On being a “previvor.”
“You have the same mutation your father has,” the genetic counselor reported stoically into the phone. I was 35 years old, and 3,000 miles from home at an offsite. I think I may have said “thank you for telling me;” I don’t really remember. I didn’t cry. I was expecting this result— once I knew my dad had it I had a 50/50 chance of having it myself. A mere flip of a coin. In two minutes, I was expected to be back in my seat. So I compartmentalized the news to deal with later.
When I came to grips with what I heard, I knew that single sentence would eventually lead me to where I sit today: at the precipice of systematically removing some of the parts of my body that both make me a woman, and are very likely to kill me in the next few decades if I don’t take action. When I wake up tomorrow morning, I will have completed the first of what is likely two or more surgeries to reclaim my life from my own genes. I will also not yet be 40, and be in menopause. October is also breast cancer awareness month so I thought now is as good a time as ever to tell my story.
So, why am I removing two perfectly healthy ovaries from my body? Let’s take a step back for a bit of context. Genetic researchers had long suspected that reproductive cancers, in particular those in the breasts and ovaries, had a genetic component, since these types of cancers tended to run in families. In 1994, the first of two BRCA gene mutations, or “breast cancer genes” as they are more colloquially known, were discovered. The occurrence of these mutations is higher in certain communities (such as Ashkenazi Jews, like yours truly) than in the population as a whole. My paternal grandmother developed breast cancer in her 50s, and there is a history of cancers of all sorts in my dad’s family, so my dad proactively decided to get himself tested for a battery of genetic predictors for cancer. This is when they discovered that our family had the BRCA2 mutation.
Sidebar: There’s a whole bunch of things that nobody tells you when you sign up for genetic testing for something like this. If there is evidence you may have one of these mutations (I believe it has to be either breast or ovarian cancer in a first-degree relative, or a known mutation in a first-degree relative) and you want to be tested, keep in mind that just carrying the mutation, even if you don’t have cancer, is a “pre-existing condition” and can make you uninsurable, in particular for life insurance. So it is helpful to make sure you have life insurance and health insurance (mostly to cover the significant costs of managing your mutation) before you go for this test. But the politics of it all is a topic for another day (however, please go vote TODAY if you are reading this and haven’t yet voted! In particular, if you are moved by the completely ludicrous notion that your own genes should prevent you from getting life insurance coverage.)
So anyway, what happens when you find out you have a BRCA mutation? Essentially, knowing that you have this mutation is all about risk tolerance. You become very good friends with a lot of doctors who give you a lot of information about how to manage your risks. I have a genetic cancer specialist at Stanford overseeing my care, a clinical nurse practitioner I see every six months (every 3 when I was pregnant), specialists for the *other* types of potential cancer I could get that are linked to this mutation (in particular melanoma of both the skin and eye), and a team of surgical specialists that I’ve been consulting to make decisions about prophylactic surgeries. If you’re OK with a bit of risk, you may decide to only go for screenings. Some women never decide on surgery. Since I found out that I had the mutation, but before I was ready for surgery, I had screening MRIs and mammograms and ovarian ultrasounds every 6 months, and I started taking the cancer drug Tamoxifen to reduce my risk further.
But my doctor strongly recommended that I get my ovaries out because there is no reliable early detection for ovarian cancer and it often doesn’t produce symptoms until it is relatively advanced. Having a mastectomy is a more controversial decision because screenings for breast cancer are very effective and if done regularly, it is likely that cancer will be caught early. But that’s about detection, not prevention. If, like me, you’re risk averse, the best way to reduce your risk is by removing the offending organs altogether. So I’m beginning that process.
To psych myself up to take this leap, I’ve leaned on friends and other power women I met through Facebook support groups. I started making and selling beaded bracelets during the pandemic in Breast and Ovarian cancer awareness colors — and donated some of the profits back to FORCE, an advocacy group for people with hereditary cancers or mutations. I even made bracelets for a dear friend who herself was undergoing a preventative mastectomy and for her whole family for solidarity, which made me feel fantastic.
There is a lot of emotion associated with deciding to have these surgeries, even when I’m sure it’s the right way forward. For one thing there is the relationship between having these parts of my body and my femininity. Will I be “less of a woman” without ovaries? What about without breasts? It is a strange feeling knowing that I am walking into the surgery with the ovaries that gave me my beautiful children, and walking out without them, as well as the ability to have any more children of my own. But there is also the absolute empowerment that comes with being given the chance to take control of my own health. In some ways, I actually feel lucky. I’m lucky I discovered this before I developed one of these cancers. I’m lucky I have an amazing care team who is used to managing these mutations. And I’m lucky that I have options and access to state of the art technology that can give me piece of mind.
And also, it gives me something in common with Angelina Jolie, arguably the most famous BRCA carrier of all time. So there’s that.