Now almost a year from my bone marrow transplant I feel the need to vent about the fact that we call people who have been given a diagnosis of cancer, survivors.  I was never that comfortable with the term before and am now even less so.  I think the term probably came from the days when a diagnosis of cancer was an immediate death sentence.  Having escaped that fate, much like getting through a hurricane or tsunami, meant that you were a survivor.

Survivor implies that you have vanquished cancer when most of us live with the knowledge that it could come back at any time. Now, with many of us living for years with recurrences or metastatic disease and others being “overdiagnosed” with diseases that may never have gone on to become life threatening (see blog http://blog.dslrf.org/?p=1584) the term survivor feels misplaced.  We don’t use the word survivor for people with heart disease or talk about rheumatoid arthritis survivors.  They are acknowledged to have chronic diseases that have lifelong consequences, periodically require treatments, and may ultimately be the cause of their deaths.  Cancer is also often a chronic disease with collateral damage from the treatments, a continual risk of recurrence and the likelihood of a shortened life span.  We should acknowledge that and be comfortable saying “she has cancer” rather than “she won her battle with cancer.”  (I never liked the war metaphor anyway.)

This would change the conversation regarding “survivorship,” a euphemism for dealing with the consequences of treatment and the continual fear of recurrence.  We would stop looking at women with advanced disease and wondering what they did wrong, as if the outcomes were totally under their control.  We could start to realize that just as with heart disease and arthritis, advocacy needs to be aimed at prevention and finding the cause rather than detection.  The original goal may have been increasing the number of survivors when the majority of people died of the disease shortly after being diagnosed.  Now, not only should the label change but the goal has to change with it: to go beyond the cure to finding the cause.

I am not a survivor; I am a woman living with cancer.  It may be dormant for now, but there is always a possibility that it will reemerge and I have to live with that knowledge along with the consequences of my treatment.  I will probably eventually die of something related to this diagnosis. This defines my reality and I can live with it!

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58 Responses to Don’t Call Me a Survivor

  1. Jeanne says:

    Yes, there is the chance it might come back. But there is a chance for anyone to get cancer.
    I prefer the term “warrior” myself.

  2. Caroline says:

    I am not a survivor. I am someone who is living with cancer as well. I have always disliked the word. If I was a survivor, I feel I would not have been a person for the last 32 years.

  3. In my mind, “Surviving” as a long term description evokes an anemic, diminished state. Cancer is one of many possible turning points in the health and life of a person. All of these turning points offer the potential for learning, growth and embodying one’s life purpose more fully. Death describes only a single moment, while all the rest is life. I survived a brush with death. It gave me the opportunity to live from a different perspective, one that not everyone gets the chance to live from. I move from surviving to thriving, knowing my time – like everyone’s – is limited and precious.

  4. Nancy Douglas says:

    Thank you for starting this conversation. I don’t like the term ‘survivor’ either. Since my stage 1 diagnosis in 2008 I have refused to claim that word or ‘chronic condition’. I also don’t ever say ‘I have cancer’. I am very lucky to no longer have cancer. I had a disease and I was very lucky to have treatment and I am now cancer free. It is only other people who bring up my cancer in conversation or send me emails with a prayer for ‘the disease that will pop up again when you least expect it’.
    I know there is a chance for metastasis-but I don’t want the cancer name tag. After you have done all you can, positive thought is necessary. I would rather be totally surprised with a recurrence than to have been expecting one all along.
    Thanks for all you’re doing Dr. Love.

  5. Jonathan says:

    A good discussion indeed and one much needed.

    I think the applied term is a personal one, and it is neither right nor wrong if someone likes to call him or herself a survivor, a thrive-r, a warrior, a living-with, NED, or anything else. But I do agree that “survivor” is misappropriated in many cases, such as those who go from early stage to metastatic, or those suffering collateral damage from prior treatments (my mom is one who had BC 18 years ago but developed bladder cancer 10 years later from her Cytoxan treatments, which she fought for 4 years and is now, thankfully, in remission for the last 4 years).

    I think the science is clear that many women are effectively “cured” of their breast cancer, in that that 8 out of 10 women with negative nodes never suffer recurrence. But with no personal guarantees, treatment consequences, and just the KNOWLEDGE that cancer does not have a surefire cure, it all reinforces the point that the best solution is to never get it in the first place…..which means it’s got to be prevented….which means the cause(s) need to be discovered.

  6. Julie says:

    I too had AML, and when I relapsed, I had a stem cell transplant. A few years later, I developed melanoma in situ, most likely an effect from the transplant treatment. I’ve learned over the years that “survivor” is a charged word in the cancer community, and I even wrote a post about it (http://www.side-out.org/blog/the-language-of-a-survivor/), but I still use it. I understand your argument against it, but language is so personal. If using “survivor” helps someone to feel strong and resilient, then it’s helpful to them.

    I’m so glad you are doing well and I’m grateful for all the work you do for breast cancer patients.

    Thank you!
    Julie

  7. Christine says:

    When I came across your commentary, I was surprised and smiled. I have always found the word “survivor” to be well-intended yet misplaced nonsense. I also cringe at the war metaphors–as in “My father died after a long battle with cancer.” (He had a disease, and it eventually killed him. He did not do battle with cancer.) I have not, to date, been diagnosed with breast cancer, but I have had six biopsies and one lumpectomy (for a “giant fibroadenoma” way back at age 21). Just yesterday I had a so-called comprehensive 3D mammogram and ultrasound. Since age 31 (over 30 years ago), I have gone to the same radiology place for mammograms, ultrasounds, and MRIs (and two needle biopsies). And every single time I am treated with raised eyebrows and “Oh my!,” “Oh my gosh!,” or something similar by the x-ray technician reviewing my paperwork. They treat me like I am on my death bed. I cannot imagine how cancer patients are treated by these technicians. It is not a positive environment at all.

  8. Christine says:

    Forgot to mention something important: I greatly appreciate Dr. Love’s level-headed, easy-to-understand advice. I first came across a book of hers back in the 1990s in a bookstore. I remember reading that she did not favor the monthly search-and-destroy self-exams being pushed with near hysteria by women’s groups and the news media. And what do you know? The actual benefits of those mandatory fastidious monthly self-exams were dispelled years later. I value Dr. Love’s advice and commentaries very much.

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