In keeping with my promise to be a Fearless Friend, I am reblogging an entry from the MBCN Buzz Blog. The Metastatic Breast Cancer Network. I had this blog planned because I think the message is important. And then, it became personal again.
Last evening, I was at an event on behalf of Army of Women. On the way home, I received a text message from a dear friend. Her sister has a recurrence and it’s likely NOT local. In other words, metastatic. I am sickened over this. We really MUST change the conversation and we MUST get the right research funded and get the studies filled.
Times are tough, finances are tight everywhere but one thing we can do each day is cast our votes for METAvivor at The Pink Well. Each Day. Every Day. While the reblog below is from MBCN which is a different organization, they are not in the Pink Well "contest" .... And I am sure they would support all votes going to METAvivor. They fund research.
Coincidentally, the Monday night tweet chat was about Metastatic Disease. The chat is referenced in the comments so I am providing a link. OR, if you are not a twitter-er..and you would like to see what a tweet chat looks like, here is the link: BCSM Chat March 19
Metastatic cancer is the cancer that kills. The numbers remain unchanged despite decades of "research." Metastatic patients are "inconvenient." They taint the pink ribbon and its symbolism of ummm, I'm not sure what? Hope? Victory? Surviving thanks to the same barbaric slash, burn, poison treatment that's been around forEVER. We've gotten better meds to control the side effects and we've perfected surgical techniques.
We've come to accept Detect and Fix. Why is this okay? Why aren't we screaming that we are NOT happy. That we have SO far to travel. Early detection so we can make horrible choices like amputating body parts, poisoning our bodies, ceasing hormone production so we can age rapidly inside and out? NO. This is not okay with me. Enough is enough.
How about, PREVENT and toss all the detection tools into a junk heap. Surely, our sisters with mets feel like they are as insignificant as that pile of junk. That has to change. WE have to change it. WE can't be thrilled about our own good fortune-existence in the Land of NED while others are waiting for the next big thing... the thing that will stop the progression of their cancers, that will eradicate what is left in their bodies, that will save their lives.
Do you remember that commercial with Lynn Redgrave? "I want to die from eating too much chocolate, I want to die from........ but I REFUSE to die from breast cancer." Diagnosed at 60, dead at 67. And it wasn't the chocolate. Research, Research, the RIGHT Research.
And now, the blog as it appears on the MBCN website:
I am so tired of celebrities putting a happy face on breast cancer.
A Letter to the Editor of US magazine:
It is wonderful that Guliana Rancic has a positive, uplifting story to tell. But unfortunately for us, it isn’t all pretty pink ribbons and cures. The celebrities that fight breast cancer and win are the public face of this disease. We need a platform to educate people about the progress that has not been made in finding a cure.
A lump in the breast does not kill anyone. When breast cancer cells travel or metastasize to another part of the body—usually bone, liver, lungs or brain—it is incurable. Those of us with metastatic breast cancer aren’t and will never be the survivors. The cure has eluded us.
Much has been done in the areas of prevention and early detection and that is wonderful. It provides women with more choices in their treatment. Although people think we have come a long way, 40,000 people will die of this disease this year.–just as many as in the year 1995. Yet, less than 5% of research funds go towards metastatic breast cancer.
Many breast cancer organizations don’t recognize those of us who are living with stage IV breast cancer – they serve the ‘survivors’. We are scary to them and we are pushed into the shadows.
We need government and private research funds to find treatments to extend our lives. We need for everyone, including the breast cancer community, to be aware of us.
The Metastatic Breast Cancer Network, mbcn.org, is made up of all metastatic women. We are all volunteers and are unpaid, and we are passionate about helping each other and advocating for our disease. We are desperate for our story to be told.
Deb Tincher
Hamilton, Ohio
MBCN Board member
23 Responses to I am so tired of celebrities putting a happy face on breast cancer.
I have watched many lose their fight with breast cancer. No known cause, no way to prevent it still after all of the research and money spent.
Celebrities that gush over how lucky they are and make it seem as if B.C. is nothing have not a clue.
MBCN board member Deb Tincher is glad Guliana Rancic shared her uplifting breast cancer story in US magazine. But she reminds us that celebrities with early stage breast cancer are not just like US. “I am so tired of celebrities putting a happy face on breast cancer,” writes Deb.
Me too.
From the reading I’ve done on breastcancer.org ,there isn’t anyone who can be sure they are “cured”,even after many years.
Elizabeth Edwards was the most visible face of metastatic breast cancer–she was honest and accurate in her comments about the disease.
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Nan LaGow
MBCN
AnneMarie
My intention was not to minimize primary breast cancer–I was there for 12 years–but to emphasize how much we are ignored or forgotten. Thank you so much for reposting and blogging. We need to keep pushing for our voices to be heard.
Deb
MBCN