The label "cancer survivor"

rubytue

Dear fellow list servers,
I had a lumpectomy and radiation a year ago for DCIS and have recovered fully. But meanwhile I've become interested in this new label of "cancer survivor" that you and I and many others have been assigned; so interested in fact, that I'm doing a research paper on the subject for a graduate course in ethnomedicine at the University at Buffalo and will likely make it the topic of my master's
thesis.

This label of "survivor" seems to be used only to describe persons who
have recovered from cancer. It isn't applied to people who have recovered
from potentially deadly heart attacks, for instance, or stroke, or any
other chronic disease. I'm intrigued by the origin and purpose of this
term.

I'm interested in hearing the thoughts of other women on this subject,
and will keep your comments anonymous. For starters, do you describe
yourself to others as a "cancer survivor?" Were you embarrassed to
admit you had cancer? Do you think there is still a stigma attached to
a cancer diganosis? Do you ever feel at all exploited as a "cancer
survivor", by for profit or non-profit
organizations established to raise money for cancer?

I'd very much like to hear your thoughts on these and any other issues
surrounding the label "cancer survivor."

Thanks and best regards,
Lois



--

ludasue

Hi Lois. I am a four year survivor. I never gave much thought to the word survivor until being diagnosed with breast cancer. On the one hand, I am PROUD to be called a survivor, but on the other hand, it is sometimes frustrating. In situations like I had at my workplace ... with people who know nothing about cancer ... they think of a cancer survivor as someone who is 'finished'. They never understood the numerous appointments and check-ups associated with being a survivor. I think we all know that from the diagnosis on, we are never truly finished, we just move on to the next step, and the next, and the next. Also, to answer your question about being exploited, I have not personally felt exploited as a survivor. Whatever it takes and however they can use me to raise awareness and funding to stop this disease is just fine with me. As for people with other illnesses, no, I don't hear survivor associated with them too often. I really don't have an opinion on why that is. In the long run though, I can only hope that people will continue refer to me as a survivor...as well as a fighter, a mother, a friend, a daughter, a sister, etc. Good luck on your paper. Best wishes, Angie

samari

Hi, I was also diagnosed with DCIS this February. I have had a lumpectomy and I am now recieving radiation treatments. My husband was diagnosed with stage 3 colon cancer a year and a half ago and has completed 8 months of chemo which nearly killed him. I consider both of us survivors, but I really don't define myself through cancer. My father died 2 years ago from heart disease and it really is different. The treatment is clear and either succeeds or doesn't - we pretty much knew where he was - with the cancer it is like shooting wround in the dark - maybe the chemo got it maybe not, maybe the radiation got it maybe not, maybe there is nothing to get - maybe the surgery got everything. I find it much more baffling and much much more uncertain.
When my surgeon explained my diagnosis to me and then said some women have a mastecomy and some women do nothing and then there are all sorts of choices in between. Well, decide and then survive and it is always there, or is it????
Good luck!
Mari

24242

Good for you Lois,
I believe that the survivor label is used for cancer because of its potential deadly nature. Other diseases one is expected to recover from but some forms of cancer are not. I can't think of a better thing to be than a survivor when the alternative isn't an option for me. I seem to have more problems with the word being "cured" than I have had coping with being a survivor. I have seen the falsehoods that have come with the word cure and surviving is pretty simple. Good luck with your paper.
Be good to yourself always,
Tara

jmears

Hi Lois
I don't feel exploited. Anything to prevent other women from having to experience this disease, profit or non-profit, is fine with me.
I agree with the other ladies that the survivor term is more relavent to cancer because of the uncertainty of the outcome. I don't know why people don't refer to stroke and heart attack patients as survivors ... they certainly have a struggle to go through. I don't call myself a cancer survivor and I have tried most recently to not mention it to anyone (those who know and those who don't) because I don't want cancer to define me.
The television show "Suvivor" made me think about that work. I laugh at it saying "you call that surviving ... how about giving the contestants life threatening diseases and mediocre medical insurance ...see how they manage getting good diagnosis and caring doctors". Who needs made up adventures to challenge yourself ..right?
Good luck with the paper.
Jamie

mrsbe

24242 said:

Good for you Lois,
I believe that the survivor label is used for cancer because of its potential deadly nature. Other diseases one is expected to recover from but some forms of cancer are not. I can't think of a better thing to be than a survivor when the alternative isn't an option for me. I seem to have more problems with the word being "cured" than I have had coping with being a survivor. I have seen the falsehoods that have come with the word cure and surviving is pretty simple. Good luck with your paper.
Be good to yourself always,
Tara

I think the word survivor is correctly used in context with cancer. Firstly because there is no cure for cancer, so your not cured from cancer
but you have survived it, and many of us have survived it
several times. Its similiar to hearing about a plane
crash or a train wreck ...its mostly an unforseen happening with
catastrophic results, if you survive that your also called a survivor.
Fourtunatly now due to medical advancements many more of us
are fourtunate enough to carry this name CANCER SURVIVOR.
Good luck on your paper

MrsBe

nhornb

Back in July 1999 when I was first diagnosed with Breast Cancer I was given three months to live. Thats what makes me a survivor. I wear the name proudly for all the women out there who are no longer here and who are going through it. The ladies are right. There is no cure, only the next step. But I take it over and over again. A Cancer survivor, yes, I am And if being labeled a survivor means I get to see my children grow up and it can give other women hope so be it. was I embarrashed when I found out I had cancer? Yes, I was but not like you think I was embarrashed that I was so ignorant to think that it would never happen to me and that I knew nothing about it because I looked the other way. I now rally for any cause not just cancer, but racism, aids, all the things I was too ignorant to face. I wear my pink ribbon and when I write to friends and families whether it be a letter or a christmas card I always remind them to get a mammogram. Good luck on your paper.

nasa2537

Hi Lois! You bring up a very interesting point. I never thought of other people surviving other potentially deadly diseases never being referred to as a survivor. I have no explanation for that, except that maybe the various cancer organizations are more pro-active than organizations for the other illnesses, and put a name to it to make us all feel like we belong somewhere. I don't know.....

Anyway,I'm 43 years old, and I am an 8 month survivor of Stage 1 breast cancer. I had 33 radiation treatments (fried breast, anyone?). I am now on tamoxifen for 5 years.

I have never felt exploited by the cancer organizations. In fact, quite the contrary. When I didn't know where to turn for outside support (my family has been so very supportive, but I felt the need to meet other women who have been there), I happened to get a phone call from a wonderful lady who volunteers for Reach To Recovery through the American Cancer Society. She came to the house, gave me pamphlets and some other things (like a small pillow to place under my arm when laying down...excellent idea when you're first healing), told me about her cancer, invited me to the support group, and told me to call if I needed to talk. I have gotten involved in several walks, because I feel a need....a very big need....to help in some way to irradicate this insipid disease. I can't do research, but I can help raise money. I'm not good at asking for money, but I am learning. I have a goal that my 2 yr old nephew's generation never has to hear the words "breast cancer."

I made it a point right from the beginning to try desperately to get the word cancer out of my mouth every time I told someone about it. I was never ashamed of it, never felt isolated, and never felt the need to hide it. I had it and had to deal with it, and I think it made it easier for others to deal with when they saw that I could speak about it outrightly. It feels no different to me than saying, "I have high blood pressure," which I've been saying for years. I'm not sure if I feel there is a stigma attached to cancer any more. I live in an area where there is a lot of support for various types of cancer. I suppose the hardest thing is trying to make other people understand that they can talk about it with me without bringing up bad memories or anything. I really have no bad memories. I found out I had a tumor, and my goal was to get it out, and make sure it stays gone. So, as far as I'm concerned, the whole thing has been a positive experience, because so far, we've been successful with the goal. I still have anxiety about my first post-treatment mammogram that is coming up, but I have to stay positive. Not only for me, but I want others to see that just because you have a cancer diagnosis, doesn't mean you have to lay right down and crumple up. I really think recovery is much faster with a positive attitude, also. For example, I may complain a bit, but I thank God for my hot flashes from the tamoxifen, because at least that means I'm alive to feel them!

