5 years!

I wasn’t going to write a post this year - it seems the farther removed I get from my surgery the less I connect to being “someone who had a double mastectomy” (this is a good thing, it speaks to how normal life is after this surgery). But then, someone commented on one of my blog posts yesterday. That was the first comment I had gotten on an actual blog post in a while, months, maybe over a year now? And to get it on my five year anniversary of my surgery, made me pause for a minute.

I still get a whole bunch of interaction and private messages through my instagram posts, but to know that people out there are still reading my blog today really hit me. It reminded me why I wrote this blog — not just for me, but for the girl who just got her BRCA test results, or the one who has known about her positive results for two years but can’t quite pull the trigger on a surgery decision, or maybe the one who is terrified to get the genetic testing done, or the best friend or sister of someone who is about to go through surgery… so, I’ll write…

When I got my BRCA 1 positive results on my 30th birthday I was beyond overwhelmed. Informed? Yes. Completely overwhelmed? Also yes. It is such powerful information to have - but like everything in life, with power comes struggle, pressure, and stress. I desperately wanted a crystal ball to show me what life would look like depending on which decision that I made. I wanted someone to tell me “you need to get a preventative double mastectomy by X age to prevent cancer, and once you do that your life will look like this”. I wanted someone to say to me “you need to get your ovaries removed by X age, and once you do that your life will look like this”. The crystal ball doesn’t exist, but lucky for you, I do :)

I had my preventative double mastectomy at 32 - two years following my test results. I was in a happy and healthy relationship with someone that I saw a future with. I felt confident in the research I had done, and I was tired of living in fear of a cancer diagnosis. Today - I am 37, married to that sweet guy, raising the squishiest most perfect (formula fed) 18 month old, and expecting baby number two. I have frozen eggs (this was unpleasant but manageable, and I hate needles), and pay a monthly storage fee of about $100 to keep those on ice. I have not had to have any revisions on my breast surgery, although there was a fairly recent recall on the implants that were used during my reconstruction, so I am considering replacing them. The ones that I have can cause lymphoma — how ironic. A recent diagnosis of ovarian cancer in my family has reignited my plans to have my ovaries removed. Originally it was only the increased numbers in my chances for breast cancer that really kept me up at night, but now I have the fear of ovarian cancer knocking, very loudly, on my door.

Is surgery for everyone? No. But it was for me. I have never regretted my decision to have preventative surgery, and reconstruction, and feel very grateful that I had the power to be able to make it. My next steps, after I have baby #2 this summer, will involve me removing my ovaries. Maybe I will do just my tubes first, and have another baby by using my frozen eggs and IVF. Maybe we’ll try for a third (or fourth or fifth, if my lunatic husband has his way) before I have anything removed. Maybe our second kid will be a lunatic and we’ll be content with what we’ve got, and I’ll schedule my ovary removal ASAP. We will see. These things are still being sorted out, and something I weigh the options of every day. I talk to my doctor regularly about the choices that I have, and I thank my lucky stars that I have them.

I’m not as magical as a crystal ball, but maybe I’m a few steps ahead of you on your journey, and could be someone to talk to… I’ve lived a bunch of it already, and I’m happy to give any insight or input that I can to help you navigate your way through the BRCA fog.

I’m always here to talk or listen or text or call or email or DM or share pictures or whatever it is that might help you or someone that you know! Just reach out …

xxo