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Chapter 20

### CANCER SURVIVORSHIP IN THE UNITED STATES

According to the National Cancer Institute (NCI), a cancer survivor is "one who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. A person who has been diagnosed with cancer is considered to be a survivor from diagnosis until the end of life."1 The President's Cancer Panel 2003–2004 Annual Report2 entitled "Living beyond Cancer: Finding a New Balance" defined the term "survivor" as any person who has ever been diagnosed with cancer. There are those, however, who believe that a cancer survivor is someone who is "cancer-free" 5 years after his or her diagnosis of cancer, and others who reject the "label" of being a "cancer survivor" altogether.3 At the University of Texas MD Anderson Cancer Center (MDACC), we follow the NCI definition of a cancer survivor and consider a cancer survivor to be a person who has ever been diagnosed with cancer.

Advances in cancer diagnosis and treatment have increased the number of cancer survivors who live for long periods of time.1 In 2005, there were about 11 million cancer survivors living in the United States. Approximately 23% of these survivors had been diagnosed with breast cancer, 19% with prostate cancer, and 11% with colorectal cancer. Approximately 5% of these 11 million cancer survivors were longer-term survivors that had been diagnosed at least 29 years earlier. According to the 2007 NCI's Cancer Trends Progress Report, the total economic burden of cancer in the United States in 2004 was estimated at $190 billion. Direct medical expenditures, which included cancer screening and treatment, accounted for about$90 billion of the estimated $190 billion total economic burden of cancer. The$100 billion difference included indirect costs such as losses in time and economic productivity resulting from cancer-related illness and death.

The magnitude of the qualitative burden of cancer survivorship, however, has been much more difficult to elucidate.4 Surveys of survivors that explore the psychosocial impact of cancer diagnosis and treatment, such as the Internet survey reported by the Lance Armstrong Foundation (LAF) in 2004, have been limited by selection bias and the underrepresentation of minority and/or underserved populations.5,6 The City of Hope Beckman Research Institute quality of life (QOL) model applied to cancer survivors has four domains: physical well-being and symptoms, psychological well-being, social well-being, and spiritual well-being.7 The items in psychological well-being domain of this model include control, anxiety, depression, enjoyment/leisure, pain, distress, happiness, fear of recurrence, cognition/attention, overall perception of QOL, and distress of diagnosis and treatment. The social well-being domain includes the following items: family distress, roles and relationships, affections/sexual function, appearance, isolation, employment, and finances. Given the depth and breadth of the items in these domains, it is not surprising that addressing the psychosocial needs of cancer survivors involves a multidisciplinary approach and a diversity of services to meet these needs.8

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