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From Cancer Patient to Cancer Survivor: Lost in Transition
Lack of Awareness of the Late Effects of Cancer and Its Treatment
A prerequisite to obtaining appropriate cancer follow-up care is an awareness of one’s increased risk and knowledge of what should be done to reduce risk or ameliorate adverse outcomes. Late effects that are known to be associated with cancer treatments may be discussed in the context of making treatment decisions and obtaining informed consent. Given the stressful nature of this phase of care, cancer patients may have difficulty retaining the information. Patients do not routinely receive a summary of their treatments or possible late effects. Cancer survivors are beginning to be informed about what to expect after treatment through the efforts of patient advocacy organizations. For example, the American Cancer Society (ACS) has provided information on “What Happens After Treatment” for most cancer types (ACS, 2005a) and the Lance Armstrong Foundation has provided a guide to help survivors summarize their medical treatment and plan for follow-up care (LAF, 2004a). A few studies have assessed adult cancer survivors’ awareness of their increased risk and need for follow-up:
Female adult survivors of Hodgkin’s disease treated at a young age with mantle irradiation are at high risk for subsequent cancer, but only 47 percent reported having had a mammogram in the past 2 years (Diller et al., 2002). As many as 40 percent of women were unaware of their increased risk.
Breast cancer survivors report knowing little about lymphedema before developing it, and physicians report not routinely counseling women or providing written information on lymphedema prevention to their patients with breast cancer (Paskett and Stark, 2000).
Only about half of men and women with cancer who are of childbearing age receive timely information from their health care providers about their risk of infertility and options to preserve or restore fertility (Canada and Schover, 2005).
Breast cancer survivors often do not recall discussing the reproductive health impact of their treatment, and many report that their concerns are not adequately addressed (Partridge et al., 2004; Duffy et al., 2005).
Relatively few (22 percent) survivors of colorectal cancer could identify risk indicators for recurrence, but most (64 percent) agreed that they would like to be told what to look for (Papagrigoriadis and Heyman, 2003).
More is known about the awareness of late effects among survivors of childhood cancer. As part of the Childhood Cancer Survivorship Study (CCSS), members of a large cohort of 5-year childhood cancer survivors have been surveyed to learn more about their health status, health care