Komen Shuts Down Other Opinions

from politico.com

Yesterday I wrote about my utter astonishment in the “Singing Mammogram” released by Komen. A quick read of Twitter, as well as comments on my blog, suggest I’m not alone. In fact, it would seem that enough people offered negative feedback on the YouTube page that Komen has turned off the comments.

As the president of another breast cancer organization, I readily recognize that not everyone will agree with me, or with our organization’s take on the issues. I know that there are many opinions. I also know that I’m pretty strong in stating mine. I don’t tell people that they were wrong, but rather that I disagree. I don’t eliminate opinions I disagree with. And I most certainly never, EVER, no matter how confrontational or oppositional a comment, fail to invite open discourse on my blog.

As amazed as I am that Komen approved such a demeaning and sexist video, I’m even more amazed that they have sought to avoid dialogue by simply ignoring the voices of anyone who doesn’t support them.

Is this really how a leading breast cancer organization should behave? How will shutting down our voices lead to “the cure?” What say you?

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Dear Ms. Robach

An open letter to Good Morning America News Anchor and breast cancer “survivor,” 

Ms. Amy Robach

 

Dear Ms. Robach,

What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!

It ends up we have quite a bit in common.

  • Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
  • Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
  • Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
  • Like you, chemobrain persists.

It seems we have some differences as well. More

OUTRAGE!

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In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

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#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

NaBloPoMo 2: A New Low in Pink

I know, it’s supposed to be over. But anyone living with, or loving someone with, breast cancer knows it’s never over. Pink-tober may be more offensive than the other 11 months of the year, but breast cancer is always around, whether it’s front and center, or lurking in the dark.

November is always a relief for me. I am happy to hand the pink spotlight over to the Movember crowd and just crawl into a hole for a while. But on the VERY last day of October, THIS was brought to my attention. (You have to see it to believe it!) Pink Lemonade Spot

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The Antidote to Pink Fatigue

© Pam Stephan

October tends to be a stressful month for me. School is back in full swing with a panoply of activities requiring my chauffer skills. My program year at work begins in earnest, interrupted – good and bad – by a series of holidays. While I enjoy the celebration, the office closures don’t seem to change the work demands.

And then there is PINK.

It’s hard to explain why, as a women living with metastatic breast cancer, I don’t jump on the pink bandwagon.

It supports me, right? Well, no. Wrong. Remarkably wrong.

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Pink Responsibly 2.0

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Just as Thanksgiving starts in October, and Christmas at Thanksgiving, Pink-tober comes early this year. And I, along with a rapidly growing group of irritated survivors, am dreading it.

It’s hard to explain to people who don’t see how belittling the “pink party” can be, but I’m going to try.

If you read my post about firefighter Janette Neves Rivera’s plight to utilize the sick leave proffered by her colleagues, you’ll start to see what I mean. It is easy to think that the “pink awareness” culture surrounding breast cancer is, at worst, harmless, and at best a way to fund research for a cure. Neither is true…

Harmless?

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Lives v. Profit

The ever-widening rift in the breast cancer community troubles me. On one end of the divide are women, some of whom are living with or have already survived a bout with cancer, and who live with the fear that it will reappear as a deadly metastatic diagnosis. With them stand millions of women who know it could be them, and want nothing more than to do right by today’s survivors, and protect themselves and loved ones from ever facing breast cancer.

At the other end of the spectrum are the movers and shakers of the breast cancer world…the organizations and people who use this disease to either turn a profit or control the pink-ribbon funds raised based on their own agendas. More than more, they seem to seek to drown out the voices of survivors and, with smoke-and-mirror tactics, manipulate emotions to increase sales.

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