again, the question: who are breast cancer survivors

The word survivor in the world of cancer is one that is loosely used, misunderstood by most and loathed by many. When I was diagnosed, my oncology team told me that everyone with breast cancer is considered a survivor. I find that definition to be consistent within the medical community where they do not differentiate between those who are in remission and those who are in active treatment, regardless whether the treatment is for early stage or stage IV breast cancer.

After my remission went kaput, four years after my primary cancer, and I returned to active and strenuous treatment, I found that definitions in the lay population seemed to be different. Even among the populations that you might think would understand the term “survivor.” When I attended a Susan G. Komen event, the largest organization representing the world of survivorship in the land of breast cancer, I was a a year and five months out from my diagnosis of bone metastasis, or stage IV, breast cancer. I had had extensive surgery on my back for the damage from the cancer, and it required me to use a walker and to wear a TLSO (thoraco-lumbo-sacral orthosis) brace. When I got to the site of the race, I asked a number of Komen volunteers and staff if there was a place for me to sign in or to go. They looked at me a bit oddly and responded to my statement that I was in treatment for mets, and they told me that the sign-in was “only for survivors” with a not-so-subtle tone of disbelief that I presented myself as a survivor. I felt a bit shell-shocked at, first, being at a breast cancer event of that magnitude and being told that I was not a survivor and, second, being made to feel uncomfortable because they seemed not to know what I was. They simply excluded me because they assumed I did not fit their impression of a survivor.

Still, I pursued my query. As I became inured to the responses I received, I became a bit more assertive. I said to one person, Well, really, don’t you think that if anyone is a survivor, it is women like me who are fighting to stay alive from mets; I got a blank stare. When it came time to participate in the so-called victory march where survivors run or walk a circuit to show that they have achieved the stardom of remission, more commonly called survivorship, I walked up to the folks at the entrance and simply told them that I was going to do the walk with my walker because I thought I deserved to be recognized as a survivor. They looked very uncomfortable but did not argue with me. After all, probably the last thing they wanted was to have a woman in a big back brace hobbling around their victory course and tainting their projection of the so-called survivor.

Throughout that event I was constantly amazed that no part of that huge Los Angeles style event included any recognition for the women who had metastasis and were in the throes of staying alive through treatment for the rest of their uncertain lives How in the world does an organization like Komen leave out the thousands of women, and men, whose ranks will lose 40,000 every year and whose members never know when that fateful day will arrive.

That day lasted privately in my mind for a long time. I never even told the wonderful folks who sponsored Team Peaches and ran and raised money on my behalf because I never wanted them to feel any of the disappointment I felt with Komen. It was, after all, not a disappointment with the people who trained for the event and generously gave of themselves but for the breast cancer community who should know better and should be teaching others what survivorship means. It was the first time I realized such a disparity exists, but it made a lasting impression on me that some of us need to help define that word better. Do you define yourself as a survivor? Do you define yourself at all? How do you define others you know who are in remission and those who are living on the edge of uncertainty with metastases? Do you think we should have different labels or no labels?

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© 2004–2012 Donna Peach. All rights reserved.
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28 responses to “again, the question: who are breast cancer survivors

  1. There’s a debate raging right now over the documentary Pink Ribbons Inc and THIS post should be linked to the man who reviewed the movie. Here’s the Facebook conversation: http://www.facebook.com/permalink.php?story_fbid=124612791015199&id=171880872914883&comment_id=118169&notif_t=like

    And, here is the article:

    http://www.stltoday.com/entertainment/movies/reviews/cancer-documentary-pink-ribbons-inc-is-too-fuzzy/article_65b15848-d0a3-11e1-96fe-001a4bcf6878.html

    And these are the comments (where I opened my BIG mouth):

    http://www.stltoday.com/entertainment/movies/reviews/cancer-documentary-pink-ribbons-has-too-many-loose-ends/article_65b15848-d0a3-11e1-96fe-001a4bcf6878.html?mode=comments

    This is brilliant, Donna. As usual. As ALWAYS….

