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Volunteer Spotlight - Amy Byer Shainman

March 01, 2013

Volunteer Spotlight - Amy Byer Shainman

The 2010 FORCE conference provided my sister and me invaluable information that helped us make important life-saving decisions. My grandmother died in 1934 at the young age of 33 from breast cancer. Her mother also died of breast cancer, and several of my father's female first cousins have had breast cancer. However, even with all of this cancer, we never looked at our family tree until my sister, Jan, was diagnosed and treated for both ovarian and uterine cancer in 2008. It was at that time that we learned she carried a BRCA1 genetic mutation. My sister and I had heard of BRCA testing, but simply were not aware of what the testing actually meant. FORCE provided us the support, tools, resources, and knowledge we needed to confront our hereditary cancer.

My sister underwent chemotherapy for ovarian cancer at the same exact same time my dear friend, Kristin, was battling triple negative breast cancer. Two BRCA cancer battles were happening right in front of me, altering my perspective on everything. I credit Jan, Kristin, and FORCE for saving my life. I saw only two choices in front of me--do nothing or do something. I could sit around with my high risk percentages and dense breasts and wait to see if I would get a hereditary female cancer like so many others in my family or I could have preventative surgeries and drastically reduce my risk before cancer would arise.

I watched what my sister Jan and my friend Kristin were going through, and I thought to myself, "Yes, I have inherited this dangerous genetic mutation but I have been given the gift of knowledge and I have options to drastically reduce my risk. Knowing that I could actually do something to prevent what they are going through, reduce my own risk for getting cancer, and even avoid death -- I couldn't just sit on this knowledge and do nothing."

In March 2010, I opted to have a complete hysterectomy and in September of 2010, I had a nipple sparing, skin-sparing mastectomy with reconstruction. And, now I am invigorated with passion and purpose. I feel a deep responsibility to share what I have learned about hereditary breast and ovarian cancer and BRCA gene mutations; compelled to pay it forward and share my story with others, just like the information was given to me. My decision to have preventative surgeries is what was right for me: however, it may not be what is right for everyone. My hope is that all women realize that knowing their family medical history and learning how they can stay healthy is ultimately the most loving thing that they can do for themselves and their family.

My decision to become a FORCE Outreach Coordinator was a natural progression for me. I can now take my story and passion, combine it with all of the wonderful resources FORCE provides - the brochures, website, awareness, advocacy, research, newsletter, education, support, conference - and I can make a difference for others. My friends now call me AWARENESS GIRL: I seem to fly all over town raising hereditary cancer awareness. I have talked to high school girls, Jewish groups, cancer groups, and go pretty much where anyone will have me. It has been very therapeutic for me to share my story with others. I need to say a big thank you to FORCE for empowering me to empower others.

Posted in: Volunteer Spotlight
Tags: FORCE , Volunteer

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