Revisiting cancer survivorship
I have written about this topic several times here on Journeying Beyond Breast Cancer, as I have become more and more aware of how many people dislike the term “survivorship”.
I use the term cancer survivor, not because I have any particular affinity with the label, but simply for lack of another suitable term. What should we call this phase for those of us for whom active cancer treatment has ended? No one has yet come up with an all-encompassing term to cover it, apart from “survivor”.
So, it was interesting to discover this question being asked by some cancer researchers in France. You are being asked to choose which of the following two sentences you would prefer:
I consider myself a survivor of cancer.
or
I can say about me that I am someone who has survived the test of cancer.
I am aware that my translation, particularly in the second sentence, may mean that some of the nuance has got lost in translation, so if you have a better translation, please do let me know. You will find the original article here.
Of course, both these sentences refer to the concept of survivorship again, so perhaps neither are sentences you would choose? Is there a better way of saying this? I will pass your comments onto the researchers if you would be so kind as to leave them below.
How would one describe someone who had, say, a heart attack a few years ago? Maybe as someone who had had a heart attack. No reference to the possibility of a different outcome . Just the facts
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Hi Deirdre, great to hear your point of view. Looking forward to passing it on to the researchers.
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Simple and straight to the point. I’m not a fan of survivor, although the first thing I wanted to know was if I’d survive! I heard some say they were a graduate of cancer, which appealed to the academic in me 🙂
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Oh that’s an interesting term 😉 thanks so much for your input Cara.
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I agree with Deirdre Mulvagh- keep to the facts…someone who “had cancer” and came out the other side or maybe “Lived through”… I think both terms “survivor” or “Graduate” seem to imply some sense of control over the illness, or achievement even, which really isn’t the fact of the matter. (-;
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Shape Shifting Emma – I am delighted to find your blog through your comments here – looking forward to following it in the future.
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I tend to just say that I was diagnosed with breast cancer. Just the facts, as Deirdre said. To me, using the word survivor seems to tempt fate and reminds me that my status could change from survivor to active patient at any time.
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That’s a very good point Nancy!
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As you know, I don’t care much for the cancer labels, including the survivor label. To me it diminishes those who don’t survive. I wouldn’t really pick either one of those choices, though if I had to, I’d pick the second one. I agree with the pink underbelly. I generally say I was diagnosed with cancer and I’m presently NED and leave it at that. Of course, I always have to explain what NED means, but that’s okay. I feel it’s more realistic.
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Thanks so much Nancy, my feeling is that neither of those two alternatives would be a preferred choice, though I may have gone slightly awry in my translation..
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I generally only ever say I had breast cancer (sometimes I tack on ‘twice’)
I’m to scared to say I’m a survivor … It’s come back once already who knows what the future will bring. People survive an earthquake or a bus crash!!
I fought cancer, and will fight again if I have to.
Maybe that’s a better word?
I’m a cancer fighter!
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Hi Nicole, thanks so much for stopping by.. I love your attitude!
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I often refer to myself simply as a patient (even though I’m in remission), although I also use the word survivor. I’ve thought a lot about the word over the years and even wrote a blog about it for work (http://www.side-out.org/blog/the-language-of-a-survivor/), but ultimately I believe it’s a personal choice. I don’t see too much of a linguistic difference between the 2 sentences in the French study.
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Hi Julie, thanks for sharing a link to your blog. I am looking forward to reading your thoughs on survivorship.
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“I survived the test of cancer” – yeah, my vote goes to the second option. It’s feels somehow more empowering. Plus, I really feel that cancer is a test from diagnosis onward, and each day conquered is a day that marks survival. Personally I feel that survival isn’t marked by treatment dates or NED or whatever . . . it’s a mindset, that’s all. So yes, my vote goes for the second. (And I’d be very glad to learn the results of this study, has it been completed?) ~Catherine
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Hi Catherine, I will certainly follow up on the results of this survey and report back. I love your comment about mindsets!