Best wishes on your schooling, and thank God you are here to be able to go for your dream! Cyndi

shirlann

Hi, Lois, I have thought a lot about the term "Cancer Survivor". My husband has been a serious heart patient for 20 years, with many treatments and hospitalizations and no one ever said "survivor" to him. He lives daily, especially as he has "unstable angina" which means pains at any time, with the prospect of instant death. I find this just as fascinating as you do. I am 66, was diagnosed 3 years ago and am presently no new disease or "NED" as in "Club Ned". I remember as a child women whispering about breast cancer, I thought it was funny at the time, but women were just terrified. That is my only thought, for so long it was a death sentence because they really had no way to treat people and found out you had it so late in the disease cycle. But even now, I talk about it whenever I please, and sometimes the reaction is like a tennis shoe in the punch bowl. People look terrified, drift away and act like I am contagious. I find it very curious. As an older woman, I don't have to worry about the stigma, but there definitely is one. For instance I have worked for the church for 15 years and they recently offered a new long term care health plan and I am not eligible until I am 5 years post diagnosis. Many people can not get health insurance at all so it is very serious for the younger people. Also, even employers don't want you. I did not have that happen to me. I was already employed and could have retired had I chosen. I am very outspoken, so I told everyone I came in contact with. My theory was, let people see that some do just fine with this. I have not curtailed any trip, activity or any other part of my life because of cancer. I mention it a lot, (I have to admit, now, just to see the shocked reaction). A little of the devil in that! But, truly, this is ridiculous. When I mentioned it in my bible class of about 30 women, one was 22 years, post, one was 17 years post and one was 5 years post. But until I brought it up, no one had ever mentioned it. It is easy for me to be so uppity, I have raised my family and my husband is retired, we are okay financially whether I work or not, so I don't mean to be snide about my much younger sisters who are either single, pre-menopause, or have to work.

shirlann

shirlann said:

Hi, Lois, I have thought a lot about the term "Cancer Survivor". My husband has been a serious heart patient for 20 years, with many treatments and hospitalizations and no one ever said "survivor" to him. He lives daily, especially as he has "unstable angina" which means pains at any time, with the prospect of instant death. I find this just as fascinating as you do. I am 66, was diagnosed 3 years ago and am presently no new disease or "NED" as in "Club Ned". I remember as a child women whispering about breast cancer, I thought it was funny at the time, but women were just terrified. That is my only thought, for so long it was a death sentence because they really had no way to treat people and found out you had it so late in the disease cycle. But even now, I talk about it whenever I please, and sometimes the reaction is like a tennis shoe in the punch bowl. People look terrified, drift away and act like I am contagious. I find it very curious. As an older woman, I don't have to worry about the stigma, but there definitely is one. For instance I have worked for the church for 15 years and they recently offered a new long term care health plan and I am not eligible until I am 5 years post diagnosis. Many people can not get health insurance at all so it is very serious for the younger people. Also, even employers don't want you. I did not have that happen to me. I was already employed and could have retired had I chosen. I am very outspoken, so I told everyone I came in contact with. My theory was, let people see that some do just fine with this. I have not curtailed any trip, activity or any other part of my life because of cancer. I mention it a lot, (I have to admit, now, just to see the shocked reaction). A little of the devil in that! But, truly, this is ridiculous. When I mentioned it in my bible class of about 30 women, one was 22 years, post, one was 17 years post and one was 5 years post. But until I brought it up, no one had ever mentioned it. It is easy for me to be so uppity, I have raised my family and my husband is retired, we are okay financially whether I work or not, so I don't mean to be snide about my much younger sisters who are either single, pre-menopause, or have to work.

