My Sister and I Share a BRCA2 Mutation. We Didn’t Make the Same Choices

From as early as I can remember, I have shared everything with my older sister. What started as clothes and shoes turned into cups of coffee in college, then shared apartments in our early adult years. We are good at sharing, and we prefer it this way. I had never come up against anything that refused to split in two.

Just over three years ago, we found out that we share a mutation of the BRCA2 gene, identified by a string of letters and numbers.

I remember being in the kitchen, already sitting, when my sister called and told me to sit down for some news. She explained to me what the BRCA2 mutation was and read through her results packet, outlining percentages of generalized risk line by line. It was because of her call that I knew to step into a private conference room at work to brace myself when the doctors called with my own results three weeks later. In true older-sister fashion, she had prepared me for an experience she had to face alone. Genetic testing should come with a disclaimer: bad news may be delivered more than once.

Learning What a BRCA2 Mutation Meant for Us

The time that followed our results was standard practice in our muscle memory of sharing. “Understanding BRCA” was the first title added to both of our carts, and the same research papers dominated our search histories. Our initial inquiries were done with the same doctors, and as a result, our initial list of options was shared. Preventative double mastectomy or screening? Now, at 35 years old, or at 40? Family planning or egg freezing?

It was around this time I began sharing the news with loved ones, and the most common response of “well, at least you know” would emerge. To that I would respond that I agree. Knowing my risk before there is anything to treat affords me more than any cancer survivor was ever given, and I never take that for granted. I recommend you get tested too.

When Two Sisters Make Different Choices

And then the tune changes.

It's a unique grief watching your sister deliberate between nipple- and nerve-sparing surgery options in preparation for a date night with “what-if?” knowing damn well sensation preservation is a crapshoot anyway. It's a unique grief for her to watch me forgo surgery for fear of complications and instead push forward in anticipation of a date night with “luck.” We were making opposite choices, and both of us were right.

So many are quick to issue advice from a place of “well, if this was me,” without first considering what those shoes would feel like. My results put my lifetime risk of breast cancer at 84%, while the average woman’s is about 13%. These shoes are daunting. From the outside, it seems like there’s an easy choice, a quick fix to a cancer-less life, but less so when you’re being handed the deliberation packet in succession.

It was also around this time we were able to cocoon together in this new pace of life. I was able to hand my MRI scans to her Arizona radiologists for a second opinion without having to explain my family history. She was able to learn about clinical trial surgeries my New York hospital was exploring that hers locally was not.

Finding Community as BRCA2 Previvors

Every day, the club of BRCA2 previvors grows with widened access to genetic testing. Two years after our results, at a gala in Miami, I met Nancy Brinker, who founded Susan G. Komen in 1982 after her older sister Susan died of breast cancer at 36. There was no test to offer Suzy. In those days, words like nipple or breast were used sparingly even in the privacy of medical rooms.

She was telling me about her sister. I got to introduce her to mine.

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