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Men in BRCA: Looking Back, Facing Forward, part 2

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When I refer to those who are diagnosed with the BRCA gene mutation, I try to be cognizant to say “people”, because there are men with this diagnosis too. Yeah, I know–I didn’t believe that men could have breast cancer either, until my mom’s cousin Karl was diagnosed with breast cancer over a decade ago. Initially, we thought that he might be confused. Nope. He was very accurate and so were his doctors, which added another check in our BRCA box: male breast cancer in the family.

While attending the Boston BRCA conference, it was interesting that I felt most curious about the men present. As I came upon each male, I immediately put him into one of three categories: doctor/presenter, spouse supporter, or BRCA positive. Beyond the two empty seats off to my right, sat Stan. He looked like a hipster in his 50s, reminding me of one of my favorite artists, Keith Haring with his round glasses and all. Our conversation started as I commended him on representing the males, empathizing how hard it must be with a diagnosis that is focused on breasts. How can men get breast cancer, when men don’t actually have what we think of as breasts? Isn’t that puzzling? Even more challenging is trying to explain it to others once you are diagnosed.

Men DO have breast cells and have a 1 in a 1000 chance of developing breast cancer, or much higher if they have the BRCA2 gene mutation, like I have; moreover, male breast cancer can be more deadly, because it is so unexpected and, therefore, undetected. Like a woman, if a man feels a lump, he too should have it checked out. On the contrary, male breast cancer is easier to detect without all of the fatty breast tissue. A man has greater chances of developing breast cancer in his 60s, when estrogen increases, as was the case for my cousin Karl. Sadly, if a man is worried and wants an MRI to check his breast tissue, insurance won’t cover those images for men–only women.

I discussed those inequities with Stan, and the woman he was with, Cassie, who happened to be one of his sisters. All 5 of their siblings have a positive BRCA mutation, along with Cassie’s 3 grown kids. We all agreed how important the male voices are, in order to raise awareness about close monitoring, especially with the prostate, a known cancer connected to male BRCA gene mutation carriers. A panelist highlighted his journey of answers, along with isolation. If it felt near impossible for me to tell people about my BRCA diagnosis for fear of judgement, I wonder how incredibly painful it can be for many men. Honestly, I started to feel a bit guilty about my super fun Bloom with BRCA blog logo, realizing that it wasn’t inclusive for Stan or people of color. Sigh.

To my surprise, he loved my logo in all its sassy essence (see above!). He reported that it wouldn’t scare him away and that I’d better not change it. Phew. I was especially relieved, for I had come to respect Stan and how he takes care of himself with regular screenings, vocally sharing his story, all while questioning the inequities. Hats off to, Stan, and all of the men in BRCA!

art credit: Keith Haring