Seeking DIEP recovery stories
Comments
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edited to fix a few typos
Hi Everyone!
Some details on my experiences in response to recent conversations regarding outcome, revision, etc.
- Although I did have an out-patient surgery at 2 or 2 1/2 weeks after my initial skin/nipple sparing BMX with immediate DIEP recon (my surgery was 23 June 2020), that was to remove the 'insurance' flap of belly skin they put underneath my reconstructed breasts in case my breast skin and nipples did not survive - that way they would still have enough of my skin to cover the transferred belly fat/ blood vessels/nerves. Thankfully everything survived.
- Well, more or less survived - as I mentioned in the past I did have some wound healing issues. One of these was an infection in one reconstructed breast and in conjunction with that there was some fat necrosis - approximately one big tablespoon's worth came out through the infection opening which was at bottom of breast (hope I am not grossing anyone out) - it didn't hurt or anything since that was maybe a month at most after the initial surgery, nerves hadn't started regenerating there yet, BUT it did leave a divot in addition to leaving that right breast a little smaller in general as a result. So, I will have fat grafting to smooth that out. I do not think I need it for anything else, I'm not going for perfection here and I'm otherwise very happy with how I look now. The recon breasts are a little smaller (D vs. DD before) the nipple on the right breast is a little lower, but that should perk up to the same height as the left once the missing fat is replaced.
- I also needed a second out-patient surgery about 6 weeks after the initial one due to wound healing issue with the bikini-line incision - you would not believe how awful and huge it looked at that time (I documented my recovery with pictures, I am willing to share my pix privately but mods don't want us to post pix on the threads so PM me if you want to see anything). It took a while for that incision to heal but now I just have the 'normal' type of post-DIEP scar now that I am 8 months post-surgery and as I mentioned I have been working with a wonderful PT and using massage myself too so it is not raised much at all anymore for most of the length.
- My PS did not want to talk about revision until I was fully healed, which I would say took me a good 4, even 5 months, and even after that, the appearance of my breasts has continued to improve as I have been using massage on them too - the scars underneath are soft, less visible, the feel/softness and weight of them overall, the way they shift around when I go without a bra, etc. all feels really natural and good. So for me, I really don't want anything aside from that fat graft (my insurance covers any and all such post-mastectomy recon procedures) at this point. Based on my experience, I would be cautious about any PS willing to do recon very quickly after the initial surgery - as I have detailed, things continued to change for the better for me for quite a while.
- Insurance in the US - the Women's Health and Cancer Rights Act mandates insurance cover post-mastectomy recon but do not know if fat grafting is always mandated to be covered even though it is implied by the 2nd bullet. There is probably more info on this site about that somewhere, but here's what I found on the American Cancer Society website:
Under the WHCRA, mastectomy benefits must cover:
- Reconstruction of the breast that was removed by mastectomy
- Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy
- Any external breast prostheses (breast forms that fit into your bra) that are needed before or during the reconstruction
- Any physical complications at all stages of mastectomy, including lymphedema (fluid build-up in the arm and chest on the side of the surgery)
Wishing everyone the best!
Abigail
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Whatjusthappened, Thanks about telling me about the facebook page. I joined. I posted my picture and some people said they have never seen pictures that bad posted on the site. So that really sent me over the edge. But others provided support and that really helped.
The good news is I am healing well, no infections, open wounds, etc. I'm feeling ok, sore and tired alot, but I am cooking and cleaning. I see on the site what you said that many have their flaps closed in phase 2. But my Dr. has never said anything like that would happen. Also many have circles and vertical incisions, instead of large horizontal (uneven) incisions. I assume that is my BS fault who I did dump, and also because I was supposed to have implants. I'm trying to be patient and give it time, but is is obvious all the time will not make them look the same, they are very different. Maybe I'm being too hard on him. The right one had an infection and radiation, so he had to cut out some bad skin, making the incision much higher than on the left side. And I didn't give them a huge amount to work with. But the two Drs. clearly have different styles, and I got the impression they had never worked together before.