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I know the “survivor label” is falling out of favor, but I also know that “Somehow who has had cancer” or “been tested by cancer” or anything else with more than one word is not practical. I guess the reason “survivor” resonates with me is that I seem to hear it so differently from others – for me, if you’ve made it past the news of a diagnosis you’ve survived. Despite now having MBC, despite being back in treatment, when the subject comes up I still identify myself as a survivor. It doesn’t, by definition, put my cancer in the past, it doesn’t mean I’ve won or lost anything, and it isn’t, for me, tempting fate. It’s just a simple way to move forward in the real dialogue.
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Lori, I think you are right, sometimes we can get too hung up on labels, when the real diaglogue as you say is where we need to be moving towards. Great to hear your thoughts on this.
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We are all survivors until we’re not.
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Perfect!
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Mainelyhopeful…you’re my hero. I agree that we are all survivors..cancer or not….until we get voted off the island.
Lori, thanks for your great comment as well. With this one, there is not a “one size fits all” term as “survivor” means different things to different people.
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Thanks for sharing your thougths on this topic Savvy Sister. I love what you say that there is no one size fits all – I think that is something that is true of many aspects of this journey with cancer.
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Ah, Savvy Sister, thank you, you’ve made me laugh. I guess I’ve had too serious of a week with my cousin entering hospice with MBC. So building on last week’s beautiful picture and quote by Ram Dass “We’re all just walking each other home,” I guess I need some friends to SAIL me home when I get voted off this island.
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I simply say “I had cancer.” I prefer the past tense until proven otherwise. 😉
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Succint and to the point Renn – don’t think anyone could say it better than that – thanks for taking the time to comment x
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I think it was a friend of mine whose cancer has also metastasized who said “I survived chemo. I survived surgery. I survived radiation.”
I don’t use the term survivor for cancer in general. I would choose the 2nd option in the French survey if I could tweak the wording a bit. I don’t say “I had breast cancer in 2006”, I say, “I was diagnosed with breast cancer in 2006.”
I agree with the point Deirdre made.
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I love this conversation because the label thing is an issue for so many of us. I know we are getting hung up on words and that’s troubling but I **think** I get hung up on verbiage because the disease is so trivialized. Lori (regrounding) is probably the person with whom I’ve made the deepest connection since entering the SM world. She uses survivor and yet, I feel compelled to say, “breast cancer patient” ….. As long as I am still required to see different doctors for follow up visits… now only annually, but three different doctors…. I still feel like a patient. I will quickly follow that with, “I’m fine.” But it’s a way of raising awareness to those who don’t understand the reality of the disease. I want’ people to walk away with a sense of “Why did she say she was a patient and then say she is fine?” Until the majority know (and believe) the reality, I’ll be a “breast cancer patient who is fine.” We should hold a conference on words and come up with a good breast cancer vocabulary!
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I agree with Lori about the word survivor. I don’t want to offend people but even if one has MBC they are a survivor until they leave the island. I think the graduate word has some spark to it. We can get hung up on words but having survived an earthquake, I feel surviving breast cancer or chemo, or bilateral mastectomy, or recurrence is fine. The word NED is fine as long as those that are not NED are included in the clubhouse. Marie, you definitely got me thinking. Thanks for this thought provoking post!-Susan
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Thanks so much Susan for adding your voice to the discussion
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I find all these comments really interesting, having experienced non-hodgkins lymphoma 26 years ago, I’ve never really considered myself a ‘survivor’ of cancer. I suspect my thoughts are similar to pinkunderbelly on this one. However, I do use the tag ‘cancer survivor’ on my blog in the hope it will attract more visits…..but I’m not sure why.
I think if I’m brutally honest I’d have to consider myself ‘still surviving’ the whole experience.
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Welcome to this blog and thanks so much for sharing your perspective – it is always good to hear from new visitors
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I prefer “I’m in remission” a survivor assumes I won.
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Thanks Joanne for sharing your thoughts
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I think I prefer something these lines: I ran the race with cancer and so far, I’m in the lead.
Eileen at http://www.womaninthehat.com
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I have always had issues with the word survivor. I figure I’m a survivor of breast cancer when I am fortunate to die os something else-like being hit by a bus. Oh, well, at least she survived breast cancer. I seldom voice this it loud as non-cancer people look at me in horror. I also shocked my oncologist with this thought.
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