Seeking DIEP recovery stories
If you have had DIEP reconstruction, here's what I'm curious about:
- How did you make your decision?
- What was recovery was like?
- How long ago was your surgery and how you feel about the outcome?
Thanks,
Sharon
Comments
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sharon - sorry I didn't. There have been lots of posts about DIEP lately. You might try the search function.
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MinusTwo is right, there are lots of posts from others about their decision and outcomes. I’ll say here quickly that, having sensory issues I knew I couldn’t tolerate implants so it was DIEP or nothing. My surgery was long - 12 hours - and recovery was a challenge but doable. I wound up with a nasty infection that landed me back in the hospital, and had a small wound opening on my breast because of it, which has healed beautifully. Four years out I’ve not had stage 2 surgery so I have no nipple and need to clean up my abdominal scar (after COVID) but I have zero regrets about my decision. For the most part my foob looks and feels real and I generally forget it’s not. It’s warm and soft (and sagging a little now - naturally!) For me, this was absolutely the right decision, even with the challenges along the way.1
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I echo NancyHB - I had a few complications too and it's a long surgery and long recovery but 5 1/2 months out I am very, very pleased with the outcome of my skin-sparing BMX with immediate DIEP recon. As MinusTwo and NancyHB said see the recent posts on DIEP (including one I did a few minutes ago today with a lot of details on my experience) and I also recommend reading the 2018 DIEP thread for a lot of good info - several women there had delayed DIEP with TEs before opting for DIEP.
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sharon0706, I had delayed DIEP over the summer. I didn't have expanders. My decision was made for me because I was not a candidate for implants, but I wouldn't have gotten implants anyway. I have auto-immune disorders and I think I would've have issues with them.
My surgery was only a few hours long (two surgeons) and I didn't have any healing complications. Recovery time was about a month, though I still have abdominal weakness that I'm working on. It's a tough surgery and recovery, I won't lie about that.
I'm about to go in for my second surgery to tweak my cosmetic results, but so far, I'm very glad I did it. I look more like my old self and I don't have any feeling of anything foreign in my body.
Good luck with whatever you choose!
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I had single DIEP. I had no issues with infection. Spent three nights in the hospital. I did have several subsequent surgeries for tweaking. I thought BMX recovery was much worse than DIEP. So glad I had DIEP.
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- How did you make your decision? I did not want implants that had to be replaced every 7-10 years. I also did not want issues with implants moving/flipping. The thought of getting expanders did not sit well with me either. Or getting fills every month or so until I reached the desired size. I wanted one and done. My own tissue. One long surgery/recovery and then finished. That was VERY appealing to me.
- What was recovery was like? Recovery was long and a bit rough, but do able. Honestly, the worst of it were the drains. They were such a hassle, but needed. Sleeping was difficult, since I'm a side/tummy sleeper and I had to sleep on my back. My abdomen was SO stiff and tight, which made walking uncomfortable. But really, it's not something that can't be done. Lots and lots of rest, pain pills, and moving slowly for a few weeks. Each week gets better.
- How long ago was your surgery and how you feel about the outcome? My surgery was August 20, 2020. My revision surgery was November 25, 2020. I am VERY pleased with the outcome. They look and feel like real breasts. I am extremely happy and would suggest this surgery to anyone. Just make sure that you have a surgeon with LOTS of DEIP flap experience!0 -
I had delayed DIEP in august, I did not want to have something foreign in my body and I got to lose abdominal fat (win win!), also did not want to have to redo surgery years from now...recovery for me was able 3-4weeks after that I was good to go! The BMX was a tougher recovery for me as well. The drains are the worse part and once the last one was removed at 3 weeks I was good to go! I am set to have the second phase surgery in a week...will have liposuction to even out the boobs (they look amazing to me!) and will have the nipples reconstructed as well! Good luck, let us know what u decide!