Indahood, I can't believe you went skiing and biking!!! I went food shopping yesterday and it totally wiped me out. I couldn't get out of bed today til like 2.
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JRNJ, the best cosmetic outcomes for DIEP are from those who do MX/DIEP in one surgery. When I went in for my consultation my PS said that delayed DIEP on radiated skin is the most complicated case, and that you'll not see these kinds of cases on the PS website galleries. So my expectations weren't that high going in. I imagine if you add in your failed TE's, that your case was pretty darn complicated. The surgery is so delicate that they really don't want to mess with the tissue any more than absolutely necessary, so I'm sure that there are things that can be done to improve the outcome after you're healed up.
I guess whether or not those horizontal incisions can be fixed depends on how much tissue you have to work with. I would start writing down some questions for your PS and maybe even share some pictures of what you would like to achieve. I don't feel like my PS really sat down and actually listened to what I wanted before my Phase 2, and I wished I had expressed myself better. I'm not completely unhappy with my results, but I think if I'd been more prepared, he could have taken care of everything in the second surgery and I wouldn't be looking at a third.
Glad you are healing up well with no infections! That is great news. Be gentle with yourself and let those scars remind you of how strong you are.
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Hello, this is my first time posting. I had a double MX with tissue expanders in 2017. After radiation, I had my exchange to implants. I was too thin at that time to be considered for DIEP. Now, thanks to being thrown into menopause & Arimidex, I have gained weight. I am uncomfortable on my radiated side & have scheduled DIEP surgery at MSK. I am second guessing my decision & getting nervous.
Has anyone used Dr. Evan Matros at MSK for DIEP? Also, any advice or recovery stories from anyone switching from implants to DIEP after radiation?Thank you & God bless you all!
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Hi Mona,
It sounds like we share a similar story. I had my double MX in 2017, too, exchange to implant surgery beginning of 2018, proton radiation from March to April 2018. My implant on the radiated side got encapsulated and shifted up, so they looked quite asymmetrical. Had my DIEP flap surgery end of September 2020. I am fairly slim as well, but there was sufficient tissue to form 2 beautiful B-cup-sized breasts. I needed over a year to decide whether I wanted to do DIEP or not. I was really nervous, but I do not regret my decision to do the surgery. It's such a different, wonderful feeling compared to the cold and hard implants. I did not have any complications, and the result is beautiful. If you have more questions, just ask!
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Hi everybody. I am so grateful to read everyone's stories. You have all helped me to decide to go forward with the DIEP. My surgery is scheduled for May. I am simultaneously ready and nervous. I am very ready to get rid of these tissue expanders.
Two questions:
- What should I ask my surgeon when I see her next (one month before surgery)?
- What do you wish you had known before your surgery?
So grateful for this community and all of your collective wisdom.
Warmly,
Sharon0 -
Sharon,
I didn’t realize how numb I would be at the tummy tuck site and below. It took a long time and a lot of that is gone but I’m still numb almost 2 years later in the center on the tummy, around the new belly button. I did have scar revision where they lowered the tummy scar and it looks great. I’d ask about compression and how long you will need it. Also will you wear a bra after or not. I did not but some women did. I also had my hospital room really warm and had to wear a warming blanket. I’d ask if they do that too. Finally, ask if they do nerve block for surgery. I was amazed with mine that I woke up I very little pain. I’m pleased with overall results. I hope you will be too.
