As a tribute to my mom, who never knew she carried a BRCA mutation, my journey has been marked by efforts to raise awareness about hereditary cancer.
I'm more than my risk… some fun facts about myself:
Favorite book / authors:
Too many to list...I'm an avid reader!
Favorite TV / Movies:
Don't watch a lot of tv, but love, love LOVE The Sound of Music!
I'm a writer and editor who loves social media, Words w/Friends, mah jongg and all things Jewish. I'm also a daughter, sister, niece, aunt, and friend with a rich, full and balanced life.
Follow me on twitter @janethewriter
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My BRCA journey began quite suddenly in 2010, when after losing our mother to exceedingly virulent triple negative breast cancer in seven weeks' time, my sister and I pursued genetic couseling and testing. Although my sister tested negative, I carry the same mutation that we surmised my mother carried, and which we now know her sister also carries.
Forty-seven at the time, a full hysterectomy a few months later was a "no brainer," but I couldn't quite wrap my head around a mastectomy and so I opted for surveillance, despite the fact that I fell asleep each night thinking about breast cancer and woke up each morning with the topic still on my mind -- sure that undetected cancer cells were growing wild in my body.
In April 2011, I had a baseline MRI that, according to my oncologist, "wasn't perfect," because it showed a few things that needed further study. Within a week, I had another MRI, an ultrasound, and a needle guided biopsy. Thankfully, everything was fine from all those tests, but that much poking and prodding in one week convinced me that I couldn't live the rest of my life going through that sort of routine every six months. Within a few weeks, I had a breast surgeon, a plastic surgeon and a date for a PBM with DIEP reconstruction.
The 12-hour surgery took place on July 21, 2011, I returned home on July 26, and went back to work on September 12. In between, I had an infection and necrotic tissue that had to be debrided, leaving a wound that required dressing changes several times each day for two full months, and continues to heal to this day. In June 2012, I had nipple reconstruction with tattooing in September 2012. Although they are without sensation, my new breasts are a size that's much more suited to the rest of my body (a definite silver lining!), and the wound scar--like the emotional scars--continues to Lighten a little bit each day.
Unfortunately, I currently am dealing with a hernia in my DIEP abdominal incisioin, so my journey is not yet over, but I have to believe that--like so much that came before--this challenge, too, will be met.
The hardest part of
The hardest part of my journey has been the emotional piece. Because we only learned of my mother's BRCA+ status after her death, I cannot help but wonder what she (and her doctors) might have done differently had her status been known to them at the time she was diagnosed -- or even at some point along the way. Could those actions and/or treatments have extended her life? Had she known of her status, would she have done the same things I did to protect myself from breast and ovarian cancer? Would she have been supportive of my surgery decisions?
Of course, we'll never know the answers to those questions, but they continue to haunt me from time to time.
Along the same lines, when I initially opted for surveillance, my sister and my father were not supportive of this decision, which, needless to say, created stress in our relationship at a time when we were still mourning (and reeling, in fact) from the death of my mother. Although that rift has healed, it was an exceedingly stressful and difficult period in the life of our family.
If I could do it over again
No. I believe that I made all the right decisions for me...and I allowed myself to come to those decisions based on my own timeframe and experiences. I was not pressured into doing anything that I was not prepared to do. Furthermore, despite continuing challenges, I am exceedingly pleased with my reconstruction and know that DIEP reconstruction, despite its more complex surgery and longer recovery period was absolutely the right choice for me.
My participation with FORCE
As the only known BRCA+ person in my family at the time, it was exceedingly helpful (and emotional) for me to meet other BRCA+ women when I attended my first FORCE meeting in December 2010, just prior to my hysterectomy. I remember being especially awed by one of the coordinators who told me she'd had a PBM a few years earlier and to see her there -- completely healed, normal in every way, and confident enough to talk openly and honestly about her experience. I'm pleased to say that she and I now work together as FORCE Outreach Coordinators in our city.
About a month before my mastectomy, I attended the annual FORCE conference, where, once again, I found myself surrounded by generous and unyielding support from women who had been empowered to face their own BRCA challenges head-on and, despite lingering physical and emotional scars, were moving forward in their lives, even as they were passing along to me what others previously had given to them.
Now it's my turn. As a relatively new FORCE coordinator, I am hopeful that with my own experiences and learning as a foundation, I, too, can step up to help other BRCA+ women behind me as they come to terms with their genetic mutations and decide upon which positive, life-affirming steps are right for them.