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My surgery was 7 years ago. I have no regrets. I did a lot of research and met with several doctors before I made my decision. My surgery was long, 12 hours. The recovery is slow but not horrible. The drains suck, but they are a temporary (1-3 weeks) nuisance. If you are a side/stomach sleeper, it is hard to sleep on you back for several months. I had my surgery in March 2014, and ran a half marathon in October, and had my second follow up surgery two weeks later. I had my nips tattoos about 6 months after that. Do your research and make the decision that works best for you. Good luck!
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BMX in May 2018. Had implants but were so unnatural. Had DIEP in June 2020 and overall pleased. I need options on nipple reconstruction.
My husband cheated after 25 years. I’m so self conscious and devastated. I just want to look normal.
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Just had surgery 11/9/20. Single flap surgery, delayed due to COVID. Had a single mastectomy with TE placement 8/19. My breast surgeon had me speak to plastic surgeon (I might not have otherwise). She thought it was important to know all my options (after diagnosis). I did not want implants and decided on Diep.
Diep is a BIG surgery. I was not really prepared for the discomfort. The mastectomy was really (physically), not that bad. Two days in the hospital and while drains are annoying, I was moving around pretty quickly. TE’s are uncomfortable, but doable. With Diep, I was inThe hospital for 5 days and the abdominal part of the surgery is painful and makes it hard to move around.....But it does get better! 6 weeks out, I feel back to “normal”. I am also happy with the results. I think it was important for me to try to move on from last year
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- How did you make your decision? I initially went with implant reconstruction after bilateral mastectomy in 2017. After my exchange surgery I had (proton) radiation and common side effects kicked in (capsular contraction, breast moving up) so symmetry suffered. I consulted with 4 plastic surgeons, all recommended DIEP flap. I hesitated as I'm fairly slim and thought there might not be sufficient tissue. After a year of going back and forth it felt right and I scheduled surgery
- What was recovery like? it was way easier than I thought. The first week after surgery was certainly rough but I didn't need any narcotics, not even right after surgery. I left hospital after 2 nights. My surgery (bilateral DIEP) was only 7 hours - I picked a very skilled surgeon. The worst things were my very tight abdomen in the beginning and a small infection spot which started oozing. The oozing stopped after 2 days and everything healed nicely.
- How long ago was your surgery and how you feel about the outcome? DIEP surgery was September 25, 2020. Revision surgery was November 3, 2020. I am extremely pleased with the outcome. They look and feel like real breasts - it's MUCH better than implants. And my tummy is so flat - it just looks amazing and I really love this side benefit. It's very important to pick the most skilled DIEP surgeon in your area and everything should be fine.
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Hello girls, going in next week for a double DIEP flap surgery. I live alone and had someone coming to look after me for the first 2 weeks out of hospital. Now she is reluctant to come because she's afraid of COVID and has to fly to get here. I'm trying to get a read on how much help I'm going to need post surgery since I live alone. Another friend has offered about 3 or 4 days post surgery to help me. Will this be enough?
Thanks
Indahood
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Hi Indahood - for me that would not have been enough but I was 62 and not very physically fit before my surgery. Depending on your insurance coverage perhaps you can get the hospital social worker to arrange visiting nurse service including services of a home health aide - the social worker at my hospital said she could do that even though I am not living alone. I chose only to have an RN come to check my healing, make sure I wasn’t screwing up the drains and a PT. Maybe call your insurance too to see if your plan covers it. I also choose to spend 5 days in hospital to make sure I could get around my house reasonably well and clean myself without help after using the toilet (yes, that was tough very early on, good if you have bidet type attachment for toilet) but a lot of women spend less time and I think much with recovering mobility depends on your current fitness level. . Do make sure to read all the tips on how to sleep as comfortably as possible, put everything you use regularly between on the counters and kitchen/ dining table, etc.so you can manage as well as possible. Hope all goes well and that you have a good and unerecovery - feel free to PM me if you’d like as well.