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hi Sharon - I also that numbness OCDAmy mentioned although it’s lessened over time. Hopefully you won’t have this (as you know I’m older and not very fit) but I didn’t know how limited my upper body movements had to be to avoid screwing up the bikini line incision to the point I had difficulty cleaning myself in the bathroom (sorry if this is TMI) - Thankfully the nurse’s aide made helpful suggestions so once I was home I could manage. I also used a walker for my first week at home. If the social worker at your hospital offers a toilet frame and walker and your insurance covers it as mine did I suggest taking him/her up on it just in case. My PS had me wear an awful abdominal binder for several weeks as well as a surgical bra - ask your PS if she has patients wear either or both and for how long as OCDAmy suggested
I wish you the best! Abigail
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Whatjusthappened, It appears many on the facebook page had radiation before DIEP and they look AMAZING, but the Dr. put tissue expanders in before radiation. Since my tissue expander was removed due to infection, Dr. said my skin was stuck to my chest and had to be peeled off. I told my Dr. what the facebook page people said, close the flaps, fat grafting to fix size discrepancies, fix side boob. He said we can do all that. It just bothers me that I have to ask. Why is he not looking at me and seeing what needs to be fixed. He said some people don't want to be overwhelmed with information, so he takes a wait and see approach. I said you know I am not one of those people. I need information! It seems to me the very experienced surgeons plan phase 1 and phase 2 knowing you can't get it all right in one surgery. I don't know whether to continue to trust him, or to go elsewhere. I will probably for sure get another opinion at either MSK or Rutgers. It's just mentally draining. I've been in a bad place, but slowly coming out of it as I feel better.
Mona2, I didn't have implants, but I had failed tissue expanders. I think you will have better result because the skin is expanded. There are many stories on the DIEP Flap Support Group facebook page about people who switched from implants to DIEP with amazing results. Please keep us updated, I want to get an opinion from MSK.
Sharon0706, What type of incision do you have? I would ask what the flap will look like, lollipop, small football, large football. I was really shocked at what the flap looked like. I have small footballs. I asked him if I was getting a football flap and he said NO. I don't think he understood what I meant. Lollipop is much better looking. Check out the DIEP Flap Support Group facebook page there are a bunch of pictures posted. I would also ask how long you will be in the hospital. I was in for 6 days. They did not pressure me to leave until I was ready. Other things to note: I was in the ICU for the first day, they didn't feed me in case I needed to be sent back to surgery. I had to inject myself with a needle after I came home to prevent blood clots. I was not allowed to wear a bra or apply any pressure to chest. No caffeine. Had first cup today and am feeling very energetic, lol. My Dr. does not use compression binders, others do. I was heavily medicated the first 2 weeks. but the constipation was worse than the pain, so after two weeks I dropped the vicadin. You may need something to manage drains, vac pumps, heart monitor, like a lanyard. My idiodic hospital didn't even provide anything in the hospital. It was a nightmare. After I came home, it was tougher than bmx. I could go to the bathroom myself and manage my drains and medicine. But I stayed in bed for 2 weeks and my husband had to feed me and I didn't drive for 3 weeks. Started cooking and cleaning after that a little bit each day.
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JRNJ, it's a tough call on whether to trust your PS on another surgery if you're not confident in his abilities. I think another opinion is always a good idea. The good news is that you have plenty of time to think about it before you have to make a decision on what to do.
Continued thoughts for your physical and emotional healing.
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Hi all. Thanks in part to the stories that you've shared, I am finally having the DIEP flap reconstruction a week from today. I appreciate you all sharing the ups and downs.
After looking at my abdominal CT scan, my surgeon told me I might need to have a delayed DIEP if the abdominal blood vessels aren't what they need to be, in which case the surgery would be delayed by three weeks. I'm trying to find the balance of lowering my expectations and also hoping for the best.
Thanks again.
Sharon
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Hi Sharon - fingerscrossed that everything goes well and you have a great outcome. Again, please be patient with yourself, take it easy and don't overdo physically while you heal and remember that you won't see the actual results until the swelling goes down etc. which too a few months for me
let us know how you're doing when you feel up to it.Abigail
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Good luck, Sharon. I'm now 4 months post op and feeling pretty well if not a bit tight in areas of my recovery. I have to remember to stretch otherwise I might not get my flexibility back.
