How do you feel about the word "survivor"?

sideout · June 2010

I recently wrote a blog post for work about how the word "survivor" is viewed within the cancer community (http://www.side-out.org/blog/the-language-of-a-survivor/), and I was wondering if anyone has any additional suggestions/comments about the term.

I am 32, and I've had leukemia twice in the past five years. I alternate between the term "survivor" and "patient", and I never thought much about how those of us who have or have had cancer describe ourselves. I never thought about it until I began attending a young adult support group and working for an organization that raises funds for breast cancer research and education.

I appreciate any insight you would like to share. Eventually, I would like to write another post about the word and begin compiling a list of terms that may be preferable to "survivor".

Thanks for your help!
Julie

hymil · June 2010

Mostly I feel good that i have survived this experience although that is more to my doctors' credit than anything i have done myself, beyond simple hygiene rest diet and exercise and patience while the healing process takes its own schedule

but sometimes i feel how temporary it all is and ge tthe feeling that maybe it's just waiting to strike again, then it feels like tempting fate to say i have survived.... SO FAR! I'm only just out of active treatment, so i'm not really a patient any more, apart from recall follow-ups.. Im telling the world and myself that I have had BC, not that I now have it (so far as we know). But i can't live the rest of my life (which could be another forty years, or i could end under a lorry tomorrow) on a knife edge like that, so moving beyond is about putting it behind me without ignoring possible warning signs. Seems a hard balance. Advice from those further beyond?

Sierra · June 2010

Hi:

Im several years out

and call myself a

Thriver, or survivor

really, am just happy to be here

Each day is a blessing! that is for sure

and we dont know how we will be taken

or when!

lots of hugs,

I do one day at a time

since dx and it works for me

but still get edgy at mammo time

I do wish you all the very best

on your path, Take good care

Sierra

iodine · June 2010

I'm in the generation before survivor became the PC way to describe patients. I'm also a nurse, so patient comes easily to my tongue, much more so than the PC description.

I've always felt a bit pushed to use survivor---sorta the Pollyanna description. What's so wrong with patient?. What's so wrong with I've Had breast cancer? Obviously, I'm alive, so I survived(thus far)---I also survived the drive to the movie tonight. And I've had major car wrecks in my past, now THAT I call surviving. I really Should have died. I flew -- and survived.

I still feel pushed to use that word, I guess they came up with it to avoid victim. In my day, you were a cancer victim, and the word cancer was not used--the big C, CA, what ever. So, it's all up to you and me to decide what description we choose. At almost 8 years out, I'm a retired nurse. I have no further description of who or what I am. I'm ME.

lisa-e · June 2010

I also dislike the term survivor. I haven't really felt like my life span will be cut short by my breast cancer. It is more accurate to say I was diagnosed with breast cancer and treated for it. I think the term survivor is connected with the commercialization of breast cancer, ie pink washing, which I dislike intensely.

wallycat · June 2010

I don't use the word....a breast cancer (or any cancer) survivor is one who dies from something else.

I hope I am on my death bed and become a survivor...and die of old age

Bren-2007 · June 2010

I'm with Dottie ... if someone asks, I say I had cancer a few years ago. Not "I'm a three year survivor."

When I was first diagnosed and before surgery, I asked my sis why these gals say "I'm a 7 year (or whatever year) survivor." I didn't have a clue. Well .. she's never had cancer, but she had the answer for me ... there is no cure for cancer, so we count it in years that it doesn't come back.

Reminds me of AA ... wherever everyone is known for the amount of their sober years.

Anyway .. my sis' response to my question freaked me out. All I could think about was now I start counting my years down.

I have nothing against the term survivor (although it does remind me of that t.v. show), I just prefer to simply say, I had cancer.

Bren

crazy4carrots · June 2010

I don't like the term "survivor". As others have suggested, the term seems to mean that I've HAD bc (as though I "survived a plane crash) and now I don't have it and never shall it return. Well, I sure hope it doesn't but, since being on an AI means I'm still in active tx, and that I cannot give blood, and that for other purposes I'mconsidered a bc patient -- well, survivor is not the right word to describe me! I did survive surgery and chemo, but I'm still a bc patient, not knowing from one test to the next whether I'm growing any more bc cells.

Wish I could think of a better descriptor!

gracejon · June 2010

I think that the word survivor makes others,that haven't been through the surgery, chemo and what not that the cancer patient has been through, feel good. I would have tried to live regardless of what happened therefore I am a survivor before during and thankfully after treatment. I still think medical providers and definitely insurance made me a victim. I am so slowly getting over that cause my anger regarding the bells whistles and hoops required to get er done was the most tolling experience. I do my best to help other throygh the system because I felt very alone trying to navigate the system, I accept whatever anyone wants to call themselves and accept the word survivor to those who wish to call me that name.

tweetybird · June 2010

I don't feel like a survivor myself, since I'm still seeing 2 different doctors, and alternating every 6 months with a mamo/ultrasound and MRI/ultra sound, plus blood work once a year, and on tamoxifen for another year and a half. When I'm done with that they're looking into another 5 years of armidex. When people find out that I'm a "survivor", I let them know that I've had breast cancer almost 4 years ago, or I'm 4 years out.

Gotta agree with Wally, that I'm not going to consider my self a survivor, until I pass away from something else, hopefully at a ripe old age.

