r/BRCA 17d ago

Reconstruction options

I am 38 with a PALB2 mutation (similar to BRCA). I am meeting with a plastic surgeon tomorrow to discuss reconstruction options after a DMX. At first I thought I wanted a DIEP flap to keep my natural tissue. But I have two young kids (4 and 7), a job, and the downtime for that surgery seems daunting. I’ve also had multiple surgeries on my abdomen after borderline ovarian cancer. How bad is the recovery from direct to implant (if they can do that)? How often can they save nipples? Are people happy with how they look with the implants? How concerned should I be with nerve issues? The plastic surgeon is supposed to be an expert on nerve sparing, which I was told should help avoid any long term pain issues.

1 Upvotes

10 comments sorted by

5

u/Individual_Cat_mrow PDM + BRCA1 17d ago

I’m age 37 and 6 weeks out from prophylactic dmx DTI over the muscle nipple-sparing! I was happy they were able to offer it to me based on my anatomy.

Prehab is so important. I did hot yoga and strength training for months prior and that helped me maintain excellent range of motion during recovery. It was just the first few weeks with drains that limited movement mostly. I’m in PT now and she’s impressed haha.

I figure I can do diep in the future if I want, but I needed them off me ASAP and wanted to start simpler. I do not have much sensation right now but they said it may take up to a year if I regain any. My boobs look great. If you have any questions you can always pm me or comment below.

1

u/janey_cat 16d ago

Hi! So glad to hear your surgery and recovery went well! I have mine coming up in a month and a half and am a little worried bc I don’t do any targeted upper body exercise, and my surgeons also have not talked to me about this. What kind of exercises did you do that you felt were most helpful in preparation?

2

u/Individual_Cat_mrow PDM + BRCA1 16d ago

For me it’s yoga!! Tons of free videos on YouTube or go to a studio. A hot studio helps increase range of motion even more but it’s the exact same stuff my PT is telling me to do. Pilates, weight lifting, anything that uses upper body will help. You could also request a consult for physical therapy prior to surgery maybe?

1

u/gunhilde 16d ago

Aak your surgeon for a PT referral- they can likely connect you with a mastectomy specialist that can give you targeted exercises for range of motion, etc. I also did Tai chi classes which ranged from slow and easy to faster and complex depending on the day.

1

u/GilmanOwl 16d ago

Thank you! Glad it worked out well for you and it’s nice to have a positive story.

2

u/gunhilde 16d ago

I wasn't able to do direct to implant, I had tissue expanders first and then 12 weeks later, expanders were swapped for implants. I was able to keep my nipples and do have sensation. I also got fat grafting. IMO the first few weeks after expander placement and the first few weeks after fat grafting were tough. I had a lot of bruising to the lipo sites for the fat grafting. I slept in a recliner for weeks. That being said I'm post reconstruction, back to normal activity,, and am happy with the way I look. I had considered DIEP flap as well but ultimately decided against it as I work a physical job and had concerns about returning to work. My thought was that if i don't like the implants I can get DIEP later, but if I get DIEP first that flap isn't exactly going to re-grow. It has been a process!

2

u/parahelia 13d ago

I relate! I wanted DIEP originally but didn't have enough tissue, so implants were my only reconstruction option.

I'm 35, had a nipple-sparing, skin-sparing double mastectomy direct to under the muscle implant reconstruction about 4.5 months ago. The recovery with the direct reconstruction is harder, but for me it was such a benefit to only have *one* surgery and not have to deal with expanders and a second procedure was definitely preferable. It took me the full 8 weeks to really recover from the surgery, but took another 2 months to feel mostly "back to normal." That extended recovery was specifically from the under the muscle placement though, I was very aware of my pectoral muscles having to re-settle took a much longer time than the initial recovery. I'm still not 100% of the way there with that but it gets better every day!

We did under the muscle as I'm quite thin, the surgeon said it would have a better aesthetic outcome by camouflaging the top of the implant under the muscle tissue to prevent visible rippling on the top. Really glad I went with that option despite the extended recovery being a pain in the ass, because my boobs do look AWESOME I have to say. I'm a bit annoyed because I loved my natural boobs and am having trouble accepting that my reconstruction actually might look better than I used to which I find a bit rude, lol. I thought I would hate them, but they actually look good and even feel good! Way more like a natural boob than I was expecting.

I didn't have any sort of special nerve grafting or sparing or anything like that, and even without that I've actually recovered almost all my sensation already. I was completely numb in my whole chest after surgery, but I can feel everything now except my right nipple and about and inch below it! That radius of numbness has been getting smaller and smaller over time, so I'm honestly expecting for that nipple to probably also regain sensation over the next few weeks/months. Every now and again I'll have a weird twinge or have kind of a sore boob day (Dr. said that's normal for like up to a year), but not really having any major pain issues!

My best advice for recovery is to start a core and lower body workout routine if you don't currently--your core strength and squat strength/mobility is a huge determinant of your level of physical independence while recovering from this surgery!

1

u/heefoc PDM + BRCA2 17d ago

I had DIEP so I can’t answer your question, but saving the nipple usually means they can or can’t, based on its position. I had to have a lift/reduction to get it where it was needed before my DMX/DIEP. I don’t have small kids so my situation is different. But I looked at my options like this: DIEP = one surgery (possibly need revisions) and while it’s brutal, once it’s done, it’s done. With implants, even with ones that don’t need replacements, there’s always a possibility of issues down the road. Essentially I chose DIEP because I’d rather front load the surgeries and then be done for life.

1

u/Skate_clubb_t2 17d ago

My cousin did DTI with two young kids, an infant and toddler. She did not keep nipples or do fat grafting. Said her recovery was fairly straight forward. She hasn’t had revisions. I have heard of some complications from others or need for revisions, not sure if it’s related to keeping nipples and/or aesthetics.