. "6 Cancer Survivorship." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
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information that the committee received from representatives of cancer survivorship groups and community organizations. The final section provides the committee's recommendations.
Review of Related Literature
Improved prevention and detection methods coupled with advances in medical treatment have resulted in increasing numbers of cancer survivors. Today, there are more than 8 million cancer survivors, and for 5 million of these survivors their cancers were diagnosed 5 or more years ago (Beyer, 1995). The term cancer survivor means different things to different people, from a minimum—a person who has been free of cancer for 5 or more years—to a maximum—anyone with a history of cancer—beginning at the point of diagnosis and continuing through the rest of life. The latter definition carries with it a range of experiences and interventions that include a variety of programs in patient education, peer support services, exercise modalities, counseling employment services, and long-term follow-up clinics (Johnson, 1995). For example, there is a growing body of discussion regarding the development of free-standing survivor clinics for children and adults (Hollen and Hobbie, 1995). In addition, late effects of multimodality treatments may result in organ compromise or new primary cancers for a growing population of long-term survivors of cancer (Konsler and Jones, 1993).
Cancer survivors often face a range of health-related, financial, social, and psychological needs and concerns that may affect treatment and that may even persist well after diagnosis. One study surveyed the current physical, psychological, and social functional status of a sample of breast cancer survivors 16 months to 32 years from their original surgery for breast cancer. The results revealed that length of survivorship is not necessarily associated with a diminishment of concerns about the cancer. Chronic physical problems, continued thoughts about recurrence, nervousness associated with medical follow-up, concerns regarding health insurance coverage, and other social concerns remain significant issues for many long-term survivors (Polinsky, 1994). In addition, pain due to cancer or its treatment can undermine rehabilitative efforts and detract from quality of life. Pain and pain relief, however, are often overlooked in breast cancer survivors (Newman et al., 1996).
The growing cancer survivorship movement explores the various levels of involvement that cancer patients may choose and provides resources to help individuals and their families improve their survival skills. As a result, many cancer patients are taking more active, assertive roles, demanding second opinions and treatment option information, and seeking