When I take a step back it’s hard for me to believe that I am sitting here, right now, stressing out about scheduling my mastectomy. I’m so deep into the BRCA world…reading about it, researching it, talking to other BRCA sisters….that it all seems so normal. But it’s not. It’s really really fucking weird. But weird or not, here I am. Boob deep in The Great Mastectomy Saga.
I haven’t written much about this still unfolding chapter of my BRCA story…whether that is out of frustration or anxiety I’m not sure…but it’s causing me a lot of stress so rather than buying more chocolate to eat at my desk I’m gonna vent it out here. Let’s start at the very beginning…
July 2017: About a month after learning my BRCA1+ status I met with my first breast surgeon, who came highly recommend by a family member and is a bit of a big name in the NYC boob-related medical community. She was incredibly kind and compassionate as she helped me navigate the frightening and murky waters of my first set of scans — MRI, mammo, and ultrasound — and she talked me through my first results including a suspicious spot that needed biopsy. She patiently discussed options and potential timelines with me, gave her thoughts about my trying to have another baby (talked about the calculated risk of it in a still very reassuring way), and really gave me a sense of ease. I feel a little guilty that I haven’t seen her again.
October 2017: Moving past the whole ectopic pregnancy shitshow and deciding not to try for another biological child meant my mastectomy timeline could be bumped up as much as I wanted it to be — no more “calculated risk” of forgoing screenings for a 1+ years during a pregnancy and breastfeeding. I had been casually researching breast reconstruction options since the week I found out I was BRCA1+, but it was time to take a deeper dive. From the beginning my gut had been tilting me in the direction of DIEP Flap reconstruction (where tissue from the belly is used to recreate the breasts after they are removed) and leaning away from implants. I might write a post another day on why I don’t think implants are right for me…but for now I’ll just say that DIEP Flap surgery feels like the best move for me and my body.
November 2017: Having pretty much settled that DIEP Flap was my reconstruction method of choice, I met with Dr. Joshua Levine. I’m truly lucky that one of the top DIEP Flap docs in the country is just across the river in NYC, as this a newer surgical technique that fewer surgeons have expertise in. Through this whole crappy BRCA process, I have never felt more confident or more comfortable than I did in Dr. Levine’s office. After that appointment I knew he was the doctor I wanted to do my reconstruction. The only problem? He only has a few breast surgeons he works with…and the wonderful doc I’d seen a few months earlier is not one of them.
December 2017: Committed to working with Dr. Levine, I took his recommendation and met with a doctor at Mount Sinai that he likes to work with. Dr. Levine had explained to me that she operates out of his hospital of choice and they have a good working relationship. Although disappointed that I could not have the surgery with the breast surgeon I initially saw, I went into this appointment with an open mind. And…I liked her! She seemed smart, confident, and capable…and as a bonus she knew my previous breast doctor and was inspired by her to become a breast surgeon! I felt good enough in that moment to pull out the calendar and talk surgery dates. I told her that late April or early May would be ideal for me (with my work schedule) and she told me she’d compare availability with Dr. Levine and get back to me. She also told me she’d take care of getting pre-approval for the 6 month follow up MRI I was due for (to check on the suspicious spot found last time that was thankfully benign on biopsy). A few hours later, her office called me and offered April 30th as a surgery date. Perfect. It felt like the puzzle pieces were lining up just right.
But that feeling didn’t last long. More on what happened next coming soon in Part 2 of this saga.