Susan Feinberg, FORCE Social Media Volunteer
I consider myself to be an incredibly lucky person – lucky to be alive, lucky to be in the first generation of women with HBOC who have a chance to live a normal lifespan, lucky to live in a city with some of best hospitals in the world, lucky to have found FORCE, and lucky to have the opportunity to help FORCE members make informed decisions.
Very few people who know my story would consider me lucky. After all, I not only inherited a BRCA1 mutation from my father, but I was diagnosed with two different types of cancer over a 13 month period But here I am, going on five years as a survivor and I’m healthier than I have been in my entire adult life.
Like many FORCE members, there have been many cases of breast cancer in my family. It was almost expected that women on my father’s side of the family would eventually be affected and I lost my mother’s only sister to breast cancer as well. My first cousin’s daughter was diagnosed on her 30th birthday, and my cousin (the mother) was diagnosed several years later. At some point, my cousin’s daughter underwent genetic testing and was found to be BRCA1 positive. Later, her mother and brother also tested positive for BRCA1 187delAG. I knew this and I figured I would eventually be tested but I never made it a priority.
In January 2009, I congratulated myself for making it to age 50 without having breast cancer. But… I did have breast cancer. In May of that year, I found a lump that had not been detected in my annual mammogram and immediately got it checked out. While I was waiting for my biopsy results, I first heard about FORCE at, of all places, a family wedding. And what a wedding it was! The bride and her father were BRCA2+; the groom (my cousin’s son) was BRCA1+ as were his mother and his sister. Both families had lost many, many beloved family members to cancer. As you can imagine, the last thing that anyone in the wedding party wanted to hear was that I was waiting for biopsy results. So, I kept the biopsy a secret, smiled as best I could, danced with my cousins, kept my anxiety to myself and read with great interest the FORCE brochure that the newly married couple left on the tables for every guest instead of wedding favors.
A week later, I had my diagnosis and an appointment with a genetic counselor. In the meantime, I spent many hours scouring the FORCE website for information because I assumed that I was BRCA1+. I went ahead with surgery (lumpectomy) before receiving my genetic test results and a few weeks after surgery, my BRCA1 status was confirmed. The following 12 months were a blur of more surgery, chemo, serious complications, and radiation. During this time, although I wasn’t interacting with anyone from FORCE, I continued to rely on two primary sources for information as I planned my future: my wonderful medical team at Beth Israel Deaconess Medical Center in Boston and FORCE.
13 months after being diagnosed with breast cancer, I was diagnosed with fallopian cancer after my preventative BSO turned out to be not preventative at all. I know that the BSO was too late to prevent my 2nd cancer but I also know that it saved my life. Once I recovered from the follow up surgery (hysterectomy), I was ready to get involved with FORCE.
In 2011, I attended my first FORCE event, the Joining FORCEs Conference. The conference was overwhelming in so many different ways – to meet so many people with similar experiences and fears, to learn so much from the world’s foremost HBOC experts, to be inspired by some of the strongest and smartest people I’ve ever met. I knew my life would never be the same, but I wasn’t quite sure in what way it would change.
A few months after the conference, I decided to volunteer to help FORCE get the word out so that other people’s lives could be saved like mine was. I was incredibly lucky to connect with Karen Kramer, FORCE’s VP of Marketing, who needed help growing FORCE’s Twitter program. By working with Karen and the rest of the FORCE leadership team, we have been able to reach millions of Twitter users around the globe (we may not have millions of followers yet but we are getting there!). Later, when the Boston area outreach coordinators stepped down, I agreed to take on that role. Being an outreach coordinator was just as rewarding and much more personal. My favorite aspect of the outreach coordinator role was watching new friendships blossom at meetings and seeing those relationships become a lifeline for so many of our members. Being able to support women and their families as they made life-altering decisions has made me stronger and helped me deal with my own BRCA journey, which certainly isn’t over despite being a two-time survivor.
After attending a second Joining FORCEs conference in 2012 and meeting hundreds of FORCE members, I made a decision to have a bilateral mastectomy and reconstruction last May. Thanks to FORCE, I understood my options, the risks of each alternative, and literally hundreds of tips for preparation and recovery. Shortly afterwards, during my longer than planned recovery (because even the best prepared woman can have unforeseen complications), I stepped down from the Boston Outreach Coordinator role and returned to the social media program, taking on responsibility for both Twitter and Facebook.
FORCE has provided my family with information and support that cannot be found anywhere else. I cannot imagine not giving back to FORCE.
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