This entire cancer experience has been a series of fortunately/unfortunatelys. And my BRCA-1 mutation is no different – it truly has been both a Blessing and a Curse. At my monthly cancer support group (more officially known as Young Survivor Coalition) one of the members was talking about how she was struggling with figuring out why she got breast cancer – and she commented how “lucky” I was to have BRCA, because at least I knew why I got cancer. Her comment at the time threw me – both because I thought “how the hell can you say I’m LUCKY to have fucked up cancer genes?” but also because the more I thought about it, the more I realized that I wasn’t struggling with the “why me?” that many cancer patients struggle with. And I guess it’s because I know why I got cancer (more or less), it’s because my cancer fighting abilities are jacked up at the DNA level. And I can’t help my genes. They just are what they are.
But, unlike many BRCA mutation carriers, I didn’t really have much time to make any health decisions “prophylactically” – I found out I was a carrier in the spring of 2018, less than 4 months later I had a cancer diagnosis. In some ways, this was a bit of a blessing as well. I honestly can’t say what I would have done if I had the benefit of time to make decisions about how I wanted to handle my BRCA status – choices range from prophylactic surgery to semi-annual scans to ignoring it all together.
And, because of my BRCA status, I’ve heard from a number of friends who are also carriers of a BRCA mutation. Friends who I had no idea were living with a BRCA mutation who are going through their own struggles of if/when to have a prophylactic mastectomy. Until this experience, the only person I knew to be a carrier of a BRCA mutation was a college acquaintance, Lindsay Avner, who had a VERY strong family history of breast cancer and decided in her early twenties to reduce her own cancer risk by having a double mastectomy (at the time, she was the youngest person in the US to have the procedure). Lindsay went on to found BrightPink, an organization focused on “saving lives from breast and ovarian cancer by empowering women to know their risk and manage their health proactively.”
In my head, BRCA carriers “looked” like Lindsay – with a mother, sisters, aunts and/or grandmothers who had dealt with breast cancer. But half of the population with a BRCA mutation have no known family history of BRCA related cancers. Which is totally mind boggling and terrifying. OneInForty is a non-profit that is working to bring awareness of the prevalence of BRCA mutations in those with Ashkenazi Jewish ethnicity, and encourages individuals with at least one Ashkenazi Jewish grandparent to pursue genetic counseling and testing. Current medical guidance is only to pursue genetic counseling if there is a family history of cancers, but I’m on OneInForty’s side on this, and suspect in the next 5-10 years this guidance will start to shift towards more testing based on ethnicity, regardless of family history.
In fact, earlier this year, Nike started to offer free genetic cancer screenings to its employees – which strikes me as a smart move for Nike to be at the forefront of employee health given their company’s purpose, and also as a financially responsible move on their part. If I had known earlier about my BRCA status, I would have likely saved Target a boatload of money in healthcare costs.
All this has lead me to talk a lot about my BRCA status, because I don’t want anyone else to be surprised by their genetics after its become too late to make a thoughtful decision about what to do about it. Last month I wrote an article for a local Jewish media company, TCJewFolk, about my BRCA status. Because I think that knowing about your genetic risks is better than not knowing, because at least then you get to make choices on what to do about it. So, here’s my ask – if you have at least one Ashkenazi Jewish grandparent, I STRONGLY encourage you to make an appointment with a genetic counselor (if you’re in Minnesota, the genetic counseling team at Abbott/Piper is pretty great). Because what’s the point in all this health care innovation if we’re not going to benefit from it?
Unfortunately, my genes will always predispose me to certain types of cancer, and yours might too.
Fortunately, with medical technology, you can find out if your genes put you at risk, so you can make your own choices on what to do about it.
Fortunately Unfortunately 