Defining cancer survivorship

When does someone with cancer start to become a survivor? Some believe it begins at the moment of a diagnosis of cancer; for others the notion dawns on them more gradually as they progress through their treatment. There are some who believe you must have reached or be approaching the “magic” five years in remission before you can start to consider yourself a survivor.

Historically the concept of survival has been associated with war, such as Holocaust survivors or with survivors of natural disasters. The term survivorship first appears in the medical literature in the 1960s with reference to life after myocardial infarction.

By the 1980s, the concept of survivorship had begun to appear in cancer-related literature, not just in the physical sense of not dying, but also related to the psycho-social perspective.  When Fitzhugh Mullan, a medical doctor diagnosed with anaplastic seminoma published  Seasons of survival: reflections of a physician with cancer* the concept of how the experience of cancer might affect someone holistically and evolve over time is first presented.  From that point on, the concept is expanded in literature and in autobiographical works of cancer survivors themselves.

The transformation of the definition goes back to 1986, when the National Coalition for Cancer Survivorship challenged the medical definition of a cancer survivor, which at that time held that only someone who had remained disease-free for five years could be called a survivor. They determined that “a cancer survivor is anyone with a history of cancer from the time of diagnosis and for the remainder of life”.

The issue of cancer survivorship encompasses physical, psycho-social and spiritual aspects at all stages – diagnosis, treatment, and beyond. It is important that right from the day of diagnosis your treatment takes account of not just your physical well-being, but also your emotional, social and financial health. Traditionally cancer management was thought of in terms of prevention, early detection, treatment, then remission and or/end of life issues. This is now evolving to encompass a realisation that there is a range of needs and experiences that people have after the completion of cancer treatment. As Julia Rowland, director of the National Cancer Institute’s Office of Cancer Survivorship, says: “Being disease-free does not mean being free of your disease”.

If this whole-person approach were to be adapted right from the outset, perhaps making the transition from active treatment to post-treatment might not be so difficult.  Currently, patients are falling into a void where little or no information or support exists for them. The little knowledge or support they do find is coming from other cancer survivors, particularly in online settings. There are many high profile cancer websites, but also check out sites such as Breast Cancer Sisterhood , Women with Cancer and Debbie’s Life is Bigger Than Cancer . Written by cancer survivors, these sites provide excellent peer to peer support and knowledge.  Cancer survivors such as Jody Schoger and Rebecca Esparza impress me with their passion and dedication to improving cancer services for all. These women are leading the way in championing the cause of survivorship and through their action and others like them we will surely move the needs of survivors forward to a point where our needs are heard and addressed.

* New England Journal of Medicine,1985, ( 313, 270–273, Jul)

Related Posts:

The Breast Cancer M.A.P. Project

You’ve survived cancer. ‘Now What?’

The loneliness of the long-distance cancer survivor

Managing the stress of survivorship

The story doesn’t end here…