Anonymous · June 2010

I don't consider myself a survivor either for many of the reasons aleady stated. I felt like a victim from the start of this adventure and continue to do. Cancer has changed me and I hate the "new" me. It's been a year since I found the cancer and a year of suffering one way or another. I don't want to embrace this experience. I would like to forget that this ever happened. Everytime I look in the mirror I am constantly reminded of the turmoil. Everything I enjoyed in the past is gone. Its like they took that when they took out the cancer. So am I a survivor? NO.

NatsFan · June 2010

I like the term survivor - I went through holy heck with the multiple surgeries, chemo, and everthing else that makes up active treatment, and even now this Femara is no picnic. Beating back breast cancer is one of the hardest things I've ever done in my life, so every day that I'm here kicking cancer butt makes me a survivor for that day.

But, I also agree with hymil that when I say "I'm a 2 year survivor" I usually add "so far" - none of us knows what the future holds for us.

otter · June 2010

I feel the way iodine/Dotti does, except I haven't had the major car wrecks.

But, I agree -- why are people who've had cancer singled out for the title, "survivor"? Why not people who've had, and survived, strokes or heart attacks? I have a family member who has diabetes and failing kidneys -- why don't people call her a "survivor"?

People "survive" a car wreck or a plane crash if they are still alive afterward. To me, that makes some sense. But, how long are those people referred to as "survivors" of the car wreck or plane crash? Do we still call them "survivors" 10 or 20 years later? Apparently, everyone who has ever had cancer and is still alive, regardless of their stage or health status, is a "survivor"... even if the cancer was childhood leukemia that has been in remission for 45 years, or it was a tiny little basal cell carcinoma that was shaved off, never to return. Cancer is cancer, after all.

I've known for quite awhile that the title "survivor" made me uncomfortable. I didn't realize how uncomfortable it made me until a few months ago, when I was socializing with some close friends of my in-laws. Everyone at the table knew I had breast cancer and had completed chemotherapy 18 months earlier ... at least, I thought they knew. We'd talked about it before.

So, imagine my surprise when my dh made some factual comment referring to my experience with chemotherapy, and one of the people at the table looked directly at me and said, "OH! So, you're a survivor?!". It sounded to me as if his statement was a cross between a question and a declaration. And, I had to bite my tongue to suppress my impulse to respond, "Do I look dead or something? Of course I'm alive." I was aware that he'd had cancer himself, so I knew better than to say something insulting or stupid.

I really don't remember what I did say; I just remember the jolt I felt when he said that. "OH! So, you're a survivor?" ... as if I was now a member of some sort of fraternity I had not meant to join.

In other words, I do not like the word, "survivor". I had cancer, I was treated for it (quite aggressively), and I am now feeling great. NED. Remission. Whatever.

otter

RIV54 · June 2010

I've become more uncomfortable with the term survivor, but thinking about it I realize that people who haven't gone through cancer dx and tx don't really understand how a person going through dx and tx truly feels. So they try to be optimistic and not offend a cancer pt. Dh and I were having breakfast on Saturday and he asked me if I was still experiencing some of the se of mx and tx. I don't know why I chose that moment to explain to him that when someone asks how I am doing or feeling, when I say fine or OK they don't know what that means to me. Behind that response there's the unspoken: I still have sore ribs from rads, my upper arm is still numb from lymph node removal, I still have neuropathy on the bottom of my feet and I still deal with LE in my left arm, Not to mention I'm tired as h*!! at the end of the day after working 8 hrs. That would qualify as surviving another day don't you think? I would guess that someone who hasn't been dx'd would view someone who has gone through dx and tx as having survived something they deem to be the worst thing that could happen to anyone. So having survived, I am a survivor, and usually the phrase 'breast cancer survivor' is what is used. Using NED to someone not familiar with the terminology requires explanation. Remission comes with the assumption that the disease may come back, and that carries a bit of cynicism. I think I just talked myself into calling myself a 'survivor' for lack of a better label.

riley702 · June 2010

I agree with otter. I don't really like the term survivor (or victim, or the terms journey, path, battle, etc.) I'm just me. Doing the best I can for as long as I can.

SusieMTN · June 2010

I like the term "Survivor" or "Warrior", and for me it includes anyone from stage 0 to 4. We go thru a lot and if we survive the treatment that we have to endure then we are "Survivors" or "Warriors". We continue to fight to stay healthy and cancer free.

But the great thing is we are free to use whatever word feels right for each of us.

Have a nice night ladies!

havehope · June 2010

I don't like to call myself a survivor. I had a sickness and now I don't have it anymore ( this is in short as I know I cannot have the certitude that I am cured). I was not dying at the time of dx so I am not a survivor by definition. Technically I did survive the surgeries as all surgeries are risky business but then all people that had surgeries are survivors.

BreastCancerRegistry · June 2010

I think it is hard to choose a term that is not offensive. Victim makes us sound weak and helpless. Warrior makes it seem like were always strong. Survivor seems the most ambiguous, it can mean what ever you want it to mean. It could be that your bc is gone forever, that you have passed away or that you are fighting it to the best of your ability. I personally think the fighting it to the best of your ability intrepretation isn't so bad.

How do you feel about the word "survivor"?

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