How Komen Must Change to Get My Support, Part 1

Here I go, you guys. It’s time I explained in detail what’s wrong with Susan G Komen For The Cure, and what they’d need to do differently to get me to support them. This will be a series of posts, because I want to write comprehensively about each issue I’m raising. I’m ready for the angry responses from Komen supports, and from metsters who think I don’t go far enough. And I hope I’ll see responses from anyone who sees errors in the facts–I pledge to change anything that people find a documented source that contradicts what I’ve written. Alrighty, let’s get started: today’s post is about the Komen-driven narrative that trivializes breast cancer.

I’ve said many times that the narrative of our existing breast cancer awareness treats a breast cancer like a sorority. The hazing is treatment, and once that’s done, you get to join the sorority and attend its parties that feature pink feather boas and dance music and dogs wearing bras, and your life goes back to being just as awesome as it was before cancer, or maybe even better, because now you’re in the sorority. And no breast cancer organization has done more to promote this narrative than Komen. Just look at their marketing materials and their Twitter and Facebook feeds. 

A problem with this narrative is that it excludes many people who get breast cancer. For starters, there’s men. Yes, men get breast cancer–not as often as women, but they do, and they die from it just like we do. It’s extremely rare to see men with breast cancer in any Komen materials. In addition, until very recently, metastatic breast cancer, which is what killed Susan Komen, was only minimally included in Komen’s materials. I acknowledge that they have made some strides in this area over the past year–kudos to them for featuring my friend Mandi Hudson of Darn Good Lemonade, for example–and yet, the metastatic experience is still too often drowned out by the sea of sorority party photos. Women and men with metastatic disease stay in treatment/hazing for their entire lives, which are most often tragically too short; we don’t get to join the sorority party.

And even for those women whose cancer treatment DOES match with the no-recurrence narrative, the picture of everything being awesome once treatment is over may not be their experience at all. Take my friend Natasha from Strings of Clarity, for example. She had Stage I cancer, so she should be living the pink dream now, right? Wrong. She’s dealing with serious psychological and emotional effects from her treatment and from the experience of facing her own mortality at age 37. The “you just get over it and move on” thing is the exact opposite of her experience, and she’s not the only one.

Which brings up another difficulty with the Komen narrative: that breast cancer is about sexy fun, which is obviousy false. There’s nothing sexy about having a breast cut off, and there’s nothing fun about chemotherapy. Ignoring the reality of cancer treatment and the physical and psychological damage it leaves in its wake does not help people with breast cancer. And hiding that reality behind pink bras trivializes it. The narrative has led many to believe that breast cancer is an easy cancer, one that nobody dies of anymore, one that doesn’t come with lasting scars. The sense that breast cancer is no big deal harms people with breast cancer because it allows vital resources to spent on pink parties instead of on desperately needed research into better treatments.

I have a lot more to say about Komen and that desperately needed research, but for now I’m going to pause this conversation here. I welcome your thoughts on the issue of the narrative of trivialization in the comments.

8 thoughts on “How Komen Must Change to Get My Support, Part 1

  1. EARLY ON, WHEN I WAS NAIVE ABOUT THE SMALL PERCENTAGES SALE OF “PINK” STUFF WAS ACTUALLY DONATED TO THE PATIENTS OR FOR CURES, I BOUGHT MY DAUGHTER A $500 PINK STAND MIXER TO THANK HER FOR TAKING CARE OF ME. I HAVE A HIGHLY AGGRESSIVE METASTATIC FORM OF BREAST CANCER WITH A VERY LOW SURVIVAL RATE SO I WILL BE FIGHTING THIS FOR THE REST OF MY LIFE! THERE IS NO AFTER THE CURE PARTY FOR ME, NOR SEVERAL OTHER WOMEN WITH INFLAMMATORY BREAST CANCER WHO WILL DIE WITHIN LESS THAN FIVE YEARS OF THEIR DIAGNOSIS! IN LESS THAN TWO YEARS MY CANCER HAS METASTISIZED TWICE AND I HAVE BONE, TEETH AND SKIN DAMAGES FROM TREATMENTS. MY MUSCLES HAVE LOST STRENGTH AND I AM PENNILESS, HOMELESS AND DESPERATE, WITH CONSTANT FEAR, DEPRESSION AND IM SO SICK OF LIVING OUT OF SUITCASES. I WISH I HAD THAT $500 BACK…I WISH SGK AND MANY OTHERS LIKE THEM WERE REALLY WHAT THEY CLAIM TO BE, BECAUSE WE NEED ALL THE HELP WE CAN GET!