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Indahood, I second what abigailj said about the home health nurse, if possible. They offered one to me but I had help at home and experience with drains from my MX, so I declined the nurse. I would also push for the longest hospital stay they will allow. I could only stay in the hospital for 3 days and was really ready to go home after that, but if your doctor knows that you have limited help he/she might be more inclined to keep you longer.
I needed a lot of help at home for about the first week or so after my surgery. Showering and washing my hair were really tough for a while and my husband had to help me. I also had trouble getting out of the recliner without straining, so if you have a way to get an automated one, I'd recommend it. I had problems with my blood pressure dropping from the pain meds, so be careful moving around and getting up in case you get dizzy. I used one of those sticks with the grabbers on the end to reach things without bending over or straining.
I think that 3-4 days might be sufficient depending on your own health and whether or not you have any complications from surgery. It might be difficult after those few days, but doable. I think I could've done it if I had to, just not comfortably. The most difficult thing will be the limited use of your arms, so you'll need to have everything where you can reach it easily. And of course you will not be able to drive for a while, so you'll need to stock up or use a delivery service.
I hope everything goes smoothly for you and that you recover quickly!
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Great points Whatjusthappened - I totally agree (and I actually used a long pair of tongs to reach a few things that were on a shelf above shoulder level since I don't have a grabber). My recliner is manual and it was definitely a struggle early on but had the husband to assist. In retrospect, I should have rented either an electronic recliner or even a hospital bed and had that placed in my living room since I have the space for it - insurance did cover other recovery durable goods (social worker ordered a walker that I used the first 2 weeks as well as a potty to go over the toilet - I didn't use the bowl part but DID find the outside metal frame of it very helpful to raise and lower myself from the seat) so worth investigating if you don't already have an electric recliner.
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There was a similar situation until now I do not know what to do, because of the quarantine everything was postponed(
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I'm a bit late to this discussion - sorry.
I had my DIEP November 8, 2018 and I am an outlier. For me, this surgery was incredibly easy. I'd never had any surgery before and had no idea how my body would react. I had no severe pain and any pain I had, I controlled with a mix of Tylenol and Ibuprofen. I was off all pain meds within 2 weeks of surgery. The drains were no big deal and they were all removed approx. 2 weeks after surgery.
I chose DIEP because this was my second bout of breast cancer and I decided to do a double mastectomy. I had NO desire to have foreign objects in my body, especially those requiring additional surgeries throughout the years. I was "fortunate" that I had plenty of belly fat plus I was happy to be able finally to have a bust size I could be happy with.
I was out of bed and walking the day after surgery, all without any help. I did have friends/family stay with me for the first 3 weeks after surgery because I could not lift, nor could I drive. I slept in a recliner so I didn't have to deal with bolsters and I returned to my own bed after 3 weeks. For another week after that, I had to sit up in bed to turn over, but only for about another week. I was outside walking less than a week after surgery and out shopping (remember when we could do that???) a few days later. I was able to return to running 8 weeks after surgery.
Because I had to do chemo and Herceptin, I did not have my final revision surgery until Feb. 2019. I'm happy with my reconstruction although thanks to the lack of fat cells in my belly area, I now have a roll of fat under my breasts that I never had before!
I will say that my plastic surgeon told me he'd never seen anyone recover so easily and quickly from DIEP surgery. Both he and I attribute it partially to my fitness. At the time of my surgery, I'd been a daily runner for 30 years. But I also know it's attributable to his skill and plain luck. My luck doesn't/didn't extend to chemo or hormonal therapy, so I'm grateful at least part of my journey was easy. And frankly, I rarely read any good/easy stories like mine, so I do like to share to let people know that it IS possible.
Hope this helps.
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I had a prophylactic BMX in dec 2019. Recovery wasn’t too bad. I was shocked that I woke up and my right breast was literally just sagging skin. My left was very full and looked like a breast. I was also very upset because my incision runs horizontally under my arm rather than the inframammary fold as we discussed before surgery. They dr kept forgetting to schedule my second phase so I just had the revision in November. I cannot stop crying!!! Bow my nipples point outward and my breast are starting to pull under my arms as the scars heal. After 3 PS consults I am told it is because of the incisions. I was also told they cannot repair the nipple placement because of where my initial incision lies.
