Positive Results Blog: Thinking about BRCA prevention 10 years after mastectomies

As we approach January 2017 I am approaching the 10-year anniversary of when I removed my breasts to prevent breast cancer due to my BRCA2 mutation (January 11, 2007). I am immensely grateful to arrive at this season fully healthy and having never experienced the cancer my mother faced when she was a decade younger than I am now. I am also grateful for the role that my BRCA mentors played helping me through that difficult time in my life. Those women who shared with me their experience of preventive surgery and let me see the results made me able to make that hard choice to remove my breasts to protect my health. Being BRCA is not a sisterhood that I would have chosen but I am immensely grateful for the friends that I have met along this path.

Thank you!

What is next?

Me, my husband and our sons in August 2016

In my family, the next generation is beginning to grapple with our genetic legacy. My sons and niece are now in or approaching their 20s and will soon need to decide on testing for our family mutation. While I certainly believe my choice to have surgery was the right one for me and I am grateful for my health, I remember before my surgery wishing there were other options. I also remember thinking that for the next generation, there would be. And yet, here we are 10 years later and women like us are still choosing surgery to protect their health.

I have done a lot of studying of what has made the greater breast cancer movement so successful in spurring new breast cancer research in the past three decades. The answer is actually quite simple: women banded together and 1) raised their voices to demand better surgery and treatment options, and 2) women banded together to raise the money to fund that research. This is something the BRCA community has really not done well. We have come together to support one another through our personal journeys and certainly there are far more educational resources now than there were 10 years ago, but we as a community, by and large, have not yet said "we want our daughters (and our sons) to have better ways of preventing the BRCA cancers that they face."

I don't want to sit with my niece and tell her that the only real option for preventing breast and ovarian cancer is to remove her breasts and her ovaries. And yet I fear that day will come far too soon.

HeritX

This is why when my oncologist friend Thomas Bock asked me to join a new organization he was forming to focus exclusively on research to prevent BRCA cancers, including the prostate and pancreatic cancers that threaten my sons, I said yes. That was two years ago. I have learned a lot since then. I have met hundreds of researchers, attended scientific conferences, reviewed grant applications and many other things I never thought I would do.

In early 2015 I sat in the office of one of the scientists who discovered my BRCA2 mutation. He is still one of the most prolific researchers in BRCA. When Dr. Bock asked him what research he was doing on prevention he responded that he was not doing any. In fact, he said that because women seem pretty happy with surgery and it is effective, he didn't really see the need for BRCA prevention research. I am happy to say that due to the work that Thomas and HeritX are doing he has changed his mind and his lab is now actively involved in designing BRCA prevention projects. This is only one example. There are many others. The bottom line is that 2 years ago there was essentially no research focused on preventing BRCA cancers and now HeritX has not only launched a number of projects but has also brought together an international collaborative working group of scientists who believe in this goal and who are working on it with us.

I believe that we can influence the future.

In early 2017 HeritX will be launching a vaccine prevention research project. Can you imagine if a vaccine could be available that would prevent our BRCA mutations from causing cancer to develop? Wow. That would be a gift for my niece, my sons and all of the next generation. Will it happen soon? No, likely not. But there are scientists who not only believe this is possible but are ready to undertake this work. I can think of nothing better to support with my efforts and my donations than this research. It is important not only to my family but to many others. You can find out more about HeritX at www.HeritX.org.

As you consider your year-end donation priorities, please think about making a donation to support this work. As Hilary Clinton famously said in another context, "It takes a village."

Wishing you and your family a happy and peaceful holiday season and a very healthy 2017!

Joi

PS - My mom is fortunate to be a long-term breast cancer survivor. We are raising money together for HeritX. You can visit our fundraising page here.