Aug 2, 2020 10:34AM
Had DIEP flap reconstruction (L total mastectomy in January, R nipple/skin sparing happened with DIEP flap) eight weeks ago and it has been so much more difficult than I anticipated. I've had foot/leg reconstruction and smaller abdominal surgeries as well as the mastectomy/lymph node surgery in January, so I thought I had an idea of what to expect, but I've had more pain, slower recovery, and more difficulty emotionally than I anticipated.
I am now physically getting back to where I can do more, which is great. I still have more nerve pain than I thought I'd have at this point, and was surprised by things like how the area of numbness wraps all the way around to my back. I found it upsetting that my belly button was moved (I guess I should've anticipated this?) and it's about six inches higher than it was before. With so little feeling on my entire torso + nerve pain + stuff being moved and shaped differently, I just don't feel like it's my own body I'm looking at in the mirror. It's very odd. I adjusted to having one breast much easier than this surgery, which was supposed to make things feel more "normal" again.
I've been having such a hard time I'm considering whether or not I want to do the next surgery--liposuction and revision. Another 2-3 weeks of recovery and again adjusting to a post-surgery body sounds exhausting. More pain and numbness and difficulty.
So... did anyone with DIEP flap have a hard time after the initial surgery, and then find improvement after subsequent ones? I'd love to hear good or bad experiences.
12/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+
1/30/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Aug 3, 2020 09:58AM
I had DIEP reconstruction after left mastectomy in Jan 2019. I didn't have the same issues you are having so I can't help you with that, but I did have issues that I rarely hear mentioned, like huge amounts of swelling in the hip area, feeling like I have no real waist. I am heavy and now have what some call their "muffin top." Because I was previously radiated, which caused severe burns in 2003, I had large wounds on my breast skin that didn't stop bleeding until July of 2019. Time did make the wounds heal and the swelling go down. I am getting more used to my new body shape. I do now think, given my diagnosis, that however imperfect, it is the best outcome I could have. My plastic surgeon really did a great job surgically, I just wish he had given me more information on what to expect. On his behalf, I was in shock due to second cancer diagnoses after 151/2 years, so he may have given me more information and I just didn't process it. I did not have nipple sparing so no nipple on the left side. I did not have any further surgery due to having very bad veins.
I hope somebody else here can relate to what you are going through. Weekends are typically slower on here, so hopefully just bumping up your post will help get some answers for you.
6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+
12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)