    Much love to you,
    AnneMarie

  2. Well, knowing what we do about the whole Komen org this does not surprise me. I always say that Susan would be very disappointed with what her foundationn has become. I think it is up to the individual. I’d say you are a survivor Donna because you were beating it initially before it spread. We Mets people know we are Breast cancer’s dirty little secret to some. I don’t consider myself a survivor yet because I haven’t ever gone into a remission. I posted an article to my FB page about this same thing (you probably already saw it too) http://well.blogs.nytimes.com/2012/07/12/what-does-it-mean-to-be-a-cancer-survivor/?smid=fb-share

  3. Thats komen for you – all about pink, not about people. No i am not a survivor. That is a lsbel. I am a person living with cancer.

  4. I am so saddened to hear this story. I wish I had been next to you during that event so there would be others supporting your right. While I have had a mastectomy, chemo, radiation and reconstruction I find it hard to consider myself a survivor. Why? Well, because I am potentially one day away from mets myself. If anyone who has had breast cancer thinks otherwise, they are in my opinion going along with the hype. No one knows whose cancer could take a turn 3,4,5,6 or 7 years later, or anytime after having been told they have been “cured”. They are a “survivor”. For me, I just say that at this time I consider myself a thriver.

  5. Oh! This breaks my heart & makes me so angry! Donna, would you let me repost this in it’s entirety on my blog this week? I’d also like to use the photograph as well. I want lots of people cheering for you from the stands. Can you hear me cheering, now, because I am.

    Email me and let me know.

    XOXOXO,
    Brenda

  6. I agree with your impression of Komen Donna, as I have indicated before. In my book the day you receive your diagnosis is the day one becomes a survivor! Either you are surviving for however long the fates allow, or you are no longer alive. Maybe a simplistic way of looking at things, but it works for me. I stopped participating in anything Komen years ago as I was made to feel unwelcome and almost “dirty” because I did not bring in pledges of $thousands. Why do they give away prizes for the most raised? Where does that come from? I do a few local walks by volunteering and knowing that 100% stays here assisting victims who are in desperate need. I too would like to think that Susan Komen would be disappointed at how her cause has evolved. I pray and cheer for you daily my sister!

  7. I have had a lumpectomy,followed by lymph node disection, chemo, radiation, & shortly thereafter developed lymphedema. I will never say I am a survivor, or that I kicked cancer ass. I am so uncomfortable with such a concept. My oncologist will never tell me I am cured or cancer-free. I agree. She says, “Right now, things look good.” People ask outright if I am in remission , if I am cancer free. I just say that right now there is no evidence of disease I wish there was a perfect response.
    I could weep for what you experienced, Donna, and I fill with joy for how you stood your ground. Shame on the Komen Association. It is time for change!

  8. Well, Donna, I think you probably know my feelings on this one. This is one of my major gripes with Komen and all the pink hoopla for that matter. How in the world can the very women (and men) who need the support the most be left out in the cold. I’m once again baffled and I’m very sorry you had that awful experience. And for the record, I avoid most labels whenever I can. I just posted on the label thing and in case you missed it, here’s the link. Hugs. I’m sharing this. Thank you to Brenda for sharing as well.

    http://nancyspoint.com/labels-belong-on-soup-cans/

  9. This is awful but unsurprising. Komen defined breast cancer as being “pretty in pink” and for thirty years described it as cute and ribbony, and cured if found early enough. Survivors can’t look sick or like they are struggling, that doesn’t fit in with their mission. As a woman living with metastatic cancer, I know all too well that we are not welcome in many places and that our viewpoint is unwanted. Support groups are not for us, they are for early stage women whose concerns are not ours; pink races are all about living past breast cancer, not dying with it. Komenites can’t have their message damaged by the truth – that cancer is hard and ugly and many of us will die from it. I am sorry for your experience but I hope that others will learn from it. Research where money goes before you support a group – if curing cancer through research is a goal, than you have to wonder if Komen is where your money should go. As for your question, I don’t define myself as a survivor because I will not survive this. I am living with cancer. Good post, glad I found you!

  10. Christina Mills

    I am a woman living without cancer today….tomorrow is another day. Call me superstitious but I never use CANCER and CURED in the same sentence. I celebrate today as a gift and am thankful for all the the happy tomorrows I’m blessed with.

    I find Komen’s attitude deplorable, my heart is heavy that Donna or any Mets patients would be treated this way. God bless you and your courage, Donna. I would have loved to have been there to cheer you on!!!