I am hoping you get it all done at once as you would wish, but I'm sure either way it's a great choice. That's coming from post op. My recovery wasn't too difficult just slow. Not much pain so that's all good.
Cheers DIEP sista,
Laurie
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Sharon, I know how hard it is to wait once you've made a decision on what you want to do. I hope everything looks good for you to go ahead as planned. I wish you a speedy recovery and good results.
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I had DIEP about 18 months ago. I did not want to have implants and deal with upkeep the rest if my life. I would do it all again. I had a double mastectomy on the same day, so that added to my recovery time. It wasn’t easy and the first week I questioned my sanity! I improved each day and now I am healthier. I still have not had my revision surgery yet. I love my PS, so make sure you have one skilled in DIEP.
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Hi all. Well, I was supposed to have the DIEP on May 10, but after opening up my abdomen the surgeon decided that the blood flow in my blood vessel wasn't strong enough to perform a successful transplant. So she "clamped" a bunch of blood vessels with titanium clips and sewed me back up. The idea is that since some of the vessels are clamped, the blood will have to travel to other vessels, and those other vessels will become more robust. I was sent home with 80 cm of incisions on my belly and two drains.
It's been a rough three+ weeks, I must say. Pain management is a big deal. Gapabentin ended up helping me more than Oxycodone. I still have both drains in. My surgeon's requirement is that the output must be less than 20cc two days in a row, and my body just hasn't gotten there yet. I am trying to be patient and grateful but it is really not easy.
Next surgery is June 14. My hope is that the DIEP will be successful and by the end of the summer I will be feeling more like myself again, whoever that is at this point. All the losses from going through this BMX, chemo, DIEP process have been accumulating. I am so ready to have a body that feels healthy and feels like mine.
Thanks for all the encouragement.
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Oh I'm so sorry Sharon. I can only imagine how crappy that must feel. I'll keep my energy on your success June 14th. I really hope you don't have so much pain. I have really now had any pain because when they do the entire surgery, they cut so many nerves that you truly don't feel much. Don't worry though the sensation slowly comes back as your nerves repair themselves. I'm almost 6 months out now and honestly I don't feel the same healthy body, but I'm alive and enjoying my life. I lost one of my best friends a couple of months ago to her cancer. SUCKS
Love to you, flowing your way from me.
Laurie
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Hi Sharron - I've been wondering how you were doing and although of course am glad to hear from you, so very sorry to hear what you have been going through. At least the surgeon recognized the situation (guessing it was a borderline kind of thing that didn't show up on the abdominal MRI they do before deciding if DIEP is possible) and knew measures to take to hopefully correct the situation with the blood vessels. As far as pain goes, I didn't find gabapentin very helpful (maybe I didn't give it long enough to work from what I read later) so used the oxy for a good amount of time, interspersing it with a combo of ibuprofen and paracetemol aka tylenol and then went to a topical opiate-based cream (it doesn't get into the bloodstream so doesn't make you feel drugged at all) that a pain specialist MD ordered up for me from a compounding pharmacy...but those days are long past me, no more nerve pain or other pain many months. From what I've read from others, my experiences with pain were not as common as what the majority of women experience so I'm hoping your pain is getting more manageable, and that it will be better soon after they're able to do the DIEP in a few weeks once the initial few weeks after the complete surgery have passed.
Please let us know how you are doing, keeping you in my thoughts and, like Indahood, sending love and healing vibes your way!
Abigail
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Hi all, especially Abigail and Laurie!
Well, I did it! I am day 8 post-op.
The surgery went well. There were no complications, thank goodness. The day after surgery I was the most physically miserable as I have ever been in my life, but every day since then has been better.
Four drains are such a pain, but every day I remind myself they are helping me and they are temporary.
My body is appropriately mauled and I try not to look at it all at once. Most people who examined me in the hospital were very impressed, but I started to get the feeling that they said that to everyone. I know it will start to look better in time.
