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Who Is a Cancer Survivor?
This simple question is surprisingly difficult to answer. It may have different answers in different contexts. There is no "official" definition that everyone agrees on. For a long time we thought of anyone who was cancer-free 5 years after treatment as being a survivor. That definition is now considered inadequate and narrow. Way back in 1986, the founders of the National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that would change the common parlance from cancer "victim" to cancer "survivor," envisioning an organization that would deal with the full spectrum of survivorship issues related to living with, through, and beyond a cancer diagnosis. NCCS' definition of a survivor, from the time of diagnosis and for the balance of life, has been widely adopted by the cancer community and beyond. NCCS has expanded its definition of survivor to include family, friends, and caregivers because when a person is diagnosed with cancer everyone around them is affected (the National Cancer Institute's estimate of 12 million cancer survivors in the United States only includes the person diagnosed with cancer).
The National Cancer Institute's Office of Cancer Survivorship has an almost identical definition, and they acknowledge that they adapted theirs from the NCCS definition: "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." The Institute of Medicine, in its major report on cancer survivorship a few of years ago, used the NCI definition. The American Cancer Society (ACS) does not appear to have a definition, but the language and materials they use imply that a survivor is someone who has completed primary treatment and has no active disease.
Survivorship programs in institutions need to define not so much "survivor" but the specific target population that they intend to serve. For example, the Connecticut Challenge Survivorship Clinic at Yale Cancer Center sees its target population as people who have recently completed primary treatment and who have no active disease. "Primary treatment" usually means surgery, radiation, and/or chemotherapy. Some patients remain on preventive treatments, such as hormones; these patients fall into the target population of the Survivorship Clinic.
For individuals who have had a cancer diagnosis, comfort with the term survivor varies. Survivorship for some is a state of mind, a part of their self-identity, rather than a point on a treatment calendar. Recently, a Survivorship Clinic participant said, "I see myself as a very healthy person. I just happen to have cancer." Some people with advanced cancer or who are in active treatment for cancer have a hard time applying the survivor label to themselves - they simply don't feel like a survivor. Some people experience survivor guilt, especially those who had a smooth and relatively easy treatment course, and believe they don't deserve the survivor label.
Try this as a practical definition: a cancer survivor is anyone who has had a cancer diagnosis and who is working to be as healthy as possible within the context of her/his current medical condition. The individual's state of mind and beliefs about their own survivorship make a difference.
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In the News
Connecticut Challenge
There is less than a month before the 5th Annual Connecticut Challenge bicycle ride on Saturday, July 25th. The ride will raise money for cancer education, research, and survivor care at Yale Cancer Center, the HEROS pediatric survivorship clinic at Yale-New Haven Hospital, and other survivorship programs in Connecticut.
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Sunshine House
Sunshine House, a place for medical and respite care for children with life-limiting illnesses and bereavement care for their families, has received additional legislative support from the Connecticut General Assembly.
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Sunshine House will be built on former farmland in Madison.
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Recently Approved
Injectable ibuprofen approved for hospital use.
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New analgesic approved: tapentadol, trade name Nucynta.
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Book Suggestions
Two books from the Oncology Nursing Society on cancer and sexuality, one for patients, one for professionals:
Woman Cancer Sex
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Breaking the Silence on Cancer and Sexuality: A Handbook for Healthcare Providers
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Lance Armstrong Foundation
The Lance Armstrong Foundation web site for Spanish-speaking survivors (LIVESTRONGespanol) has been completely revised.
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New Physician Specialty Code for Hospice and Palliative Care.
The Centers for Medicare & Medicaid Services (CMS) has established a new physician specialty code for Hospice and Palliative Care. The new physician specialty code will be 17 and goes into effect October 1, 2009.
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SAMHSA and FDA
The SAMHSA and FDA join to educate the public on the safe use of Methadone.
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Journal Watch
Seow H, et al. Developing quality indicators for cancer end-of-life care: proceedings from a national symposium. Cancer. 2009 Jun 9. [Epub ahead of print]
McInnes DK, et al. Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors. Cancer. 2008 Sep 15;113(6):1471-1479.
Turner MK, et al. Prevalence and clinical correlates of vitamin D inadequacy among patients with chronic pain. Pain Medicine. 2008 Nov;9(8):979-84. Epub 2008 Mar 11.
Goodyear-Smith F, Halliwell J. Anticonvulsants for neuropathic pain: gaps in the evidence. Clin J Pain. 2009 Jul-Aug;25(6):528-36.
Saif MW. Management of hypomagnesemia in cancer patients receiving chemotherapy. J Support Oncol. 2008 May-Jun;6(5):243-8.
Bender CM, et al. What do perceived cognitive problems reflect? J Support Oncol. 2008 May-Jun;6(5):238-42.
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