I don't like to be called survivor

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muska
muska Member Posts: 1,195

Survivor usually means someone who did not die in an event where everybody else or the majority did. I don't think most of us who were diagnosed with BC before we got any symptoms fall under this definition. I was perfectly fine when I was diagnosed. Yes, I had to go through long and unpleasant treatments but these treatments do not usually lead to immediate death, so I don't perceive myself as a survivor of any special circumstances. Actually, I think "survivor" in the true sense of this word is applicable to 2-3% who survive stage IV BC. Expanding the definition, I would apply it to stage IV ladies but I don't see why those of us who are still early stage would call ourselves survivors.

Please don't take offense - these are just my personal thoughts. As we age, we all get conditions that can lead to death sooner or later. Do we call people diagnosed with diabetes survivors? Do we call everybody who had a heart attack a survivor? As breast cancer treatments are now somewhat similar to managing other chronic conditions why would we call every woman with breast cancer a survivor?


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  • tgtg
    tgtg Member Posts: 266
    edited May 2015

    Muska, you have articulated something that has bugged me all along regarding cancer nomenclature--perhaps because my lifelong occupation has been tied into the use of the English language.

    I never use the term myself, and correct anyone who applies it to me for the very reasons you give. I just politely say that I had a cancerous tumor removed and the surrounding area treated with radiation and that I am no more a "survivor" of breast cancer than I would be a "survivor" of appendicitis if an infected ruptured appendix had been removed and the adjacent area treated with antibiotics to eliminate any residual infection.

    While those with stage IV endure much and undergo some very unpleasant treatments (and I admire their fortitude and desire to overcome the cancer), the fact remains that not one of us will survive life in the long (or short) run. A friend of mine (whose wife died of stage IV mets just 10 months ago) understood this fact of life and living, and he always maintained (and still maintains), "The single biggest risk factor for dying is being born!" So I,like you, prefer to use the term to say that eight passengers did not survive the recent horrible Amtrak derailment but that more than a hundred did survive it, albeit many suffered grave injuries, and that no one on board survived the apparently deliberate airplane crash.into the French Alps two months ago. .

  • blondiex46
    blondiex46 Member Posts: 5,712
    edited May 2015
  • debiann
    debiann Member Posts: 1,200
    edited May 2015

    I miraculously survived a lot of stupid teenage decisions. I survived a nasty divorce from a man who truly wanted to do me harm. I survived chemo and multiple surgeries, but I have no way of knowing if I will survive cancer or if it will ultimately take me out, so yes, I have trouble with the "survivor" label. 

    When describing individuals with disabilities we are taught that it is correct to put the person first, the condition second, because they are people who have a condition. The condition doesn't define who they are.  For example "He is a man with autism" not "He is an autistic man". I think the same logic could apply here. I am a woman in treatment for BC or a woman who has completed treatment. 

    I also get tired of being asked if they "got all the cancer" because as we all know, only time will tell. I ran into an old acquaintance at a child's birthday party today and with genuine care and concern he did ask that question. I gave my standard "I hope so" which is of course the answer he wanted to hear. I later wondered what would his reaction have been if I were stage IV and said "no, they found cancer in various parts of my body." Talk about an awkward moment. Some questions just shouldn't be asked.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited May 2015

    when I am through with my treatment mastectomy and reconstruction and finally be cancer free I will proudly call myself a survivor! I do understand your points of view but the to me I was diagnosed at 29 with a 1 and 5 year old I am going through chemo that's kicking my butt I am having adverse reactions to the taxotere that will possibly have me hospitalized for my last 3 treatments but I will do whatever it takes to be a survivor!!

  • intothewoods
    intothewoods Member Posts: 449
    edited May 2015

    Count me in. I don't like it. Each day that any of us wakes up we are survivors. So stupid.

  • kittysister
    kittysister Member Posts: 212
    edited June 2015

    No, I don't like the term, either .. I'm not sure yet if I am one.