I am thankful that I no longer have to deal with the panic attacks before and after mammograms any longer but I also cannot look in a mirror. Where do you have your DIEP? How were your results after the initial surgery and how did it look after
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Oh, Accarpenter, I'm so sorry you've had such a terrible time with your recon. Where do you live? Did you go to a Dr. with microsurgical reconstruction experience? Or did you use a regular plastic surgeon? I was able to go to a team of doctors who had each performed the surgery over a hundred times. It made a huge difference in my outcome. If you're in the Los Angeles area I would be more than happy to recommend my surgeon.
My story is similar to AmyCinny's. My first couple of days were tough, especially since I ended up with a collapsed lung from the surgery. But after that I healed very quickly. I was able to care for myself by about a week out. By five weeks I was dancing in high heels.
My surgeons were also shocked at how quickly I healed. I was 59, a former smoker and in good, but not great, shape. I was also two months out from my final chemo. I think mostly I'm just stubborn as hell and I hate not being self sufficient.
My biggest advice is to find a surgeon who has tons of experience. You're more likely to find one at a large cancer center or University teaching hospital. As far as prep, the best thing I did was to build up my thighs as much as I could in the weeks leading up to my surgery.
I highly, highly recommend the surgery. I couldn't be happier with my outcome. Good luck.
Trish
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Accarpenter, I’m really sorry to hear you had such a bad experience with your DIEP. Like Trishyla I was older (62) and a former smoker and unlike her not very fit. I did have some wound healing complications both at one side the bikini line incision wound and an infection in one breast but aside from a divot where I list some of the transplanted abdominal fat in the recon breast that had the infection I’m very satisfied with the outcome. I had skin sparing and my nipples are where they should be largely, one is slightly lower but should be corrected when I have fat grafting to smooth things out in a few months. If you are in the NYC area I would highly recommend my PS at Weil Cornell who has done almost exclusively breast surgeand abdominoplasty for a good 10 years . Please PM me if you are interested. I really hope no matter where you are you can connect with a breast recon specialist of that caliber who can help you to a better result.
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Thanks to everyone for sharing your stories. Very helpful to me.
Accarpenter, your experience sounds extremely traumatic. I hope you are able to connect with the care you need to get the results you want in the future.
Trish, tell me more about the thigh-strengthening prior to your surgery. Was it helpful because your thighs somehow compensated for your weakened abs? What exercises did you do?
Thanks,
Sharon1 -
What I did, sharon0706, was to do as many different targeted thigh exercises that I could. Squats, leg lifts, power walking, you name it, I did it. My reasoning was that without abs I needed something to help in things like getting out of bed and getting off the sofa.
And it seemed to help. I didn't have many issues with self care. The only thing I wasn't able to do for myself was stripping the drains. Other than that I was able to do just about everything else I needed to do.
I do recommend this surgery. I am extremely pleased with my results.
Good luck.
Trish
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I spent a year visiting surgeons before making a decision. My surgeon was the former PS chair at Mayo Clinic and now at Vanderbilt. His specialty is microsurgery and DIEP. Everyone raves about him.
