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)
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
A very impressive post.
Thank you for highlighting this important phase of the cancer journey. I found it very traumatic when I finished my treatment – I felt lost and confused. Discovering your blog and your community of survivors made all the difference for me.
I feel very strongly that the aftermath of treatment is as difficult if not more so than the treatment itself, so thank you for shining a light on this in your excellent post.
As you pointed out in a previous post and I agree so much with the findings from the Institute of Medicine and the National Research Council of the National Academies that not enough is being done for cancer survivors as they transition out of acute cancer treatment.An important recommendation from this report is to make survivorship a distinct phase of cancer treatment with a dedicated plan for this phase. We need more advocates to rally to this cause.
As a cancer survivor I fully endorse this post. Cancer survivors need assistance navigating the complex issues they face after treatment.
I believe that patients have enough energy to get through the initial treatment, but then after that they run out of steam and face a whole host of new problems in the post-cancer treatment phase. Wouldn’t you agree?
In my opinion the lack of clear evidence for what constitutes best practices in caring for patients with a history of cancer is part of the problem. We need more research in this area.
Thanks for alerting me to those other great blogs – I’ve been reading through them and learning lots. I am in awe of cancer survivors and advocates such as these women
Your blog and others like those you have mentioned above have been a big help to me in making my transition from cancer treatment to “normal”. I have learnt so much and feel so supported – it has made all the difference to my experience.
As always, today’s entry hits the spot. There is so much more to having cancer than surgery, drugs and treatment. Often unless you’ve lived the journey, first hand, it’s forgotten or perhaps, not faced. I remember when I first went back to work my MD saying ‘so you’re all done now. Cancer’s over’.
You’ve also endorsed why I’ve given up a paid job to put a 3-day event on in London next year for people affected by breast cancer with workshops, seminars, support groups, therapists etc. Nearly at the point of announcing it and would love your readers to come along too.
What a great post!
This is a great post, Marie, and as you know one of my favorite topics!!
My concept of survivorship has changed remarkably. From a professional/medical perspective: the science of ‘survivorship’ is a fast=growing and fascinating area….to the point that every major cancer center in the US now has active survivorship programs and conference.
One major take-away for those finishing treatment: do not pass go without a survivorship plan in place. How you eat, exercise, manage stress, etc. are essential for your continued health and remission.
Personally, when I was first diagnosed I had a great dislike for the term ‘survivor’ because I’m essentially greedy: I wanted more in life than to ‘just survive.’ I wanted to dance, sing and embrace life and for some time I did not equate the two. It occurs to me, Marie, that some of my thinking was indeed influenced by my study of history and the term ‘Holocaust survivor.’
I credit the Lance Armstrong Foundation and Livestrong movement with turning my thinking around. Their manifesto is a document I urge every survivor to read, with its emphasis on knowledge, empowerment and unity.
Together, we can all accomplish great things for the community of cancer survivors.
Thanks so much for kicking off a great conversation,
I really welcome this post and I love Jody’s “do not pass go without a survivorship plan in place.” How true!
Great post Marie. I love the quote you included from Julia Rowland, “Being disease-free does not mean being free of your disease”. I think this statement really points out the, at times, large gap between the physical aspects of cancer diagnosis and treatment and the psychological/emotional aspects. As our friend Luann mentioned in one of her recent posts, if I had known at the beginning of this journey all the things I would have to go through it would have been even harder to move forward. But knowledge can be powerful and being made aware that survivorship can have it’s own set of issues to deal with can help people prepare to take the best possible care of themselves and become their own best advocate.
Thanks for sharing and thanks for the mention:)
What an insightful blog yet again. Having studied history I see where the connection with the Holocaust survivors comes from but I agree with Jody: read or listen to the Manifesto of the Lance Armstrong Foundation-LiveSTRONG and ot me that defines survivorship (I’m of course still one of the lucky ones not to have had cancer). One thing I do have to tell you though: you mention Jody, Rebecca and Debbie as amazing cancer advocates (and they are) but your blog is right up there with them. Thank you or teaching me again. Love, Annemieke
I’d never heard Julia Rowland’s “Being disease-free does not mean being free of your disease”. That statement cuts to the heart of what it means to have cancer. We are forever tethered to the mere thought of one stray cancer cell waiting to strike again with vengeance.
Even the best of doctors, on any given day, don’t arm us with survivorship skills. It shouldn’t be surprising since their job is killing cancer, not helping us survive. WE are helping us survive, the women who comment on your blog. Together, we are authors of the game plan and are doing everything we can to empower as many survivors and previvors as we can.
I so value the words of you and the other authors who visit your site.
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