  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited June 2015

    If we are above ground we are still surviving! Anyone who comes through any medical condition - or lives with one - is surviving. It is nonsense for those who have had BC to think of themselves as being different from others - we have just had or maybe still have an unpleasant disease. That's all there is to it.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited June 2015

    I agree. Anyone alive is a survivor. In my case, so far! I've survived a stroke, osteomyelitis, a car accident, and, oh yes, breast cancer.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2015

    When I have to say something, I say "I was diagnosed with and treated for BC in 2007" and when they say, "Oh, you are a survivor" or "But you are okay now"; I say "So far, so good" and knock on the nearest piece of wood.

  • muska
    muska Member Posts: 1,195
    edited June 2015

    Ruthbru, I do exactly the same thing...lol


     

  • Racy
    Racy Member Posts: 2,651
    edited June 2015

    I am 4.5 years post diagnosis but I still consider myself to be a 'patient' as I feel I will always be under surveillance.

  • kittysister
    kittysister Member Posts: 212
    edited June 2015

    It hasn't been a year for me yet. I hope I will feel better about all this at some point .. and survivor will be an easier word to say. Not sure.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited June 2015

    While I don't feel like a survivor just six months after finishing my chemo, cut and burn treatment, I certainly don't feel like a dead person walking.

    Most survival stats are based on people still alive after five years, so I'll likely consider myself a survivor when I reach this milestone.

  • MoonRabbit
    MoonRabbit Member Posts: 12
    edited June 2015

    I agree, With stage I, which is my case, seems like I should be called something else after all is said and done. I would think it would really depend on how the person had to fight in later stages. You survive the treatments in the early stages, and the cancer in the later maybe.

    I'm realizing there's no such thing as just a little cancer though....If you have ever read the Little Prince, it is like his fight to remove all the Baobabs that keeps him ever vigilant.

  • Nagoskwe
    Nagoskwe Member Posts: 26
    edited June 2015

    I don't like the term either, especially since anyone who is still above ground can call themselves a survivor. I am a warrior, I battle this thing called cancer, and I will win this battle. surviving is not what I plan to do I plan win and live, I don't want to just survive it.

  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    After chemo and 3 surgeries I definetly feel like a TREATMENT survivor. I guess I'm also a warrior, cause I have enough battle scars and reminders of chemo (funky nails, neuropathy, eyes that tear in the wind and sun). But with being on AI's for the next 9 years, I still feel like a cancer patient.  Like other's when asked if I'm "cured", I just say "hope so" and knock on wood.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    I did survive a disease 12 years ago that I wasn't expected to survive. So I guess in the true definition of the word, I am a survivor.
    However, if I had to pick a label for myself, I think it would be an endurer. I've endured everything that has been thrown at me so far.

    People can call me whatever they want as long as I'm still kicking!!


  • tangandchris
    tangandchris Member Posts: 1,855
    edited June 2015

    I am not comfortable with the survivor term either, but I also do feel like a treatment survivor :) Treatment was hell, I had 5 surgeries from November 2013-June 2014 and chemo and radiation....so yes I survived that part.

    I am coming up on my one year ending all active treatment, I finished radiation in August of last year. I am supposed to be on Tamoxifen, but I don't take it like I should.

    My point, I still feel like I'm fighting the beast and I don't know if I am in fact a cancer survivor. I once told someone I was a survivor and I felt like was talking about someone else...weird.

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2015

    I post this same Shakespearean quote on every thread that is about this subject of labeling us:

    "A rose by any other name would smell as sweet..." (or maybe, in this case, as rotten.)

    I got my Dx, did the treatment. It seems like it is gone now and I hope it stays that way. I could care less what it is CALLED.

    I fully understand all the pro and con points made about these various labels and I just don't think there is going to be one descriptive label that everyone out there likes. So, whaddya gonna do?

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2015

    Survivorship is a state of mind as much as anything.

    Be sure to read this excellent and interesting article:

    Recovering from and surviving cancer: a consumer perspective


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015
    That's a very interesting article - and newsletter - Traveltext. Thanks for pointing it out.
  • Itzy
    Itzy Member Posts: 46
    edited July 2015


    Thank you, Muska, for your post.  I'm a BC newbie, but I lost my mother to BC 38 years ago, and 7 years ago, my step-sister.  In my thinking, every living woman who has received a diagnosis of BC is a survivor, until of course, she isn't.  There's a certain arrogance in embracing the title 'survivor' that leaves me distinctly uncomfortable.  If ultimately I am able to enjoy the next couple of decades without recurrent breast cancer, I will call myself blessed, but even more so humbled to have been spared the fate of my mother and so many others. 