One of the biggest sources of discomfort at the moment (besides the drains) comes from having to walk like a hunchback in order to protect the stomach incisions. I think it annoys my whole family. But again, it's temporary. I live in a fourth-floor apartment and I just walk around the apartment. Once I am cleared to walk upright I will be happy to go outside for some short walks.
I am also extremely raw emotionally. I cry more than usual. I am hyper-focused on the fragility of life and the mortality of myself and everyone I love. Trying to ride it out for a couple of weeks before I make the decision to increase my psych meds.
Thanks to everyone for all your support. I keep reading on the DIEP flap Facebook group that many people start to feel better after week 3. Do any of you remember when you started to feel like yourself again?
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Congratulations! Sounds like you're doing really well. My only advice would be to keep moving as much as you can, and start to stretch (gently), especially wall crawls. Those really help with getting your mobility back in your arms.
Three weeks sounds about right for feeling more like yourself. It's a process, but you'll get there.
Best wishes for continued healing.
Trish
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great to hear from you Sharon0706 and so happy to hear the surgery went well this time!
Yes, the 3 week mark is when I was able to straighten up and was off the really hard drugs (although I still took a comb of ibuprofen and acetaminophen for a while due to that wound healing complication I had on the abdomen. So barring anything like that I think you’ll be feeling a good deal better then.
Totally agree with Trishyla re: stretching- If you can get home visits from your insurance with a pT during your recovery that would be great. Also I recommend starting scar treatment as soon as PS clears you to do so - that’s important for comfortable mobility too
Best wishes for continued good healing and let us know how you’re doing!
Abigail
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Hello everyone,
Thanks so much for sharing your DIEP flap surgery stories pre and post. I am due to have DMX with DIEP flap at the same time on 7/6. I feel I made the best decision for me but I am very anxious and not sleeping well. The thought of the long surgery is causing me the most concern, as does the recovery fears. I'm tough and know I'll get through it, but it's this waiting now that's just freaking me out!
One thing I wasn't aware of is that the belly button will be removed and reconstructed but it will require daily removal and cleaning of the 'button' they put in. I haven't seen any mention of that here, did any of you experience that? If so, how long did you have that plug/button in?
My son will be only able to do a few days with me post surgery and maybe a couple trips to the doc visits after, so I'm also worried about being alone. Abigail you stated you used a walker and a toilet frame, did you also use a shower seat? Did anyone else use these things and do they help? I'm 55 and in ok health so I don't think I'll fall, but things can happen. I don't want to run around getting things I don't end up needing, but I also don't want to be stuck in bed and can't get out or the shower either! :-o
Appreciate all your stories...full exposure ones and all. It's better to know some of the possible things that can happen and try to prepare yourself mentally for, at least somewhat.
Best of speed recoveries to you all!
~Teri
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Dlphnsgl, I did not have any special care of the belly button. My plastic surgeon put an earplug in it to keep it from closing up, and I changed it out occasionally. Aside from washing it when I took a shower, there was no special cleaning regimen. My new belly button looks really good.
I didn't use a walker, shower seat, or anything of the sort, but anything you have available to you, I would use, especially if you're going to be alone. I think the hardest thing for me was using the bathroom, so the walker would probably be helpful with that. I don't know if I would have had much use for the shower seat.
I just had a phase 3 surgery for DIEP, and I got dizzy and almost fell just yesterday. I think it was from the pain medicine, and when I felt it coming on, I just plopped myself down on the floor and waited for it to pass. You just have to move slowly and you'll be ok.
What you'll definitely want to do is set yourself up a little "command center" where everything is in reach. For me it's a recliner with everything I need in arms reach. Medicines, phone, computer, chargers, remotes, etc. As this is my 4th surgery, I feel I'm kind of a pro at it now, lol!
I wish you all the best with your preparations. I know that the week leading up to surgery is nerve-racking, so make sure to do those things that are calming for you.
