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Survivorship

Behavioral Research Center

What is the problem?

We know too little about the quality of life, health behaviors, and health care of cancer survivors.

Thanks to advances in detection and treatment, 11.1 million American survivors are alive today, and the numbers are growing. Celebrity cancer survivors such as Lance Armstrong and Suzanne Somers have increased awareness of cancer survivorship, but much remains to be learned about the issues faced by survivors. The Society can be more effective in addressing the health-related needs of cancer survivors if we better understand the issues they face. We know that the majority of people diagnosed with early-stage cancer can expect their overall health and functioning to return to normal not long after completion of treatment, although some will experience problems that persist over time. Survivors of certain cancer types or those diagnosed at a later stage are more likely to have impaired physical, psychological, or social functioning. In addition to fear of recurrence, survivors are at increased risk for new cancers. Survivors may have difficulty returning to former roles, such as those in the workplace or as parents, or finding health or life insurance. Although research has begun to document the issues faced by cancer survivors, many questions remain. What are the problems of cancer survivors, and how common are these issues? Do they vary by cancer type or stage at diagnosis? How long do problems persist? Do side effects unexpectedly emerge years after treatment, or do they persist from the point of treatment on?

What is the Behavioral Research Center doing about this problem?

“I think we survivors are never truly done. We just move from the quantifiable, treatable disease to the immeasurable uncertainty of survivorship.”
– Elizabeth McKinley, MD
Annals of Internal Medicine, September 2000

To improve our understanding of issues faced by survivors, the Behavioral Research Center is conducting the Study of Cancer Survivors-I (SCS-I). SCS-I has a number of features that overcome some limitations of previous survivorship research and provide important information about the quality of life of cancer survivors.

  • By drawing population-based samples from a number of geographically diverse state cancer registries (11), SCS-I provides us with estimates of quality of life that are probably similar to the general population of survivors.
  • By recruiting a large sample (5,901) of survivors diagnosed with 1 of 10 common cancers (prostate, female breast, lung, colorectal, bladder, non-Hodgkin lymphoma, skin melanoma, kidney, ovarian, and uterine), SCS-I allows us to compare survivors of different types of cancer and investigate issues specific to under-studied cancer types, such as lung and ovarian cancer.
  • By sampling a particularly large number of younger survivors (18-55 years of age), we are able to explore how younger survivors adjust to cancer compared with older survivors.
  • We are surveying the same group of survivors at 1, 2, 7, and 12 years after diagnosis – that is, this study is longitudinal – and this enables us to see patterns of changes in the quality of life of survivors over time.
“A common complaint of survivors is the apparent belief of those around them that, once the last treatment is over, the cancer is over.”
– Hester Hill Schnipper, LICSW

SCS-I is expected to add significantly to the scientific understanding of physical and psychosocial adjustment to cancer. The detailed information we are learning about cancer survivors from SCS-I can be used to design programs and other interventions to benefit cancer survivors through improved quality of life.