A Positive Spin on BRCA
Eight years ago, I adopted a terrified, matted rescue dog dropped off as a stray at a high-kill shelter down south. He was on the euthanasia list and even bit me at our meet & greet. When asked if I still wanted to take him home, I apprehensively said, “Uh… sure…….” I drove home possibly more afraid of him than he was of me! Let’s just say I’m not always known for making the best decisions.
In 2021, my doctor asked if I’ve ever been tested for the BRCA mutation and whether this would be something I’d be interested in pursuing. I can’t recall the circumstances around this conversation – perhaps they were using a new EMR and my family history was reviewed again. I didn’t think very long before I somewhat reluctantly said, “Uh… suuuure…..”
To give some context, I had been heavily involved with caretaking for my parents at the time. Like many things in life, much of what they, and therefore I, was dealing with could have been very different “if only we’d known this sooner…” or “if only we’d done that earlier…” So I figured, as the old adage goes, “an ounce of prevention is worth a pound of cure.”
Shortly after getting my BRCA test results, taking care of my parents ended up becoming my full time job. At each physical, my PCP reminded me of options and often gave me referrals to reputable specialists. But at the time, all I had the capacity for were semiannual sonograms and/or mammograms and annual MRIs. Even those appointments were hard to juggle with the constant surprises and emergencies that arose due to my parents’ deteriorating health. At the very least, though, I treated myself to the luxury of those visits.
After two years of full time caregiving, my parents both sadly passed, just 6 months apart. A few months later, at my next imaging appointment, I was asked “Well, if you’re done having children, have you considered getting your ovaries removed?”
Done?! I haven’t even started! I thought in shock.
While I tried not to dwell on it, I at least made an appointment with a large hospital’s high risk clinic. None of my knock-knock jokes went over very well, as the oncologist very seriously reviewed my lifetime risk based on various factors. She asked me what reason I had to not go the route of prophylactic surgeries, knowing what we know today. I explained that I’d just spent 14 years taking care of my parents, the final two being round-the-clock and while I mourned their loss, I tried to consider the “bright side” that everyone tried to console me with – that I could now focus on myself and really start my life. A salpingo-oophorectomy and double mastectomy just weren’t on my 2024 bingo card!
She got my attention when she validated that while such things may not be in our plans, “we also don’t plan to get cancer. That kinda derails life too…” She had a point. I felt like a ticking time bomb.
Over the next few weeks, I consulted with Dr. Google for many hours each night. I spoke with various doctors and a few friends and family members. The numbers and the research and the experts all said this is a no-brainer. But still being what I like to think of as “young,” single, and childless, it was a much harder decision to make. Any surgery always has its risks and potential complications even under the best of circumstances. Having been traumatized by what I went through for so many years with my parents, this fear rang true even more. I realized that if I had to choose between undergoing these surgeries alone or potentially undergoing cancer treatments along with these surgeries alone, the choice was obvious.
My decision was already 99% made by the time I reached out to Sharsheret. But speaking with Sharsheret’s genetic counselor was reassuring nonetheless. I could tell that regardless of what my decision would have been, she and the organization would be ready to support me in every way they could. When I told my Sharsheret social worker what my surgical plans were at the
time, including the doctors I chose, she immediately got to work finding several peer supporters I could speak to. And as my various surgery dates approached, the only silver lining was the anticipation of the beautiful gifts she began sending my way. When I’d wear the plush white robe, I know I was supposed to feel like a princess getting the royal treatment. Yet when I look at it to this day, I can’t help but smile as I picture myself as a champion boxer who just emerged victorious after 9 rounds.
People tell me I’m brave and courageous for having chosen this path, but I admittedly feel a bout of imposter syndrome. While this has by no means been easy physically or emotionally, it certainly can’t compare to fighting cancer, which could have any number of outcomes. I was fortunate to have had a relatively uneventful experience and am exceptionally grateful to my medical team for that. I am also grateful to my friends, family, and of course, Sharsheret.
I often feel “guilty” being a previvor versus a survivor. But for those on the fence about testing, while it’s very true that ignorance is bliss, it is also true that knowledge is power.
I am happy to report that I am now on the other side of this finish line. I vividly remember my earlier conversations with peer supporters who told me that before I know it, I’ll be the one looking back on this experience, reassuring the next woman in my same position. And while I
don’t always make the best decisions, I like to think that genetic testing and being proactive were amongst my better ones.
I now write this as I lay in bed soaking up the last days of my time off work recovering from my three surgeries this year, my ever-loyal and now loving dog still by my side. Turns out he, too, was a pretty good decision after all.