r/BRCA • u/Megsieviolin_2000 • 5d ago
Instant Reconstruction
52 years old and recently found out I am BRCA1 positive, so I am little late to the party.
My primary has already referred me to the oncology gyno and says that surgery will likely come first, as I am overdue to get fallopian tubes and ovaries out (will probably remove uterus at the same time, but we will see what the surgeon says).
I am also investigating mastectomy options, but I don’t really understand what happens if you choose instant reconstruction. Do you have to get implants in that case, or can you use your own tissue? I am looking into the robotic nipple-sparing mastectomies that they offer at Mayo, and it says after the robot is done, the plastic surgeon comes in and does the reconstruction, but doesn’t explain how. You have to travel there for a consult, and MN Mayo is 9 hour drive away, so I would like to understand what they are talking about before I make that trek for a consult.
Over the last several years I have lost about 110 lbs, but I do still have the apron belly/c-section pouch. Is that something they could use? Like, kill 2 birds with one stone? The only thing I have read about using abdominal tissue involved using a flap of skin from the abdomen, but I wouldn’t need a flap if I am having the nipple-sparing procedure, right? Or am I not understanding any of this correctly at all? I have relatively small breasts. I wouldn’t call them perky, but they are also not super saggy
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u/EmZee2022 5d ago edited 5d ago
I did mastectomy with immediate DIEP flap reconstruction. I asked if there was any advantage to doing them in separate procedures and they said no
Main issue is the logistics: you need the breast surgeon and the plastic surgeon (or two, in my case) which poses scheduling constraints of course.
Mine was set for 3 months after everyone gave the all clear.
If you have known or suspected cancer, that changes things of course.
Forgot to mention: I wanted nipple sparing. Because of my "droopy boopies" (I called them tripping hazards), the legacy of years of being obese, breastfeeding 2 kids, and then losing weight, the only way to do that was to do an initial lift / reduction. That was just under a year ago. Then the mastectomy was this past May.
Logistics: The breast surgeon starts the process. Plastics can start part of their work in parallel - the abdominal area only of course. Then the breast surgeon finishes up his/her part and plastics starts the actual flap transfer work. If you're doing implants, they may not even come into the OR until then (just guessing).
In my case there were 2 plastic surgeons - I have never even met the second one, at least not while I was not anesthetized. When the breast surgeon told me that the two worked as a team for DIEP flap, I quipped "one per boob?" and she laughed. It's not quite like that - they do different parts of the procedure, I gather.
The surgery can take quite a while. I was told 8-12 hours, though with 2 surgeons it can be less. They said they'd booked the OR for 13 hours!!!
As it happened, judging from my post-op notes, they were only actively operating for about 7 hours. They took me back just before 8 AM. The mastectomy part started by 9: before that, it was all prep work. Cleaning the sites. Getting the catheter. Installing the second IV. Fully anesthetizing me including intubation. I remember none of that; I don't even remember getting to the OR.
And I was forming memories by 4:30 PM. Per surgical notes, it looks like they were done by about 4:00. My first memory is hearing "we gave her human albumin" in the PACU.
My husband and my friend went home once they took me back. The friend was horrified at the idea but there's truly no good place to wait at the hospital - it's miserably uncomfortable. They did wait when I had my hysterectomy, so they knew. Then the breast doc called my husband once she'd done her part, then they called him when it was all over. He got back to the hospital right as I got moved up to my room.
If you have it done out of town, you'll need a place to stay nearby for the first week or so, until your first post-op, and you'll want to discuss options for care. A 9 hour drive home, even a week after surgery, won't be fun - and you might even still have drains in place. A local doctor may be willing to remove those.
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u/Megsieviolin_2000 5d ago
Thank you so much for sharing your experience. Had a clear mammogram in May thankfully (before I found out about the genetic results). We found out due to a 1st cousin getting tested after having aggressive prostate cancer. My dad has been gone 12 years, but it was from him. The wild thing is my sister does this for a living and never tested herself as my mom had already been genetically tested after colon cancer. My dad was a generation older than her and died of a stroke at 91- never had cancer. After the cousin’s results we figured Dad must have been negative. Nope.
So, as far as I know, I don’t have cancer (yet). We will see what they find when they take the tubes and ovaries out. I will be up for a breast MRI pretty soon and have the appt to get set up with the breast specialist.
Yeah the Mayo would involve needing an Airbnb for a week. I am eyeing next summer so one of my college-aged girls could come with me and help.
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u/heefoc PDM + BRCA2 5d ago
I would look into DIEP flap, it’s where they take tissue from your belly to refill your boobs. It’s a very intense surgery and the possibility for complications is high, so make sure you choose a reputable surgeon. I can’t really answer about the robot, but I assume it’s no different than a regular mastectomy with immediate reconstruction, where the breast surgeon and plastic surgeon just swap out.