The basic info is that BRCA1/2 are not the only breast and ovarian cancer genes and the your personal risk varies depending on the exact mutation and your family history. There are currently a number of options if you find out that you do carry the genetic mutation, and while I opted for a double mastectomy WITH reconstruction, other previvors might choose surveillance or no reconstruction.
Here are a few links to information that I found helpful. And, of course – see the right sidebar for some more resources.
I am a queer Jewish woman from New Jersey, who has been living in Oakland for 15 years. My mom died of breast cancer at age 43, when I was 10. Breast cancer has always been on my radar and something I would bring up to my doctors (at Kaiser). It took me many years to even consider doing the genetic test because I thought the only option would be a double mastectomy and that was not something that I thought I would ever do.
I found out that I carried the BRCA1 genetic mutation in October of 2014 when I was 34. Devastated, angry, wishing I could yell and cry to my parents about it (I lost my dad when I was fairly young too), in my heart I knew I was only interested in a heavy monitoring routine through Kaiser’s high risk clinic. Mammograms and Breast MRIs every 6 months for my breast cancer risk and CA-125 bloodwork and transvaginal ultrasounds every 6 months for my ovarian cancer risk.
That January (2015), I went to speak with doctors at the high risk clinic about my options. Although I went in staunchly opposed to what I call western medicine’s ‘cut it off and out,’ I knew that one question would immediately change my mind.
The answer was yes, and I also learned that if I did get breast cancer, I would have to go through chemo and radiation IN ADDITION to the surgery. So, with an 87% risk of highly aggressive breast cancer, I opted to plan for a double mastectomy with immediate reconstruction.
I chose to do this proactively because I want to do what I can to minimize my risk and frankly…stay alive. I am chose this surgery because I don’t want to go through the trauma of chemo and radiation that my mom did, and don’t want to have any child of mine continue a pattern of mother-loss too young, and because I want to continue to experience this world with the people that I love most dearly. I’m privileged that I live in a time when I have the option of getting tested, and can afford the health insurance that I needed to make this doable.
I found a wonderful, warm, caring doctor that I trusted down at Kaiser Santa Clara, and opted to use my own tissue for reconstruction. That is, I don’t have implants, but instead, they harvested my tissue (aka fat) from my abdominal area and used that to create breasts.
I planned for to have the surgery in the Fall, when my softball seasons were wrapping up, and when I knew that I prefer to nest at home, instead of having FOMO during the summer. That year I went through the range of emotions and did my best to get my body and mind in tip-top shape for my November surgery. And I did, sealing the deal with going to Hawaii with my best friend the week before — so I wasn’t sitting at home and anxious.
The surgery happened in November of 2015. I was in the hospital for a week, and it was a brutal recovery, I’m not going to lie. But, within about two months, I was starting to go to the gym again, and play ball again. I had two additional surgeries (all much less intense) to make things look ok and feel good in my new body and despite the intensity and pain, I was amazed at how resilient my body has been.
Being a previvor (that’s what we are called) is a privilege, and it is also something that makes me feel like I can be a point of contact to others in my community who might need a connection to resources or who have questions. And that is how I came to be topless in front of you.
This is an NPR story that includes links to some private testing. Just as a comparison, I got tested through Kaiser and it didn’t cost me anything.
I really the simple design of this resource and I find the info to be pretty helpful.
Check out page 17.
I haven’t read this thoroughly, but was happy to find it out there. Thought it might be good for a lot of us queer folks.
Here are some Facebook Groups to check out.
DIEP refers to the specific surgery that I had, so not all people on this board are BRCA1/2 mutants and many have had breast cancer. I’ve gotten many helpful answers and resources from members of this group (even if I’ve had to educate them on ‘queer’ not being a bad word).
I don’t participate very much in this group, but it definitely can be a good resource.
If you have questions, feel free to email me at queerandbrca(at)gmail(dot)com