  • IamNancy
    IamNancy Member Posts: 1,158
    edited July 2015

    I never really know what to say - a survivor? I always say I recovered BC .. but its not really recovered, is it? I mean, I know I am cancer -free now and its been 3 yrs.. but I am still under treatment by taking that little pill and seeing doctors every 6 months  ..all in all I realize we are just talking about terminology but what is the correct terms - recovering, recovered, survivor, dealt with ???

  • Penzance
    Penzance Member Posts: 101
    edited July 2015

    Very good timing. I had a rant about the term 'survivor' on another forum only this morning. I absolutely loathe it. I think people who use it are taking their eyes off the ball too, as if treatment would ensure there is no cancerous cells left anywhere in the body, when only time will tell.

    'I was perfectly fine when I was diagnosed.' - I bet some people told you 'oh but you don't look like you have cancer'!

    'Do we call people diagnosed with diabetes survivors? Do we call everybody who had a heart attack a survivor? As breast cancer treatments are now somewhat similar to managing other chronic conditions why would we call every woman with breast cancer a survivor?' - Very good point.

    'I have no way of knowing if I will survive cancer or if it will ultimately take me out, so yes, I have trouble with the "survivor" label.' - Precisely. The only way to ensure you 'survive' the cancer (i.e. don't die of it) would be killing yourself: this way you have full control about what you die of. One of my big fantasies: being able to choose my death... Stage 4 doesn't appeal at all, and somehow the survivor label feels like it's not taking stock of how serious the situation was at one time. I do take care not to die of something else (collision with a car when cycling or walking on the side of the road etc.) but sometimes it seems that a death like that would be less ugly than what may be lying in wait for me.

    'Some questions just shouldn't be asked.' - I get fed up with people who want to discuss my condition, unless they're (carefully chosen) medical professionals.

    Any one hates the similes about being a 'warrior' and 'winning this fight' etc.?

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited July 2015

    I hate it and don't think it's appropriate. None of us really know if we are survivors or not - I think it's a stupid title, for me anyway.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2015

    We are actually survivors of BC and every other medical issue we've had to deal with. But with BC we're all on different percentage rates of a recurrence in the form of metastasis which arguably makes us pretty tenuous survivors.

    But I'm in favour of people calling themselves what they like.

  • Sunshine1958
    Sunshine1958 Member Posts: 22
    edited July 2015

    Oh my goodness, Muska, I can totally relate!!!

    I still remember the first time that--after telling an old friend that I'd had cancer a few years ago and shared with her my particular situation--she'd shrieked "Oh! So you're a SURVIVOR!!!!!".

    I was shocked by that proclamation, and I thought to myself "Ummmm, not really...as far as I'm concerned, dealing with a cancer that was never life-threatening to begin with is not the same as facing a situation where I was in danger of losing my life to cancer...THEN I would be comfortable with being called a survivor".

    So while I knew her intentions were good, I didn't think I had the "right" to be considered a survivor, if that makes sense.

  • LeftyWasMyFavorite
    LeftyWasMyFavorite Member Posts: 15
    edited July 2015

    Yeah, I don't like the term survivor, I'm just lucky for the moment. I also don't care for the whole fight/fighter thing because that implies you have control over your cancer, that if you fight hard or are strong enough you can beat it. Do those who die from this horrible disease despite treatment not fight hard enough, are they to blame? No, it's luck of the draw and last time I checked there's no cure. Just my two cents...

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    Lefty, you took the words right out of my mouth. Well put!

  • AnniebNJ
    AnniebNJ Member Posts: 33
    edited July 2015

    Sunshine, I completely agree with your feeling of not having the 'right' to be called a survivor. I just finished rads last week, sailed through them with no issues. The tech suggested I go to a spa run by a charity for women dealing with cancer. I said I didnt really think I qualified, she looked at me as if I was nuts. Now that my next step is arimidex, I feel that I am not in treatment for the cancer I had, I am just preventing a new cancer. The term 'survivor', to me, is someone who beat the odds. Fortunately being stage 1 and highly er+ means the odds are ever in my favor.

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