“October” is a loaded word for breast cancer survivors. On one hand, the crisp fall encourages a warm blanket or hot toddy with friends. On the other, the onslaught of pink is enough to make any breast cancer survivor want to hide under the covers.
My hope is that Young Survival Coalition (YSC) can offer something TO DO this October that will actually drive REAL CHANGE.
Recently, I have had the honor to work with Dr. Susan Love, a pioneer in breast cancer research and now a cancer survivor herself. As a result of my conversations with her, I have been thinking a great deal about the “cost of the cure” or, more frankly, the awful and sometimes unspeakable side effects of cancer treatments that we accept as the price of survival.
Dr. Love and I have spoken at great length of the importance of changing the way studies are conducted and the fact that we shouldn’t ignore the consequences of today’s cancer treatments. Since young breast cancer survivors have to live with the long-term effects of treatment decades longer than their post-menopausal counterparts, she stressed to me her desire to study and learn from them, which thrilled me.
As Dr. Love and I continued our discussion, the idea of collaboration bubbled to the surface. We pondered how, during the past 30 years, the larger breast cancer movement has become fragmented. I conveyed to Dr. Love my aspiration for “real collaborations” that can drive “real change” — and my personal belief that this is possible.
As I thought about Dr. Love’s groundbreaking study and its possible impact on all young women with breast cancer, I decided this initiative was the right thing for YSC to get behind. My hope is that a true partnership that will bring the breast cancer movement back together, but first, and most importantly, I needed to ensure the proper crowd sourcing, so young women’s perspectives are captured in the research.
Tell Dr. Love everything that sucks about being a young woman with breast cancer here:
A few days later I was ecstatic to hear Dr. Love had reached out to the national headquarters of Susan G. Komen to see if their team wanted to join us in a joint collaboration …. Komen said yes!
This partnership creates enormous opportunity for the HOW study, especially when you consider Komen’s international reach. But, in all candor, it also raised concerns for me about how a partnership with a massive organization like Komen and an organization of YSC’s size would materialize.
The possibility of joining forces for a greater impact was too strong to resist, and I agreed to do everything in my power to make it work. “Working together” is not a new concept — far from it. However, when an industry or sector becomes as segmented and spread out as breast cancer has — working together can be complex.
I am so pleased to report that the collaboration that formed between Komen, Dr. Love’s Foundation and YSC has been transparent, equal and respectful. Each organization is making this partnership a priority, and I am proud to be blazing forward on this new found path. We are openly talking about how our collaboration might serve as the cornerstone of best practices within the whole breast cancer movement.
As cancer survivors ourselves, we believe it’s time for the cancer community to no longer accept just being “happy to be alive” and instead demand treatments that do not have such a high price. It is my belief that we can make that happen — if we all work together.
As the CEO of the largest and most influential organization that supports YOUNG women with breast cancer, I am honored to work even harder this October to show the world that breast cancer organizations can work together to drive change and accomplish great things for the broader community.
To learn more about YSC’s partnership in this important study and get involved, please visit: http://www.youngsurvival.org/HOWstudy.