  2. Hi Beth,

    I agree with your feelings when I see Komen revelers (?) whooping it up. I was in Atlanta last year on a business conference and discovered to my horror I was in the midst of their walk through the city. Women were wearing pink tutus and boas and drawing attention to themselves. You nailed it when you compared it to seeing a group of sorority sisters partying. It made me so sick with emotions, I had to find a restroom to compose myself. I really wanted to shout at them, “I AM GLAD YOU’RE HAVING A GOOD TIME BUT BREAST CANCER IS NOT FUN!!” I wanted to rip my wig and shirt off and say, “This is what BC does to you and I am one of the lucky ones. Why are you partying?” Even if some of those sorority sisters were BC survivors, please celebrate your accomplishment with more dignity. I had gone through a mutilating, painful AND numbing bi-lat mastectomy and 7 out of 8 chemo treatments at that point. I think getting back to life the best you can, hugging your loved ones harder, and taking time to appreciate the beauty in life, reaching out privately to someone you know is having a hard time; is more inspirational and educational than the equivalent of, “Look at us – we’re having so much fun!” When I was told that the mortality rate for my stage/grade of BC, after doing everything that can be done (bi-lat mastectomy/mutilation, 8 doses of chemo, 28 radiation treatments, oophorectomy, Tamoxifen for 5 years, etc.), was STILL 23% within 5 years; I was and still am gobsmacked! WTF?! It would appear to some that we’re taking our anger with BC out on Komen so I would point out that all of Komen’s assistance does not negate being insensitive and hurting those they proclaim to be helping. It’s like saying, “Here’s some BC awareness and assistance for you but let me punch you in the eye so it looks better.” I resent my illness being used for someone else’s benefit who doesn’t have cancer or will profit from it (Komen). I am not an interesting story or the answer to, “Guess who got BC?” so the story teller can be the center of attention while they describe my grueling situation or how much they’re helping me (Komen).

  3. I agree with everything your saying. I’m often asked if I’m going to do the breast cancer walks and my answer is always “no.” Mostly because of everything your saying. Number 1, I’m part of a club that I never wanted to be a part of and while I’ve met some great people this way, I don’t want to go out and celebrate that fact with witty t-shirts and pink feathers. I’m also experiencing major emotional trauma after this hell of a year, just like your friend. Life has not gone back to normal and I don’t know if or when it ever will. I was going to write my own post about this but I don’t know if I can write it better than you have. I look forward to reading the other parts.
    Carrie recently posted…Mommy Mondays: Bucket ListsMy Profile

  4. First, let me add, I agree with you on the overall sexualization of the disease and the over hype of “kicking cancer’s ass” which is a term that irritates the heck out of me. I too was diagnosed at Stage 1 and had a bilateral mastectomy. I did not have to have chemo or radiation, but I too am still dealing with the psychological after effects of breast amputation. Many people expect me to just “get over it”, and simply said, it just doesn’t work like that.

    To respond to your notions about Komen and the race, let me offer this: This past Saturday was the Race for the Cure here in Winston Salem, North Carolina, and I participated for the first time. While I wouldn’t call the atmosphere a “sorority”, there was something quite moving and emotional to look around the room at all the other women wearing pink survivor shirts. Please don’t discount the emotional support that exists just by looking at another woman and knowing she’s been through what you’ve been through. If I can help just one woman feel better and if she can make me feel better with just a glance, that’s something.

    Also, there are a few things you should know about Komen. The individual chapters of the Komen organization operate independently, much like a franchise, so before you make sweeping statements about where the money goes and how it is or isn’t spent, check with your local area chapter.

    In Northwest North Carolina, 87 cents of every dollar goes to the cause. Of that, 75% goes to local health organizations who provide diagnostic services, treatments, and survivor support. I was luck enough to attend the grantee breakfast last spring to see just where the dollars went, here, in our local area. The remaining 25% of our dollars go to national for research. In fact, we have two doctors here at Wake Forest Baptist Hospital who received a Komen grant, and are in phase 2 clinical study for a drug, Angiotensin 1-7, that is showing great promise at halting the spread of metastatic breast cancer. (http://www.wakeforestinnovations.com/discover-innovation/remarkable-new-cancer-fighting-discovery-wake-forest-angiotensin-1-7/)

    So yes, I agree with your overall feeling, but before you make sweeping generalizations, please get the facts from your local Komen office and I think you’ll find the help they provide far outweighs the imperfections of the organization.

  5. I certainly agree we need more research as to why it mets, I was dx 3 1/2 yrs ago , opted for bil masectomy , told I had a low risk for reoccurrence according to oncotype testing done , didn’t need chemo , just a pill, here I am 3 1/2 later with breast ca , called olio metastatic breast ca and this time had to have 4 cycles of chemo, which I’m having last one 10/1, then on to 5 weeks of radiation everyday, then a pill . I also agree at least for me that mentally all this has left me scarred more then the surg, you are never the same , it’s always on your mind, is this pain something and you are reminded everyday you look in the mirror, you try to be normal , but you are never the same. So yes we need to find out more about Why does it mets and what prevention can be done. As far a celebrating I do celebrate and thank god for everyday I get to get up in the morning and enjoy life, think that’s important for all of us!

