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From Cancer Patient to Cancer Survivor: Lost in Transition
Live with intermittent periods of active disease
Live with persistent disease
Live after expected death
This new focus on both the short- and long-term consequences of cancer represented a radical departure from earlier conceptualizations of survivorship. These consequences include changes in self-concepts and personal horizons, modifications in social relationships, and considerations of costs of treatment and follow-up.
NCI established an Office of Cancer Survivorship in 1996. The Office of Cancer Survivorship adopted the NCCS definition of a cancer survivor (NCI, 2004b):
An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.
While adopting this broad definition, the Office of Cancer Survivorship decided to focus its research on the post-acute diagnosis and treatment phase of cancer care.
Cancer Survivorship research encompasses the physical, psychosocial, and economic sequelae of cancer diagnosis and its treatment among both pediatric and adult survivors of cancer. It also includes within its domain, issues related to health care delivery, access, and follow up care, as they relate to survivors. Survivorship research focuses on the health and life of a person with a history of cancer beyond the acute diagnosis and treatment phase. It seeks to both prevent and control adverse cancer diagnosis and treatment-related outcomes such as late effects of treatment, second cancers, and poor quality of life, to provide a knowledge base regarding optimal follow-up care and surveillance of cancers, and to optimize health after cancer treatment (NCI, 2004b).
Even if survivorship is defined to begin with the post-treatment period, advances in treatment have obscured when this phase of care begins (Marcus, 2004). Although some have considered cancer survivors to be those who have completed the traditional treatments for cancer—radiation, chemotherapy, or surgery—adjuvant care and treatments such as tamoxifen may now be given to patients for years.
Further complicating the definition of survivors are the consequences of cancer screening. Among those counted as “survivors” are people treated for cancers that would never have come to light clinically, but were diagnosed after a positive screening test (so-called “latent disease”). Men with early-stage prostate cancer diagnosed following prostate-specific antigen (PSA) screening are probably the largest and fastest growing such group