This is me again, somehow this blankety computer cut me off. Anyway, no, I have never been solicited or in any way harassed by any cancer organization. Other than a very mean surgeon and no follow-up care that I am not willing to pay for due to HMO's, I cannot complain, feel free to e-mail me. This is fun. Shirlann

debw

I hate the term. If I was in a car wreck and lived, would I be a "car wreck survivor"? I'm not a cancer survivor. I am a person who had cancer and it is under control at this time. "Remission" is another word I hate. Also the question "did they get it all". I always feel like saying "no, they left some to grow." Thanks for asking and let me vent.

debw

PS - I'm not a cancer survivor - I'm a cancer treatment survivor. You don't suvive cancer to outlast it.

debw

PS - I'm not a cancer survivor - I'm a cancer treatment survivor. You don't suvive cancer - you outlast it.

cruf

nasa2537 said:

Hi Lois! You bring up a very interesting point. I never thought of other people surviving other potentially deadly diseases never being referred to as a survivor. I have no explanation for that, except that maybe the various cancer organizations are more pro-active than organizations for the other illnesses, and put a name to it to make us all feel like we belong somewhere. I don't know.....

Anyway,I'm 43 years old, and I am an 8 month survivor of Stage 1 breast cancer. I had 33 radiation treatments (fried breast, anyone?). I am now on tamoxifen for 5 years.

I have never felt exploited by the cancer organizations. In fact, quite the contrary. When I didn't know where to turn for outside support (my family has been so very supportive, but I felt the need to meet other women who have been there), I happened to get a phone call from a wonderful lady who volunteers for Reach To Recovery through the American Cancer Society. She came to the house, gave me pamphlets and some other things (like a small pillow to place under my arm when laying down...excellent idea when you're first healing), told me about her cancer, invited me to the support group, and told me to call if I needed to talk. I have gotten involved in several walks, because I feel a need....a very big need....to help in some way to irradicate this insipid disease. I can't do research, but I can help raise money. I'm not good at asking for money, but I am learning. I have a goal that my 2 yr old nephew's generation never has to hear the words "breast cancer."

I made it a point right from the beginning to try desperately to get the word cancer out of my mouth every time I told someone about it. I was never ashamed of it, never felt isolated, and never felt the need to hide it. I had it and had to deal with it, and I think it made it easier for others to deal with when they saw that I could speak about it outrightly. It feels no different to me than saying, "I have high blood pressure," which I've been saying for years. I'm not sure if I feel there is a stigma attached to cancer any more. I live in an area where there is a lot of support for various types of cancer. I suppose the hardest thing is trying to make other people understand that they can talk about it with me without bringing up bad memories or anything. I really have no bad memories. I found out I had a tumor, and my goal was to get it out, and make sure it stays gone. So, as far as I'm concerned, the whole thing has been a positive experience, because so far, we've been successful with the goal. I still have anxiety about my first post-treatment mammogram that is coming up, but I have to stay positive. Not only for me, but I want others to see that just because you have a cancer diagnosis, doesn't mean you have to lay right down and crumple up. I really think recovery is much faster with a positive attitude, also. For example, I may complain a bit, but I thank God for my hot flashes from the tamoxifen, because at least that means I'm alive to feel them!

Best wishes on your schooling, and thank God you are here to be able to go for your dream! Cyndi

Cyndi! Very well put! I feel exactly the same way! Take care! HUGS!! Cathy

jmears

debw said:

I hate the term. If I was in a car wreck and lived, would I be a "car wreck survivor"? I'm not a cancer survivor. I am a person who had cancer and it is under control at this time. "Remission" is another word I hate. Also the question "did they get it all". I always feel like saying "no, they left some to grow." Thanks for asking and let me vent.

I just have to say I laughed out load when I read "no, they left some to grow". That's great!!! See ... things like that show how much more the public needs to be educated about cancer, the treatments, and the fight to prevent it!!! Jamie

rubytue

debw said:

PS - I'm not a cancer survivor - I'm a cancer treatment survivor. You don't suvive cancer to outlast it.