I just cannot wrap my head everything that has happened. I am 44 and in decent shape other than my diabetes and being over weight. I show up for my surgery after over 6 months of planning. I had Tj be there at 5 and surgery to start around 6:30. The doctor comes in to break the news that they forgot to schedule the mastectomy but they did get the reconstruction scheduled. Just before noon everything finally worked out. I honestly feel that they rushed through just to get the surgery finished and hoped the fix everything in the revision. During all office visits we discussed that the incision would be I. The inframammary fold and at the revision he would do a lollipop lift. Instead a work up with a horizontal scar under my arm. My nipples are very low, asymmetrical, and as the scars heal my breasts are pulling and farther to the side. There is approximately a cup size difference r and almost in inch difference in nipple placement. While standing- if I look down you cannot even see my nipples.
so my fat my consults for a second opinion to repair have said it will basically mean starting over and no one can understand why he chose this particular approach and the doctor refused to discuss it. Apparently I am the one causing the problems,0 -
Accarpenter, so sorry you are not happy with your experience. I'm scheduled for 1/29. I was scheduled for 1/7, but the coordinator didn't know my Dr. needed another Dr. to assist and cancelled 1 week before, duh. Then I searched up the new Dr. and he had horrible reviews. So I'm freaking a little. Don't want to cancel now, too traumatizing. It's been 17 months since I lost the TEs to infection. I've had issues with communication with my Dr. Never told me about above the muscle vs below the muscle before my surgery. I asked him about revision surgery and he said lets just wait and see how it turns out. I had problems at the hospital waiting for responses and proper prescriptions. Delegates to a lot of PAs. But I do like him personally and he handled the infection really well. So I guess I have to trust him now. My second opinion was out of network, but not at a major cancer center, so money and not wanted to deal with insurance company stress played a small part in my decision. I could have gone to Rutgers or Sloan, but decided to stay with him. He is head of reconstructive surgery at the hospital, not a major cancer center. It is popular for COVID though, lol. I guess it's kind of a crapshoot no matter who you choose. You thought you had this great guy. I think they all make mistakes, especially their staff. I've spent my whole life trying to hide my saggy gigantic DDs on a petite small frame, now I just want to look like myself and am afraid they might be too small. Trying to avoid implants.
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JRNJ - hope all goes well with your DIEP and that your recovery is an easy one like AmyCinny described or Trishyla (without the lung complication of course)! I know you’ve read all the advice on how the care for yourself during recovery but if anything comes up we’re here for you. If you prefer feel free to PM me.
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Sharon,
HI! I had a bilateral nipple sparing mastectomy January 2019, with expanders placed April 2019. My left expander failed June 2019, and was exchanged with a new expander July 2019. I had NOTHING but trouble with them, including pain, deformity, and many of BII symptoms. Because I had grade 4 capsular contracture in both breasts w/significant deformities (due to the CC) implant reconstruction was no longer an option. This ended up being a blessing in disguise! Because I was forced to search for alternative options for my reconstruction it gave me a chance to find & reach out to Dr. Sullivan in NOLA. After speaking with him on the phone and flying out for a consultation I knew this was the right choice/place for me. I ended up having a DIEP flap October 2020 and couldn't be happier with my decision! Prior to seeing Dr. Sullivan I met with other PS closer to home about the procedure. Their surgical plans included losing not only my nipples, but also all of my breast skin and replacing it with my belly skin ( which is NOT what I wanted to do). I'd heard their stats of total flap failure (6-10%) and shown after photos that made me cry. When I spoke with Dr. Sullivan the first time he said "well no wonder you are afraid of the DIEP". He went on to explain that his procedure and outcomes are very different than anything I'd been told. He took the time to answer every single question I had, and sent photos of his patients that had similar situations. My DIEP recovery was much faster and easier than I would ever have expected. I had surgery Monday afternoon, and was released from the hospital Friday morning. Because I was 2000 miles from home I went to a hotel Friday - Wednesday. I had a post op Monday, and was released to fly home Tuesday. For me the worst part of recovery was the tightness in my abdomen... it's TIGHT ( some pain but doable). The worst of the tightness only lasted 10-14 days, after that I was very mobile. I took pain pills for the first 4 days, and on my flight home. Ascetically, I am so pleased, and already look far better than expected for stage 1. I am currently scheduled for stage 2 the end of March with Dr. Sullivan.
