After cancer treatment, many survivors want to find ways to reduce the chances of their After Chemotherapy” online at cancercare/pdf/fact_sheets/.
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b A Note About Cancer Survivors There are millions of people in the U.S. today who are cancer survivors. Three out of every four American families will have at least one family member diagnosed with cancer. To help support survivors™ unique needs, the National Cancer Institute (NCI) formed the Of˜ce of Cancer Survivorship (OCS) in 1996. The of˜ce is dedicated to enhancing the length and quality of life of people with cancer. OCS also promotes research that looks at the long- and short-term effects of cancer and its treatment. For more information about survivorship issues and OCS, visit online at http://cancercontrol.cancer.gov/ocs/ .Acknowledgments We would like to offer a sincere thank you to the extraordinary survivors who contributed to the development and review of this booklet.NCI extends a special thanks to the following researchers for their pivotal work in the area of cancer survivorship under NCI Grant No. CA63018. Facing Forward was adapted from materials used in the study, Moving Beyond Cancer. Patricia A. Ganz, M.D., Professor, UCLA Schools of Medicine and Public Health and Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center, Los Angeles, CA Beth Leedham, Ph.D., Clinical Psychologist, private practice, Encino, CA Beth E. Meyerowitz, Ph.D., Professor, Department of Psychology, University of Southern California, Los Angeles, CAThis booklet is also available in Spanish (visit www.cancer.gov or call 1-800-4-CANCER). Este folleto también se puede obtener en español.
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Now that treatment is over – Many cancer survivors have told us that while they felt they had lots of information and support during their illness, once treatment stopped, they entered a whole new worldŠ one ˜lled with new questions. This booklet was written to share common feelings and reactions that many people just like you have had after treatment ended. It also offers some practical tips to help you through this time. Use this booklet in whatever way works best for you. You can read it from beginning to end. Or you can just refer to the section you need. This booklet shares what we have learned from other survivors about life after cancer: practical ways of dealing with common problems and guidelines for managing your physical, social, and emotional health. When possible, we include speci˜c information from research with cancer survivors. While cancer is a major event for all who are diagnosed, it brings with it the chance for growth. As hard as treatment can be, many cancer survivors have told us that the experience led them to make important changes in their lives. Many say they now take time to appreciate each new day. They also have learned how to take better care of themselves and value how others care for them. Others draw from their experience to become advocates to improve cancer research, treatment, and care. We hope that this booklet will serve as a resource and inspiration to you as you face forward to your life after cancer. For ease of reading, rather than listing the many professionals that you may see as part of your medical care, you™ll ˜nd the term fidoctorfl used in the booklet to describe all medical interactions. Who is a survivor? This booklet uses the term ficancer survivorfl to include anyone who has been diagnosed with cancer, from the time of diagnosis through the rest of his or her life. Family members, friends, and caregivers are also part of the survivorship experience. You may not like the word, or you may feel that it does not apply to you, but the word fisurvivorfl helps many people think about embracing their lives beyond their illness.
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Table of Contents Congratulations on Finishing Your Cancer Treatment .. 1 What Is fiNormalfl After Treatment? .. 1 Getting Follow-up Medical Care 2 What Is Follow-up Care? .. 3 Which Doctor Should I See Now? How Often? 5 A Survivor™s Wellness Plan .. 5 Talking With Your Doctor 7 Questions About Your Follow-up Plan 10 Guidelines for Follow-up Care 11 Ways To Manage Physical Changes 15 Fatigue . 16 Memory and Concentration Changes 18 Pain 20 Nervous System Changes (Neuropathy) 23 Lymphedema or Swelling .. 24 Mouth or Teeth Problems . 26 Changes in Weight and Eating Habits 28 Trouble Swallowing .. 29 Bladder or Bowel Control Problems . 29 Menopause Symptoms 30 Body Changes and Intimacy .. 32 Your Feelings 37 Social and Work Relationships 49 Re˜ection 55 Appendix . 56 Financial and Legal Matters . 56 Resources 57 Learning To Relax .. 60
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2Getting Follow-up Medical Care All cancer survivors should have follow-up care. Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes, and important decisions. Some common questions you may have are: Should I tell the doctor about symptoms that worry me? Which doctors should I see after treatment? How often should I see my doctor? What tests do I need? What can be done to relieve pain, fatigue, or other problems after treatment? How long will it take for me to recover and feel more like myself? Is there anything I can or should be doing to keep cancer from coming back? Will I have trouble with health insurance? Are there any support groups I can go to?Coping with these issues can be a challenge. Yet many say that getting involved in decisions about their medical care and lifestyle was a good way for them to regain some of the control they felt they lost during cancer treatment. Research has shown that people who feel more in control feel and function better than those who do not. Being an active partner with your doctor and getting help from other members of your health care team is the ˜rst step.If you don™t have health insurance, Medicare, or Medicaid, you may feel that some of the information in this booklet won™t be helpful to you. You may have already struggled just to get treated and now see follow-up care as another battle. It can be hard to get care if you don™t have good medical coverage, but you must make sure you continue to get the care you needŠespecially now that treatment is over. There may be resources in your community to help you get these services. Talk with your doctor, social worker, or the business of˜ce at your local hospital or clinic. There are also organizations listed in the Resources section on page 57 that may be able to help you with health care costs.
