Best Of

@grammie2 there were a bunch of factors that went into my decision to do the double mastectomy and go flat. Through the diagnostic process, we found that I had cancer in both breasts as well as a gene mutuation called BARD1 that increases chances of cancer. BARD1 doesn't increase your chances of cancer as much as BRCA, but I still managed to get a double whammy! Ultimately I wanted as few surgeries as possible, to limit the risk of complications from reconstruction, and to get the chance of recurrence or new cancer as low as possible. I also preferred the idea of being symetrical on both sides. I am very glad I took the approach I did and miss my hair a lot more than I miss my breasts!

While my surgeon said she could do lumpectomies on both sides, my interpretation was that she agreed that mastectomy was the best approach when I said that was what I wanted.

For me, my oncologist explained that a lumpectomy might not clear the margins due to the location of abnormalities in my breast. She detailed her plan, but feeling overwhelmed, I told her my preference is a double mastectomy. She totally agreed, emphasizing its efficacy. Then my MRI results showed a huge area of abnormalities— her words were “completely peppered”— and lumpectomy is off the table. When I left that first day, I sat in the car and thought, did I really just say that? Do I really want to go through a double mastectomy!? And I kept asking myself. But that never changed to a “no,” so I’m good with it. 

The last appt she went into the same spiel to save the nipples, explaining she could do it, and the long list of possible issues and what she’d do to try to counteract them, but I told her I’d already made peace with the idea of nipple tattoos. She agreed that would probably be best. (For some reason, I really love the shapes, as in heart or flower nipples, instead of boring circles. But I’m still thinking on that.)

@bailey.boo I'm having radiation on one side as well and will follow you to any useful threads! I've only met with the radiation oncologist once, and it was before we knew that I would be doing chemo too so you have more info than I do right now. Mine is expected to be three weeks and doing left side only since the tumor on that side invaded the skin. I've already had my surgery - double mastectomy to flat.

I spoke with my physical therapist today about what to expect with radiation. She said it's important to drink a huge amount of water and keep stretching/moving during the course of treatment. Expect tightening will come and go over time (and by time, she said it can come and go over years!) but ongoing stretching should take care of it and if it ever slows you down too much, a few sessions of physical therapy can help manage.

So I met with my radiologist for the first time and learned more details of my plan. Unless my pathology from surgery comes back as positive, I will start radiation 3 or 4 wks after surgery. It’ll be Mondays thru Fridays, for 6 weeks straight, so 30 times total. My sensitive skin is going to be a hot scabby mess. It can and Likely will (according to the radiologist) affect the size you can end up with. I’ve always been DD in one, and DDD in the affected right one. When I asked about the possibility of getting both DD (I’m getting a double mastectomy, but radiation will be right side only), she looked doubtful and said I should talk to my surgeon and be ready to adjust expectations. (My husband was hoping I’d go larger, so he’ll be crushed. Better take him to my first surgeon appt so he can hear it himself.) And I’m likely allergic to most of the things they usually use to combat the burns and scarring. 😬 On the day of chemo round 3, they want me to swing by for a couple of samples I can test, including silvadene.

Has anyone met with their radiologist and heard similar? I guess I need to start seeking out threads on the next parts of the plan, so I can go in with the right questions.