It has been an incredible few days at this year’s National Breast Cancer Coalition (NBCC) Advocacy Summit. From meeting wonderful “virtual” friends at last, to briefings on the cutting edge research and progress toward Deadline2020, both my heart and mind have been expanded. Tonight is our annual celebration, and tomorrow we will be on Capitol Hill making our final push on behalf of both “The Accelerating the End of Breast Cancer Act” (HR 3067) and continued funding of the Department of Defense Breast Cancer Research Program. Overall, I have to say…it’s been AMAZING.
Nothing is simple. Last night there was a meeting of women with metastatic breast cancer. It did not rise to the level of a scheduled session, but rather was a “meet-up” held after the official day was over, and organized by…well, I’m not quite sure who organized it. It was a little disorganized.
The first thing that struck me was how young we were. Of the 30 or so women, and one man, I’d have to guess that 25% were under 50. That alone was devastating.
Next, one young woman rightly posed the following question: If NBCC priorities are focused on the prevention of breast cancer and the prevention of metastasis, where does that leave us? She was sweet about it. I am pissed about it! It leaves us dead. We have been written off by those should most support us. The truth is, I’m not quite sure WHERE we stand within NBCC, but I do know that the language currently used is, at best, alienating – and at worst, down-right insulting. Or destructive… Or offensive… Or all of that. And I love NBCC, what it does and how it does it. It is important and impactful. But women living with mets are marginalized, and it’s time for that to end.
It is an odd thing to be live with life-threatening, incurable metastatic breast cancer, and be marginalized within the breast cancer community. I don’t ever forget that I am the “worst nightmare” of women who have or had breast cancer; my life is their greatest fear. It makes sense that keeping a distance feels safer.
Urged in one session to find my “sound bite” I came up with this: “I am 45 years old, I have metastatic breast cancer, and there is no cure.” Seems to me that might just launch an important conversation with anyone, including our elected leaders, about the importance of what we do. What women, what organizations that support women, what national breast cancer groups fail to see, however, is that WE are their greatest asset. WE are their rally cry. WE are their best argument for the funding and support they seek.
To add insult to injury, there is remarkably little support for MBC in this country. 30% of women with breast cancer are likely to become metastatic, yet according to Metavivor (the ONLY organization to focus on MBC research), only 2.5% of funding is funneled into mets research. Of course, one must acknowledge that women with mets are often urged into clinical trails for new drugs. What is less well known, though, is that most of those trials are for drugs to prevent or treat early stage disease. We are, in a painfully real way, the human guinea pigs, used to save the lives of others.
ON THE OTHER HAND…
This is the first year I’ve attended the conference as a woman living with MBC. I know I upset many women when I tell them that until you are LIVING with mets, you can’t truly UNDERSTAND mets. For some it is as if I am accusing them of being insensitive. For others, they feel it is a competition…that I am trying to claim a more “true” or “real” cancer. It’s not that at all.
Within our #bscm (Breast Cancer Social Media) twitter community we have begun using #FearlessFriend (btw, the “#” flags a searchable term on twitter) to indicate those among us who are prepared to stand by their friends with metastatic breast cancer, despite the high chance of losing them, despite knowing that they can’t ever really “know” what living with mets means. These are women and men, doctors, survivors and friends, who just want to BE with us while we are BEING.
I am the first to argue that nothing is simple, and the world exists not in black and white, but in shades of gray, and their are two sides to every story. That’s good…it keeps us honest and our advocacy clear. But I feel strongly it is time to demand that our voices are heard, and our lives are honored before we die…let us lend our urgent voices to the dialogue.