I feel blessed to have been able to have this surgery. In the beginning I wanted implant reconstruction and was so dissapointed when that was no longer an option. Now, after what I've gone through, and learned about breast implants I'm so thankful my journey included a DIEP flap and Dr. Sullivan.
Whatever your decision, I hope your reconstruction journey is able to give you the physical and emotional healing that mine has given me.
Tracie
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Wow, thanks for all the great advice. You people rock. Unfortunately I must have forgotten to press the notify me button and I missed all this great information. HOWEVEr, I am post DIEP flap surgery now. It is day 10. I think I'll be a fast healer as I am already able to sleep on my side and flat in bed. Have gone for a short dog walk (not me holding the dog leash.)
My daughter who is a nurse was able to change her schedule around so she could come help out. She'll be gone in 2 weeks but before that, we'll switch my kitchen around so there is not too much reaching.
A do have a few post op questions though. My surgery was a long 14 hour one. during the surgery I had bmx then the diep so I believe, doing it all at once adds the 2 hours to most people's surgery.
So my first concern is how much underarm "breast"? I have. It's like I have long big bananas under my arms. My surgeon says I'll fix it with liposuction. Is that what everyone is referring to when they talk about revision surgery. Is it big surgery? or just a liposuction procedure? I was not told of another surgery.
The second is Post op, my entire arm from elbow down was dead. It was incredibly painful but it seemed no one was listening to my complaints. (I was stoned for at least 3 days and a bit manic.) The IV from the surgery was hitting a nerve and day 3 after complaining non stop I finally cried and the nurse felt sorry for me and took the LARGE IV port out and replaced it with a small hand IV on the other side. Instantly the aggravated feeling was relieved and I started the process of getting my hand and arm back. However, now I have lost sensation in my thumb and in part of my arm. I have lost all sensation on the skin in the area of my left tricept and my elbow on that side aches. Nerve damage says my daughter the nurse and it should improve but slowly. Anyone else want to chime in?
Thanks for all the wisdom spread here. I'll go check that button that says I know when there is a reply.
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hi Indahood - glad to hear you’ve made it through the first surgery and that you are healing quickly but very sorry you are dealing with that nerve issue. I had same, skin sparing BMX with immediate DIEP recon and it took around 10 11 hours with first BS and then 2 microsurgeons taking over. Although I didn’t have nerve issues/ pain in arms I did have it in abdomen- I highly recommend physical therapy as long as you can get a therapist that is familiar with how to treat this kind of issue. Some have also taken gabapentin for nerve pain but I was offered opted not to. I took a few supplements that may have helped but can’t swear to it. The PT also worked with me to soften up the scar tissue a few months later both under breasts and at bikini line
I had an ‘insurance’ flap of skin from my abdomen attached under the reconstructed breasts that they put there in case my own skin did not survive. Thankfully it did and that extra skin was removed in my 2nd surgery (out patient) 2 1/2 weeks later. I had to have another out patient procedure a few weeks after that because of wound healing complications at the bikini line incision however- that pulled my skin a lot tighter and hence the nerve pain and need for PT. With massage (PT showed me really good techniques to soften them and the scars) their shape is really good, like my own when I was 40-ish. Slight side boob on one side has resolved with the massage, it was never really pronounced. My recon breasts need only a cosmetic correction for a divot of fat that came out from one due to an infection - will have fat grafting in a few months- PS said the more softened up they are prior to fat grafting the better the results will be. Hope this info helps and wishing you swift healing
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Thanks Abigailj
What is fat grafting? Clearly I didn't do enough research.
Laurie
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Indahood - it’s where PS takes fat from one area of body (butt, thighs are common sites) like they do in liposuction it the it goes into a centrifuge before being injected into areas of the breast to fill out / contour them. Some women with implants also get fat grafting for same purpose. Again, my PS recommended waiting a while - the way your recon breasts look will definitely change over next 2 to 3 months at least and also better results when tissue softens which took several months for me.
More info on fat grafting if you search the term on this site as well including experiences of those who had it of course
Abigail
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