Dear Debw,
SO far, you and I are the only persons who resent the term cancer survivor.
I feel that the label keeps me in the cancer world. I want to escape from the cancer world, and until I find out otherwise, I consider myself escaped. It's been very interesting to hear this discussion.

jeancmici

rubytue said:

Dear Debw,
SO far, you and I are the only persons who resent the term cancer survivor.
I feel that the label keeps me in the cancer world. I want to escape from the cancer world, and until I find out otherwise, I consider myself escaped. It's been very interesting to hear this discussion.

Hi Rubytue,

Greetings from Buffalo! I'm 64 - diagnosed at 63. Lumpectomy, AC, Taxol, Radiation.

I do not resent the term 'cancer survivor' - just think it is ridiculous, but we have expressions for everything ih the U.S. An organization with the name YMe is stupid too - sorry to any members. I never said, Why Me? Everyone is not handed the same hand of cards so why not me?

I also hate to read someone "thanking" God for the cancer so that they now could have an appreciation and purpose in life.

The 'survivor' can have a relapse - as many of us probably will some day - why else the 3 month check-ups? I went 4 months once and the oncologist said - please stay on the 3 month schedule!

I often - to explain why I'm not running around like a spring chicken anymore - say, I had treatment for cancer last year and am somewhat out of shape after the ordeal.

If someone asks, "Did they get it all?" or "Are you all right now?" I know that person needs some education ( I did too before all this) and say, "That promise is not given anymore because no one know if they got it all - and doctors don't make such promises now. I'm all right NOW.

If they look somewhat taken aback, I add, "I hope it's gone, time will tell, and in the meantime I'm not planning to sit in a rocking chair to wait and see.

Good Luck with your studies. This topic seems somewhat thin for a master's project, tho'.

Regards, Jean

lemon

I can tell you personally I got trapped under the ice. Fractured my c6and7 and was physically hit with a motorcycle thats just a few,of the things that happened to me, plus a colon tear.You either make it or you do not. You do not have all that time to think about it. You do not have a million decisions to make and look at your family and try to reassure them when your world is falling apart. Most serious things are as bad as it gets when you get to the hospital. with cancer you arrive physically well except they found this little spot,or in my case 5cm bursitis. The battle just to get someone to listen about how bad my arm was, was something I will never forget.They assume if you over 40 you have bursitis if your under40 you are too young to have cancer. Gee I wonder why more women are not cured. Then the battle if nothing shows in a mamo.Don't have cancer up high in your breast.I finally sat down and said someone was going to find out what was wrong. I wasn't leaving until they found the problem. I and most of the women are truly warriors in the fight first to make it through treatment and then to help anyone else we can in this battle but I think Cancer warriors might be more accurate. I don't care who knows Ive had cancer. I can say I have lost some friends because they say they feel funny telling me about all their little aches and pains.Truth be told I am a different person after treatment. I really don't have the patience to put up with people who are really healthy and are desperatly trying to find a disease. I can say I feel bad but I just can't listen to that anymore. I do not feel like a survivor. That would mean I thought the battle was over and I know better.I am a B.C.Warrior so are so many of the ladies I have met that are still fighting the beast. Its like Freddie Kruger{is that how its spelled] Just when you think you have it licked it pops up again. So it turns into a war we are all well aware can flare up again at any time. Its a very mean enemy because you are never cured. You just have to build your self up and prepare incase you have another battle with this terrible beast. The more I listen to other warriors I realize just how proud I am to be a woman. One who has cancer and is willing to do what ever it takes to survive to fight another day.