  11. Cheers to you for walking and walking proudly with your walker! I would have been outraged. I have recently finished treatment for Stage 1 breast cancer and the treatment itself didn’t kill me but that doesn’t mean I am any less of a “survivor” that the three friends I had that passed away from breast cancer in the last year. Keep your faith – things like that just show other people’s ignorance and lask of compassion.

  12. Jacqueline Jagerson

    Bless you for your courage and your wonderful example to many of us who are survivors. I would say that you definitely are a survivor and hope you will continue to be one for many many years to come.

  13. Like Sandy, I see myself as a “thriver”. None of us has certainty. As pointed out, the only thing separating those of us in remission and those at stage IV is a scan, a symptom, a mammogram, a biopsy and suddenly we are both staring down metastatic cancer in the face. I have known women who were stage 2 at initial diagnosis, like me, node negative, same grade, same surgery, same chemo, and BAM! Mets struck her and not me. Not yet, thankfully. This is not the case of the haves the have nots. Them against us. Yes, our immediate concerns are different, and yes, maybe those with stage IV, as Elizabeth Edwards once said, know what they will probably die from, yet in the big scheme of things we are ALL terminal in this life and just because we have been in remission thus far, we do not have a secured future of being cancer free from here on out. Komen would do well to embrace all stages of the disease. More than anyone, they should know the very thing we all fight to prevent, to treat, as their own namesake died of this disease and she would be appalled that stage IV Thrivers are not recognized. Indeed they should be ashamed.

  14. Donna,
    I am so sorry and dismayed by the manner in which you were treated.
    In truth, I knew nothing of metastatic breast cancer and not a whole lot about social media until I happened upon a TweetChat at #bcsm one Monday evening a few months ago. I would probably still be unaware of the truth about cancer were it not for that online conversation. It forever changed the way I think about and speak about breast cancer. So along with Nancy and Brenda, I will be sharing your story OUT LOUD.
    To answer your question about labels, I suppose I’m going through my own identity crisis. Right now, I am living with breast cancer that is more “socially acceptable” kind. Based on how I look (I guess), I’ve had people reassure me that they know I’ll be just fine. I’m not sure what they would say if they thought the opposite, but clearly there is a perception around surviving, a mythology, that has been perpetuated, chiefly, by Komen. I bring my own baggage to the conversation about “surviving.” First, I see myself as an immigrant. I frequently get lost, say the wrong thing when I worry out loud about progression/recurrence/dying as I navigate my way through cancer country. Too, growing up in Northern Ireland, I can’t help but see parallels between avoiding the horrible reality of metastatic cancer and avoiding “the troubles” that plagued my country. The language of detachment is very similar. I wrote about it here:

    http://timetoconsiderthelilies.com/2012/06/03/he-not-busy-being-born-is-busy-dying/

    My best to you, Donna. I am in your corner and telling your story.
    Yvonne

  15. Elaine Mercado

    So sorry for what happened to you at Komen. Morally reprehensible.
    I was diagnosed in Sept. 2008 and never feel like I am guaranteed a life without further experiences with breast cancer. Any stage can recur and this unnerving truth makes the Komen crew very uncomfortable. I posted your piece on Facebook, and try to do my part to educate people about the pink problem. Blessings and peace to you.

  16. Hoping over here from Brenda’s blog….and I am so sorry that you were treated in this way! In my book–you are a survivor!! I believe that all who are challenged with the cancer diagnosis are by definition a survivor! You go girl! PS. It does make me very angry that anyone would treat you this way! How sad…

  17. Donna – this is so sad, heartbreaking in fact – it should’t matter whether someone is NED or living with disease – the reality is that anyone going through the hell of breast cancer (both the disease and the treatment) deserves much better than that. Congratulations for holding your ground and walking in the victory march. We’ve spoken quite a bit about labels and how the words mean different things to different people. Some want and like them, some most definitely do not. To each her own!

