Below the Surface of “Awareness”

It is Pinktober.  Again.  Last year, I wrote a scathing criticism of breast cancer marketing, and to date that piece has over 1.3 million page views.  That so many people read it, and are still reading and sharing it over a year later, tells me I’m not the only one who feels whored out by marketers using my terminal illness for their financial gain.  

Instead of feeling grateful for those pink-ribbon-stamped eggs, I feel vulnerable.  Every pink balloon, pink ribbon, pink piece of cake, pink-capped water bottle and pink fracking drill bit stand for my vulnerability, writ large.  I can’t buy eggs, I can’t go to work in October, I can’t go to the mall, I can’t drive down a highway without having that vulnerability shoved in my face.  And it wouldn’t bother me if I felt it was genuinely to a good end. I am not convinced it is.

The number of women and men dying of breast cancer deaths per year, approximately 40,000, has been fairly stagnant since at least 2000.  Thirty percent of people diagnosed with invasive breast cancer will eventually die of metastatic breast cancer.   You might be surprised to hear that the numbers haven’t changed, because The American Cancer Society & Komen tout the great strides in the reduction of deaths to breast cancer.  It’s a numbers game.  Because of increased awareness, more women are getting mammograms. Consequently, the rate of women getting diagnosed with breast cancer has increased.  

But, and this is a big but, the increase is largely due to the increase in diagnosis of Stage 0 cancer, or ductal carcinoma in situ (DCIS). This differs from invasive ductal carcinoma (IDC) because “in situ” means that it has not invaded part of the breast outside the milk ducts.  And it may never invade and turn into IDC.  The diagnosis and treatment of DCIS is controversial, and more work needs to be done on the best research-based approaches.  What we do know is that in a large observational study done over a 20-year period, only 1% of DCIS patients developed metastatic breast cancer and died.  As opposed to the stagnant 30% rate of metastasis and death of patients with IDC and other types of invasive breast cancers.  The reason the death rates of those diagnosed with breast cancer to those that died have decreased is because the overall rates now include DCIS.  It’s not because fewer women, and men, with invasive breast cancer have died. They haven’t. The actual number of those dying is the same.  

There is a growing movement of women and men with metastatic disease (cancer which has spread beyond the breast and local lymph nodes), aka “metavivors,”  who are demanding more money for research into metastatic disease.  I am one of these women.  When I was still in treatment for my original diagnosis, I developed metastasis, “mets,” in my chest wall.  It is rare for someone to develop new cancer during treatment for old cancer, but there I was with a completely new tumor.  I had additional surgery, and even more radiation than the usual 33 day recommendation.  Consequently,  my prognosis was, and remains, tenuous.  There is no cure for ICD, or many other types of breast cancer, despite what Breast Cancer Awareness Month advertisers might have you believe.  There. Is. Still. No. Cure.

I have been racking my brain to figure out why there is this disconnect.  Why do we need to be deluded into thinking there is progress, when there is actually very little?  Why do non-profits like Komen and the ACS calculate statistics in a way that is misleading?  Honestly, I have no idea what the answer to that question is.  

Thursday, October 13, was metastatic breast cancer day.  Metavivors held a die-in on the lawn of the capital, and met with several senators about the plight of metastatic patients who are dying while research dollars are being disproportionately spent on primary disease treatment research.  Thirty-seven percent of the funds raised by Komen are going for “education,” and only 20% go going toward research.  As of last year, overall only 2% of research funds were going to metastatic disease, despite the 30% death rate of women with ICD.  Knowing those statistics and seeing nothing change felt like screaming into a void.  Thanks to some brave, outspoken women who are dying but still fighting for the lives of those that will follow in their footsteps, there is finally a changing tide.  Cancer Moon Shot 2020 will include research on metastatic breast cancer.  This is a huge acknowledgment that there is much work to be done in this area, and some brilliant researchers will now be empowered to do it.  

It remains to be seen how Komen will fit in with this new national awareness around metastatic cancer that is building.  There was a recent skirmish between Komen and some of the metastatic breast cancer ladies.  It’s weird to see that two groups who on the outside claim a common goal are clearly not working toward that goal together.  I have had conflicted feelings about Komen since 2010, when they got in bed with the fried chicken people who shall not be named.  My disdain grew when they threatened to pull funding used for breast cancer screening from Planned Parenthood, and then last year they did the pink drill bit thing and it was the end for me.  

Dr. Susan Love, author of The Breast Book, a bible of all things boob-related, suggested that Komen was moving toward more changing for the better.  I spoke with Andrea Rader, Managing Director of Communications at Susan G. Komen for the Cure.  She acknowledged they made some poor decisions in the past about partnerships, and they are being more thoughtful now.  They realize they misstepped with some endorsements which could have been perceived as making political statements, and they don’t want to do that.  Ms. Rader said we have to keep the conversation going, because it still matters.  She says the large education budget is relevant because people still think there is a cure for breast cancer, and because women without insurance and means still don’t know how or where to get mammograms.  They have shifted their research funding this year to 30-40% for metastatic research, and they are bringing more resources to the African American community, which has higher death rates than the average population.   

Komen shone the light on breast cancer in the 80’s, and made it a national conversation.  Survivors are now using social media to take the awareness someplace new.  We can show and tell you first-hand what having breast cancer looks like.  We can make it personal in a way that walking 3 miles in a pink shirt cannot.  We want to be seen and heard.  We don’t want to put on a happy face and go to fundraising events where we get called “victims” (that happened to me last year). We want more money for research for metastatic disease, because that’s what kills us.  We want to be able to get the scans, treatment and surgeries we need without having to constantly negotiate our survival with insurance companies.  We want you to know that we don’t want to die, and we are tired of pleading for our lives only to see a t-shirt at Target that says, “Keep Calm and Save the Tatas (as a response to Twitter backlash from survivors, Target has pulled the shirt.  Thank you, Target, for hearing us!).

 

This is my breast immediately following reconstruction surgery. Those stitches are holding transplanted skin from my stomach where my areola used to be.

This is my breast immediately following reconstruction surgery. Those stitches are holding transplanted skin from my stomach where my areola used to be.  I share this very personal photo because I want more real awareness for this disease.  It is not pretty.  It’s a hundred kinds of torture.

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