lemon

I can tell you personally I got trapped under the ice. Fractured my c6and7 and was physically hit with a motorcycle thats just a few,of the things that happened to me, plus a colon tear.You either make it or you do not. You do not have all that time to think about it. You do not have a million decisions to make and look at your family and try to reassure them when your world is falling apart. Most serious things are as bad as it gets when you get to the hospital. with cancer you arrive physically well except they found this little spot,or in my case 5cm bursitis. The battle just to get someone to listen about how bad my arm was, was something I will never forget.They assume if you over 40 you have bursitis if your under40 you are too young to have cancer. Gee I wonder why more women are not cured. Then the battle if nothing shows in a mamo.Don't have cancer up high in your breast.I finally sat down and said someone was going to find out what was wrong. I wasn't leaving until they found the problem. I and most of the women are truly warriors in the fight first to make it through treatment and then to help anyone else we can in this battle but I think Cancer warriors might be more accurate. I don't care who knows Ive had cancer. I can say I have lost some friends because they say they feel funny telling me about all their little aches and pains.Truth be told I am a different person after treatment. I really don't have the patience to put up with people who are really healthy and are desperatly trying to find a disease. I can say I feel bad but I just can't listen to that anymore. I do not feel like a survivor. That would mean I thought the battle was over and I know better.I am a B.C.Warrior so are so many of the ladies I have met that are still fighting the beast. Its like Freddie Kruger{is that how its spelled] Just when you think you have it licked it pops up again. So it turns into a war we are all well aware can flare up again at any time. Its a very mean enemy because you are never cured. You just have to build your self up and prepare incase you have another battle with this terrible beast. The more I listen to other warriors I realize just how proud I am to be a woman. One who has cancer and is willing to do what ever it takes to survive to fight another day.

redwoman

Hi, Lois, my name is Lois, too. I am a three year breast cancer survivor, and I am proud.
I watched my great grandmother die of bc three years before I was diagnosed, and that was part of what kept me fighting.
I was only 32 and a working single mom of two little boys at the timeand they were my best inspiration.
I tell everyone who will listen that I am a survivor. I'm even considering writting a book. Hopefully, I can help someone else make it through this horrible and terrifying time. Maybe I'm too vocal, but that is how I delt with it.
After cancer, I have remarried and we are expecting a baby in October. Next year, I'm going back to college to finish my bachelors degree in social work. All in all, I'm stronger and happier now than I was before cancer.
Yes, I'm very proud to be called a breast cancer survivor. I wish my great grandmother was here now to see my new life. I was named after her, and I guess I have her Cherokee strength.
To all of the other survivors, I wish you the very best. Be strong and stick together.
And thanks, Lois, for listening. I wish you the best, too!!
Thanks again, Lois

yarn_magician13

new to all this

If you had told me on April 1 of this year that I would soon be dealing with breast cancer, I would have assumed it was a nasty April Fools joke. I was 61 & going along in my life, losing weight, working out, getting healthy, enjoying empty nest with my husband. Then I went for my routine mammogram, didn't even give it much though. Afterall, I do this every single year and it's always OK. Then the call, something doesn't look right and it all changed for me. By mid may, I was diagnosed with DCIS, Stage 0. I'm lucky I guess, if you have to get breast cancer, I got the 'best kind'...contained, caught early. 7/2 I had a lumpectomy, reduction and reconstruction. I've been dealing wtih infection so radiation is still in the future, once I'm all healed. I won't truly consider myself a survivor until after that first mammogram after this all over I guess. But I am a 'survivor to be', I am going along in life just assuming this will NOT happen again. Of course every mammogram after this will be a terrifying wait but it is what it is. I'm trying to view my treatment as a means to an end. I will tell anyone and everyong to get your mammograms...it's not a good thing to tell me you havn't kept up with those!!   But I am and will be a LOUD survivor, spreading info, volunteering and hiding nothing. by the end of the year I plan on proclaiming, "I had breast cancer, but I have survived". I will wear pink, I will put a pink ribbon magnet on my car and on my facebook. Not to draw attention to myself but to help others maybe open up about themselves or encourage them to take care of themselves and not put off what you need to do. Better to find it early, as I did, then to bury your head in the sand and then it's too late.