  18. Donna,
    Big love to you… I left a comment when you first posted …. maybe it’s in WordPress spam hell…

    Anyway, my sweet, dear friend….. You know I stand beside you and that I shall ALWAYS be beside you.

    xoxoxo

  19. Donna, You are a magnificent lady. I can’t find the words to describe how I feel about the Komen people & the American Cancer Society (well, I could, but with much profanity.) After I had a prophylactic double mastectomy in 2007 (without reconstruction & without support from my now ex-husband,) I contacted the ACS for info about support groups for breast cancer survivors; they told me that since I never had breast cancer that I was not a survivor..no groups for me. Medicare was never billed for the surgery, so when I bought prosthesis & bras I got a statement denying coverage, because according to their records I NEVER HAD A MASTECTOMY! I’m still at risk-have to be examed by a health-care professional every year. Thanks to Brenda Coffee, I learned that I am a “PREVIVOR,” & found Sue Friedman & FORCE (Facing Our Risk of Cancer.) My sister (a breast cancer survivor, & a carrier of gene mutation like me) told me on Saturday that our cousin Matty (a MAN, my age-61, just had a double mastectomy; he has a mutation in the BRCA3 gene; something we had never heard of..maybe they keep it quiet because men with breast cancer must be kept hidden, right? He’s a lawyer, married with children. The only good thing to come from this is that our younger brother Charlie is now going to get tested..he also is married with 2 children.) The next time any organized event tells me that I’m not a survivor (I’ve never been to one yet, but October is coming up), I’m going to lift my shirt and invite everyone to take pictures as I say LOUDLY that I AM A SURVIVOR EVEN THOUGH THEY CLAIM OTHERWISE. Morons. I am Jewish, & the next time I go to Shabbat services, I will say a special healing prayer for you along with the whole congregation, & I will say it today here in my home. I’m new to Facebook, so I hope you get this.. :-]
    Shalom, Marion

  20. Pingback: Cancer Changes Everything « Being a Beautiful Mess

  21. I hope you contacted the Komen Affiliate to let them know. Since the races are run by volunteers it is possible that the volunteers were not properly educated on “survivors” – you certainly quailfy as that and so much more. Let the Komen staff know so they can address it and make sure it never happens again to you or anyone else.

  22. Dear Donna,
    I met you at the Race in 2010. One of your co-workers told me your story and introduced us. I watched you walk the entire distance around Dodger Stadium. You were a great inspiration to everyone on that day. I’ve never forgotten you Donna.

    I’m the chair of the Survivor Experience at the 2013 Race. Will you help me make that survivor experience more all inclusive, so greater awareness is created for the on-going struggle that survivors with mets endure?

    Sharon Schlesinger
    2010 Race Chair

  23. Shelby Terstriep

    You are the absolute definition of survivor. I am the medical director of a survivorship program. What an aweful experience!

  24. Donna, you were treated terribly at the Komen event. I agree with Dr Attai about the labels and to each his or her own wishes about what words or label works best for them. I am shocked that you were not treated with the incredible respect that you deserve. Going through breast cancer treatment at any stage is no picnic but especially with when you have mets, you deserve extra special treatment in the breast cancer community. Every oncologist, patient advocate, breast cancer patient, caretakers and anyone who cares about cancer knows that we must work hard to find a way to end or reverse mets, so our sisters, brothers, daughters, sons, don’t have to go through what you are faced with. I can see why you didn’t want to tell your group that generously gave money to help breast cancer. That’s where so many of us feel betrayed by Komen. At least you know in your heart you deserve much better, and I applaud you for writing and exposing the truth about the way you were treated. That should never happen to anyone with mets. Thank you for sharing this with us.

  25. Hi can anyone ever email me or message me.. i feel really down my names Wanda

  26. I do call myself a “survivor” (when pushed) only for the lack of a better word. I tend to say I am “surviving”, or an “IBC chick” (my favorite) because to say you are a survivor has a “been there done that” feel to it, like you are not l
    iving with cancer, it is behind you. IBC and for those who have stage four bc, it is never behind you

    Hope Always,
    Terry Arnold
    IBC Chick and founder, the ibc network

  27. What a sad day when breast cancer advocates shut out one of their own in an effort to project hope. You’re a survivor in anyone’s book.

  28. Good post. I learn something new and challenging on
    websites I stumbleupon on a daily basis. It will always be
    helpful to read articles from other writers and
    practice something from their websites.

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