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3What Is Follow-up Care? Once you have ˜nished your cancer treatment, you should receive a follow-up cancer care plan. Follow-up care means seeing a doctor for regular medical checkups. Your follow-up care plan depends on the type of cancer and type of treatment you had, along with your overall health. It is usually different for each person who has been treated for cancer. In general, survivors usually return to the doctor every 3 to 4 months during the ˜rst 2 to 3 years after treatment, and once or twice a year after that. At these visits, your doctor will look for side effects from treatment and check if your cancer has returned (recurred) or spread (metastasized) to another part of your body. At these visits, your doctor will: Review your medical history Give you a physical examYour doctor may run follow-up tests such as: Blood tests MRI or CT scans. These scans take detailed pictures of areas inside the body at different angles. Endoscopy (en-DOSS-koh-pee). This test uses a thin, lighted tube to examine the inside of the body. At your ˜rst follow-up visit, talk with your doctor about your follow-up care plan.See page 11 for a list of organizations and programs that give follow-up care guidelines for survivors or Resources on page 57 for a detailed list of cancer- related organizations.Follow-up care can also include home care, occupational or vocational therapy, pain management, physical therapy, and support groups. (See pages 12Œ13 for a description of these services.) Follow-up Medical Care
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4 Medical Records and Follow-up Care Be sure to ask your oncologist for a written summary of your treatment. In the summary, he or she can suggest what aspects of your health need to be followed. Then, share this summary with any new doctors you see, especially your primary care doctor, as you discuss your follow-up care plan. Many people keep their medical records in a binder or folder and refer to them as they see new doctors. This keeps key facts about your cancer treatment in the same place. Other kinds of health information you should keep include: The date you were diagnosed The type of cancer you were treated for Pathology report(s) that describe the type and stage of cancer Places and dates of speci˜c treatment, such as: Ł Details of all surgeries Ł Sites and total amounts of radiation therapy Ł Names and doses of chemotherapy and all other drugs Ł Key lab reports, x-ray reports, CT scans, and MRI reports List of signs to watch for and possible long-term effects of treatment Contact information for all health professionals involved in your treatment and follow-up care Any problems that occurred during or after treatment Information about supportive care you received (such as special medicines, emotional support, and nutritional supplements) Be sure to give any new doctors that you see a copy of your treatment summary or medical records.
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5 Which Doctor Should I See Now? How Often? You will need to decide which doctor will provide your follow-up cancer care and which one(s) you will see for other medical care. For follow-up cancer care, this may be the same doctor who provided your cancer treatment. For regular medical care, you may decide to see your main provider, such as a family doctor. For speci˜c concerns, you may want to see a specialist. This is a topic you can discuss with your doctors. They can help you decide how to make transitions in care. Depending on where you live, it may make more sense to get follow-up cancer care from your family doctor, rather than your oncologist. It™s important to note that some insurance plans pay for follow-up care only with certain doctors and for a set number of visits. In coming up with your schedule, you may want to check your health insurance plan to see what follow-up care it allows. No matter what your health coverage situation is, try to ˜nd doctors you feel comfortable with. Always tell any new doctors you see about your history of cancer. The type of cancer you had and your treatment can affect decisions about your care in the future. They may not know about your cancer unless you tell them. A Survivor™s Wellness Plan After cancer treatment, many survivors want to ˜nd ways to reduce the chances of their cancer coming back. Some worry that the way they eat, the stress in their lives, or their exposure to chemicals may put them at risk. Cancer survivors ˜nd that this is a time when they take a good look at how they take care of themselves. This is an important start to living a healthy life. When you meet with your doctor about follow-up care, you should also ask about developing a wellness plan that includes ways you can take care of your physical, emotional, social, and spiritual needs. If you ˜nd that it™s hard to talk with your doctor about these issues, it may be helpful to know that the more you do it, the easier it becomes. And your doctor may suggest other members of the health care team for you to talk with, such as a social worker, clergy member, or nurse. For tips on talking with your doctor, see pages 7Œ9.
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