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It was Christmas 2012 when I found out that one of my cousins had the BRCA1 mutation. I remember wondering what ‘BRCA1’ was back then, as I had never heard of it previously. Interestingly enough, I did not bother to investigate what BRCA1 was at that time, as I assumed it did not pertain to me, whatever it was.
A few months later, my annual mammogram showed something suspicious. I’d been having annual mammograms since age 40, and this was the first time I had ever been called back for a second look. After further tests, it was determined to be dense breast tissue and not a concern. Although I felt relief, it was this mammogram callback that raised my curiosity as to what ‘BRCA1’ meant. After doing some web searches on ‘BRCA1’, talking with my cousin, and understanding more about our family tree and our BRCA1 mutation, I worked with my gynecologist to get tested for the same BRCA1 mutation that my cousins had, and found out in May 2013 (at age 50) that I also had the same BRCA1 mutation.
I made up my mind pretty quickly that I wanted to be a previvor, with no looking back. While I was waiting for my first appointment with a genetic counselor and a breast oncologist, my cousin told me about the local FORCE meetings in the city where she lived, and suggested that I check online to see if Houston had a FORCE Outreach group. Lucky for me, Houston did have a FORCE connection. After attending my first Houston FORCE meeting in June 2013, I found great comfort and support in the dialog, the learning opportunity, and the encouragement. I remember thinking that I wanted to someday help others in the same way.
At some point after my first FORCE meeting, and in between prophylactic surgeries, I joined the team of FORCE Helpline volunteers, taking a shift answering calls every 2 weeks. I have also completed the FRAT training (FORCE Research Advocacy Training) program, which prepared me well for hosting FORCE exhibit tables in Houston for both national and local conferences. During fall 2014, I became the Houston Peer Support Group Leader, which allows me even greater opportunities to reach out to the local Houston community and share information about FORCE and events related to HBOC (hereditary breast and ovarian cancer). Most recently, I have joined the ABOUT Promotion and Recruitment Work Group, helping to develop messaging that aids in awareness and recruitment of candidates for the ABOUT registry, which will be important for longer term tracking of those of us impacted by hereditary cancer.
I’m a firm believer in everything happens for a reason. Having never heard of BRCA1, HBOC, FORCE, ABOUT, and a host of other acronyms a few years ago, I have now found my spot in this community, and want to help others find their spot as well. I am humbled by so many men/women who I’ve come in contact with over the last few years (including my relatives) whose journeys in the HBOC space were so much more difficult than mine. Although I don’t know where my HBOC journey will take me, I know that helping others via FORCE is definitely part of my destiny.