Defining survivorship

I have written a lot about the concept of cancer survivorship and it is a word that is used extensively in literature and elsewhere, so I thought it would be helpful to explore in more detail what exactly we mean mean by the term. Having spoken to many women with a history of breast cancer, I have learned that there are some who do not like the term survivorship, but for the purposes of this post, I will continue to use the term, although it may be interchanged with “living with cancer” if preferred.

 The dictionary defines survive as follows:

intransitive verb 1 : to remain alive or in existence : live on 2 : to continue to function or prosper

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

Natalie Doyle, Royal Marsden NHS Foundation Trust, has published a paper on “cancer survivorship: evolutionary concept analysis”* and she observes that 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.

Doyle states in her paper that “there has been little progress in the conceptulization of cancer survivorship, despite the signficant rise in the number of cancer survivors”. She believes that cancer is “a life-changing experience, with a duality of positive and negative aspects unique to the individual experience but with universality”.

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.

The National Coalition for Cancer Survivorship state that “a cancer survivor is anyone with a history of cancer from the time of diagnosis and for the remainder of life”. Similarly the Lance Armstrong Foundation define it as “from the time of diagnosis through the remaining years of life”.

The issue of survivorship encompasses physical, psycho-social and spiritual aspects and I will return to these in future posts. As more and more people live with cancer than die from it, it is an important discussion for us to continue.

What are your views on survivorship? What does it mean to you? When did you start to see yourself as a survivor? Share your stories here.

*  J Adv Nurs. 2008 May;62(4):499-509. Epub 2008 Mar 25

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