) 585-2616 The National Coalition for Cancer Survivorship is a network of independent groups and individuals concerned with survivorship and support of cancer survivors and their loved ones. NCCS's primary goal is to promote a national awareness of issues affecting cancer survivors. Its objectives are to: * Serve as a clearing house for information on services and materials for survivors. * Advocate the rights and interests of cancer survivors. * Encourage the study of survivorship. * Promote the development of cancer support activities. Cancer Information Service (CIS) The Cancer Information Service, a program of the National Cancer Institute, provides a nationwide telephone service for cancer patients and their families and friends, the public, and health care professionals. The staff can answer questions and can send booklets about cancer. They also may know about local resources and services. One tollfree number, 1-800-4-CANCER (1-800-422-6237), connects callers with the office that serves their area. Spanish-speaking staff members are available. PDQ People who have cancer, those who care about them, and doctors need up-to-date and accurate information about cancer treatment. To meet these needs, PDQ was developed by NCI. PDQ contains an up-to-date list of trials all over the country. Doctors can obtain an access code and use a personal computer to get PDQ information. Also, the Cancer Information Service, at 1-800-4-CANCER, can provide PDQ information to doctors, patients, and the public. American Cancer Society (ACS) 1599 Clifton Road, NE Atlanta, GA 30329 (800) ACS-2345 The American Cancer Society is a voluntary organization with a national office (at the above address) and local units all over the country. It supports research, conducts educational programs, and offers many services to patients and their families. To obtain information about services and activities in local areas, call the Society's toll-free number, 1-800-ACS-2345 (1-800-227-2345), or the number listed under "American Cancer Society" in the white pages of the telephone book. Moving Ahead Moving Ahead The National Cancer Institute hopes that this booklet has given you ideas and information you can use -- now and in the future. We encourage you to write to us about your own ideas and experiences. We plan to update Facing Forward as needed to include new advice, research findings, and relevant changes in laws or social policies. In compiling this book, we have heard from cancer survivors with many points of view. A common thread was respect for their fellow survivors and a recognition that some of the changes in their lives have been positive ones. One survivor, Bill, described it like this: "Cancer survivorship can be a catalyst for spiritual awakening, providing life with depth and poignancy. Survivors themselves are often gutsy and assertive, and they dare to take chances. They are often optimistic, independent-minded, and compassionate and have elevated self-esteem and pride .... New attitudes towards work, pleasure, and relationships develop with utmost clarity, while superficial distractions and frivolous people are filtered out .... [Survivors] share a new understanding of time, a sense of needing to make every minute count." National Coalition for Cancer Survivorship President (1989-90) Fitzhugh Mullan has compared cancer survivorship to crossing a river and starting a new life on the other bank--with no maps or trails to show the way. We hope that Facing Forward offers some useful signposts for your unique journey and helps you, in Mullan's words, "[civilize the new land] to make life there tolerable, and even good.