  6. Beth, I live in New Bern and have been to several events that have honored you where you have spoken to the issue of lack of funding for metastatic breast cancer research. Your story is both heartbreaking and inspiring! I have many family and friends who have/are fighting this disease and have myself had a scare. I want to share with you that EVERY cancer journey is different and all are not encouraged and comforted the same as you well know. I have participated in several Komen events and though I understand that you may see lots of pink and smiling faces I encourage you to attend an event and then see if you feel the same way. Though I am an RN I was unaware of the prevalence of breast cancer in men. It was through Komen that I found this information and the link from mothers to sons. There are many husbands, fathers, sons and friends who participate in the events because it gives them a way to show love and support in a world they feel so HELPLESS in! They are there in big numbers, dressed in pink of any silly sort because laughter and smiles are hard to come by when you are in any stage of cancer fighting for yourself or loved ones!! Many that are undergoing second plus rounds of treatments are also actively out there living and fighting and gaining love and encouragement from the hearts that have come to support and cheer and encourage and LOVE. There are also those who are too week to be there but their pictures and stories are being shared. Believe me there is plenty of REALITY in every Komen event I have attended. Perhaps they could be a much better allie and would give ear to your, our and many’s concern that more money be allocated to research targeted at metastatic treatments and awareness. I have attempted to attach some helpful information below. We are all in this journey of life together. CANCER separates! Love and open conversation connects and heals souls. All bodies are temporary love remains.
    image: http://www.snopes.com/politics/graphics/komenchart.jpg

    While it may be true (or have recently been true) that breast cancer research comprises only a 21% share of Komen’s program expenses, citing that figure as a criticism of the

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    organization reflects a common misbelief that groups dedicated to addressing particular diseases (e.g., the Muscular Dystrophy Association, the ALS Association) exist solely or primarily to fund and direct research into curing and/or preventing those diseases. This perception is inaccurate: Komen and other groups like it have goals that include delivering a wide array of services to the communities they support beyond the funding of research, such as funding educational awareness and outreach programs, providing screening and diagnostic procedures, and arranging medical treatment and home care for persons currently living with those diseases.

    A more relevant metric for assessing a charity’s overall financial effectiveness is the percentage of the organization’s budget that is actually spent on the programs and services the charity delivers, and in this area the Charity Navigator charity evaluation site gives Komen an 83% rating.

    Regarding the seemingly excessively high level of CEO salaries at some charities, Charity Navigator advises that:

    While there are certainly some charities that overpay their leaders, Charity Navigator’s data shows that those organizations are the minority. Among the charities we’ve evaluated (those being mid to large-sized charities), the typical CEO’s annual compensation is in the low to mid six figures. Before you make any judgments about salaries higher or lower than that range, we encourage you to keep in mind that these charities are complex organizations, with multi-million dollar budgets, hundreds of employees, and thousands of constituents. These leaders could inevitably make much more running similarly sized for-profit firms. Furthermore, when making your decision it is important to consider that it takes a certain level of professionalism to effectively run a charity and charities must offer a competitive salary if they want to attract and retain that level of leadership.

    Read more at http://www.snopes.com/politics/business/komen.asp#EsSQI6CkwOPyDeKf.99

    1. That snopes piece is out of date. Komen now has only 2 stars out of 4 as its rating on Charity Navigator because of the way it handles its finances–compare this to other large well-known breast cancer charities like BCRF or Living Beyond Breast Cancer, who have higher ratings. I’ll be talking more in my next piece about Komen’s expenditures, and I encourage you to stay tuned.

  7. Beth, I am in total agreement with what you are saying. I am also one of those early-stage patients who never felt like celebrating, so in a way, I feel excluded too.

    Yes, there are many patients who seem to be celebrating “being done” with their cancer but I wonder how much information they know about what breast cancer really is. I hear many doctors don’t talk to their patients about the possibility of their breast cancer metastasizing, so in a way, there is some level of denial. To some, denial is a healthy tool but I find this approach to be risky. I guess what I am saying is, I find it difficult to believe that after knowing the truth about breast cancer, and after seeing so many people die from it, you would still feel like celebrating? It sounds like I am judging, but doctors have some responsibility about this culture too. I wonder, if every single patient knew the truth about their breast cancer, how many would be attending a “pink” celebration?

    I used to do walks because I thought the money was going into research. I was ignorant on this topic and I am aware MANY people are. My doctors did not talk to me about the possibility of my breast cancer metastasizing. I found out because I belonged to a forum with over 200 women and I started to read their stories, then it hit me — oh my cancer can spread even if my nodes are clear!, for example. There needs to be more of the right education, and maybe this would help shift the attention a little bit.

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