Last month, I wrote a post in recognition of Metastatic Breast Cancer Awareness Day. At the time, I was feeling a little betrayed after reading an article by a fellow metastatic survivor about the National Breast Cancer Coalition’s goal to end breast cancer by 2020. As she stated, their primary goal is to find a preventive vaccine and secondary is to determine the cause of metastatis. Down the list (#4) and “most difficult” was finding a cure for metastatic breast cancer. I took that to mean that metastatic breast cancer is a lost cause. We’re all going to die, so let’s focus on prevention. I even put a little snarky remark in my post: “Believe me, I would love to have a vaccine that would ensure my daughter will never have to worry about getting breast cancer, but I want to be here with her to see that day.”
To be fair, I contacted Laura Nikolaides, NBCC’s Research and Quality Care Director, with my concerns. We had a nice email conversation and I did some more research on NBCC’s position on metastatic breast cancer. Here was her response:
We set a mission to end breast cancer with our founding in 1991. We’ve tackled that in many ways, including bringing over $2 billion dollars to breast cancer research (most of which is directed at treatments), working on a clinical trials initiative to make sure the right clinical trials are done, and that women get meaningful answers. We were instrumental in accrual for Herceptin trials of metastatic women, worked on Avastin, and now on TDM1 and training women to be advocates through Project LEAD. We continue to do all of these things for women with breast cancer.
We are about ending the disease for all women. Period. In 2010, we felt frustration that not enough progress had been made to END the disease, so we set a deadline and are trying to focus on areas that aren’t getting attention that would help end the disease. The billions of dollars from the National Cancer Institute, Department of Defense and the pharmarcuetical industry is almost all being used to find drug targets. We want some focus on prevention and on stopping the process earlier on so women don’t have to get the point of taking drug after drug with toxic side effects. Of course we still need people looking for more of those drugs, but that is what the current system is doing!
We are just trying to bring some resources to areas that aren’t getting much attention that we feel will end the disease for our daughters. We continue to develop new programs with our very small staff and limited resources, including programs to bring people together to understand metastasis from new angles and new approaches, which we are organizing for 2013.
NBCC began this focus on understanding how to prevent metastasis with the Summit on Prevention of Metastatic Breast Cancer, held August 26-28, 2011, in Aspen, CO. Their website noted that only a fraction of breast cancer research is focused on how metastatis occur, and ultimately, how to intervene and prevent it. NBCC gathered a diverse group of breast cancer advocates, scientists, and clinicians from across the United States, Canada and Europe to begin to outline a research plan of action.
So I did feel better after learning of this and glad that I donated money to NBCC in the past. I realize organizations cannot tackle everything, and I admire NBCC’s focus and drive to end breast cancer despite limited staff and funding. Perhaps finding the cause of metastasis will lead to a metastatic cancer cure someday. And it would be my dream to know that my daughter, now 13, would never have to worry about getting breast cancer.
We have a lot of work to do to make that happen by 2020. With the election over, we can send a message to President Obama asking for his support. To do this and learn more about NBCC’s work, go to http://www.breastcancerdeadline2020.org/ .
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