© 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.
They say your message should be no longer than the average elevator ride. So when given the opportunity to educate, here’s my shtick (3 of them actually…or one if I’m headed to the top of Sears Tower):
PINK PURCHASING:
Most pink marketing is manipulative at best, deceptive at worst. I advise “PINK RESPONSIBLY.”
Ask yourself: HOW MUCH is GOING WHERE to do WHAT?
If the label answers your questions, terrific! If not, move on and feel good about leaving the pink crap at the store.
Want to make a difference? Send a $5 gift, or give a $5 gift card to a LOCAL charity providing direct service.
AWARENESS/EDUCATION:
You would have to be living under a rock with a command of nothing but Aramaic to be unaware of breast cancer. It is the most over-marketed disease we have. And yet we know so little! (In fact, I’ve encountered breast cancer survivors themselves who don’t understand the critical distinction between early stage and metastatic disease.)
Approximately 30% of women with breast cancer will eventually, if not initially, have metastatic disease.
You don’t die of early stage breast cancer. Period.
Metastatic breast cancer in incurable.
Yes, breast cancer is treatable. Yes, our odds are improving. And yes, we have pathetically failed at the REAL education agenda!
METASTATIC BREAST CANCER:
In the end, it comes to this: people die from mets. While research to treat early-stage disease and to prevent breast cancer is crucial, we are still not saving lives! We MUST turn our attention to metastasis. It is not pretty, it is not optimistic, and it sure doesn’t get wrapped up in a pretty pink bow. It is easier to bury our heads in the sand and pretend that Pink-tober is making a difference. But, if we want to save the lives of our mothers, sisters, wives, daughters, friends and lovers, there is only ONE way to do that.
One might argue that the biggest bang for our buck would be to focus ALL our resources on metastatic research. Success would turn breast cancer into a treatable, survivable, chronic disease.
But that’s not what we’re asking. We’re asking for equity: 30% of the funding for the 30% most likely to die from this disease.
It is so hard to reduce this disease to soundbites, but the truth is, it is sometimes all we have. So these are my talking points. I would love to hear yours!
(Oh, but before you comment, be sure to support METAVivor – tweet or FB #MBCAware to secure another $1 for their important research grants!!)
regrounding 
Oct 28, 2012 @ 16:34:19
It’s unfortunate that there has to be an “us and them” mentality among those diagnosed when discussing breast cancer. I think it’s all “us”. I completely support METAVivor and I am so glad to see that they, and organizations like them that bring awareness to the real need in breast cancer research (more stage IV research), are being moved to the front lines so change can occur. Awareness is the first step in real change. It’s very exciting for me to see the very real shift by the public in their sentiment, from the mindless purchasing and waving of pink ribbons, to the demand for real, solid answers from those who raise money in the name of “research”. I am definitely seeing it this year with more people looking to donate to local charities vs mega ones.
Unfortunately for Komen, but fortunately for us, their difficulties are leading people to question how donations are being spent, and that is leading them to web sites and blogs like yours where the facts of metastatic breast cancer are there in black and white, not pink. I see a definite shift in the “pink party atmosphere” to one that’s more serious, and rightly so.
You say Metastatic breast cancer is incurable. In reality, all breast cancer is incurable. People are always a bit shocked when they say to me, “So, you beat the breast cancer! That’s great!” and I say “The only way I can truly say I beat breast cancer it is if I die of something else.” People don’t understand that. It will take time for people’s attitude to change because of the way, in the media and in fundraising, it’s been presented to them and drilled into their brains and because of how the term “survivor” is used.
“Survivor” means many different things to different people. I would hope that those who have been through treatment, and want to call themselves “survivors”, if they choose to do so, would be able to do it without judgement. To the public, it may look like they are saying, “whew, glad that’s over” but in reality to someone that calls themselves a survivor , it may mean living in the face of adversity, living despite adversity, living to spite adversity.
Thanks for providing a forum for this topic to be discussed, as discussion encourages sensitivity and understanding, and hopefully that will bring us all together in a mutual circle of respect and ultimately drive the demand to successfully treat metastatic disease once and for all.
Oct 28, 2012 @ 16:38:12
Lori, this is very well written and says it loud and clear. Thanks to you I clicked on METAVivor and saw a great video by Metavivor at http://youtu.be/Hx2u_oNgQGg. I am also glad I clicked again as I have been doing everyday in October on Metavivor to keep raising money.
Oct 28, 2012 @ 17:09:56
Lori, thanks for this sobering education. We all need to be aware of the statistics, and support the causes that will make a difference. xo
Oct 28, 2012 @ 19:36:57
Thank you for writing this Lori.