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Dear Fran Visco,
In response to the request you sent to me as a Project Lead graduate, to give my input to the 2016 priorities for Deadline 2020 (ending breast cancer by 2020), I reiterate what I brought up at Project Lead in 2009 … and what I have reiterated every year since. One cannot possibly talk about ending breast cancer without setting as a priority the extension of life, the enhancement of life, and the ending of death for stage IV breast cancer patients. There are three million survivors in the US. That is a HUGE number. Perhaps one-third of those are metastatic or will become metastatic and die. Why does Deadline 2020 ignore us?
While I have the greatest respect and admiration for what you have done with Project Lead and the Breast Cancer Research Program under the Congressionally Directed Medical Research Program, and while I respect the effort NBCC has put into prevention and early detection overall … and while I was glad to see those efforts ultimately extended to include the prevention of metastatic disease … I must nevertheless tell you that the Deadline 2020 goal of ending breast cancer in four years completely misses the mark by continuing to ignore the plight of those who have already metastasized. How can we have an end to breast cancer while people are still being diagnosed metastatic and dying of the disease?
We continue to loose close to 41,000 women and men annually from breast cancer – that has not changed. 30% to 34% of breast cancer patients continue to metastasize – that has not changed. Even stage 0 patients are metastasizing and dying. Patients 35 and more years out from their primary breast cancer are metastasizing and dying. The metastasis and death rate per 100,000 for women aged 25 to 39 has DOUBLED since 1979 (quadrupled in number) – a very serious and significant increase in death.
Breast cancer is not the problem. You lose a breast, you have a medical year to endure and life goes back to normal. I know I will take flack for this statement … but hey … while I sympathize that some people spend many years thereafter in fear of metastasis, the simple truth is that their problems pale when compared with ours. I and every other metastatic patient out there would trade places with these former breast cancer patients in a heartbeat – their odds of survival are 70% … ours are 1-3% … that’s a huge difference in odds.
The problem is NOT enduring a year of cancer treatment … the problem is DEATH from breast cancer. If you don’t tackle metastatic breast cancer… if you do nothing to prolong longevity, enhance quality of life and render metastatic cells dormant for those diagnosed with stage IV breast cancer … then you are doing nothing to make a real difference in the breast cancer world.
Face it … the biggest fear of breast cancer is not losing a breast … it is not undergoing chemo … it is not undergoing radiation. The biggest fear is DEATH. If you end death from breast cancer, then you have ended fear for the stage IV patient … AND you have ended fear for stage 0, I, II and III patients … AND you have ended fear for an entire population of undiagnosed Americans, who fear developing breast cancer and dying.
So my input for 2016 is this: Focus on making a difference for the stage IV community. Without such a focus you fail not just the metastatic breast cancer community, you fail everyone.
CJ (Dian) Corneliussen-James, Co-Founder
Director of Advocacy
METAvivor Research and Support