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Hi Teri
Yes, it’s really a long surgery having it all at once as I did and as you are planning but aesthetic results tend to be better and that was important to me and glad I did. i didn't have any special device for my reconstructed navel, was told to gently cleanse it twice a day when bandages came off.
I have a built in seat in my big shower but used it only to hold a basin that I used with my handheld shower for washing, not sitting. Speaking of washing, the hospital sent me home with a package of the disposable washcloths they use - very helpful since they are so soft
The hospital social worker arranged for all the durable medical equipment, it didn't cost me anything (I have pretty good insurance through my employer but hopefully yours will cover it too). If one doesn't come see you ask for one. I think she's the one who also arranged the visiting nurse and in-home physical therapist visits.
I spent almost all my time during early recovery days in my recliner so totally agree with the 'command center' concept recommended by Whatjusthappened.
Lastly, I stayed in hospital 5 days, some stay less time, but if you aren't feeling stable enough to manage the basics at home, do consider staying (5 to 6 days is standard in UK from what women I know there told me even though it's more like 3 days here in the US)
Sending best wishes for a great outcome and quick healing!
Abigail
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Thank you so much Whatjusthappened and Abigail! I like the idea of a 'command center'. I'll get everything together on my counters this weekend so I'm ready.
It's gonna be weird to have a new belly button and it sounds like it's not that bad, so that's good. I guess between the DIEP Flap and DMX and all the tubes, that will be small potatoes, ehh? ;-) Wow, Whatjusthappened...that's a lot of surgeries...you ARE a pro!!
Thanks for the idea of asking for hospital social worker to see if I can arrange at home nurse care, Abigail. I believe my insurance will cover it but I'll need to check. They told me I'd be in the hospital 2-3 days which didn't seem like much given the major surgery in two locations. When I had a c-section in 1985 I was there 5 full days. But I know they've come a long way on post surgery recovery these days.
Appreciate all the well wishes and advice! So glad I checked out this site...you ALL ARE THE BEST!! Here's to speedy recoveries to you all as well! Will post an update once I've got some energy post surgery. BIG HUGS to you all!!
~Teri
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hi. My surgery was June 23. I needed help with my drains, refilling my water, waking me up to take meds, getting me something to eat if I was hungry. I'm 10 days Post op and have way more strength/stamina. I really hope your friend changes her mind and comes to stay with you. The less you do in those first couple weeks the better your body can heal. Take care.
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Hi everyone!
My name is Crystal and I had a bx two years ago 6/3/19 with immediate Diep/Flap reconstruction. I developed lymphedema in my left arm and breast (not the initial cancer breast). I pretty much have my left arm lymphedema under control, and so far the swelling in my breast has subsided after wearing a compression bra and using a machine. What I'm now experiencing and why I am reaching out-- is a feeling of "fullness" or heaviness in my breast? I'm just wondering if this new sensation is a result of nerve regeneration or something else. My PS seems to think it is PMPS-- but it isn't painful-- just uncomfortable. Has anyone had any weirdness in the feeling of their reconstruction? I'm constantly massaging them to "calm" down.
Thanks for any feedback in advance 💜
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cwins1218, the only thing that I have had at all similar to what you're describing is a pressure that went around my chest (I imagine that it is the "iron bra" sensation that some women have described. It felt like I was wearing a bra that had ridden up and the band was around the fullest party of my chest. It was not painful, just uncomfortable, and I was constantly trying to pull my bra down when it didn't need to be pulled down. Like you, I was also constantly massaging trying to get rid of the sensation. Mostly this feeling was pretty soon after a surgery or revision, and so not as far out as you are.
I think since it's been a couple of years since your surgery, it night indeed be some nerves "waking up". I've heard of that elsewhere in the forums. I also have LE, and sometimes I have that full feeling in my arm but it isn't visibly swollen. I think each of us experiences these things differently, so it's hard to say what it could possibly be.
I hope it's short lived and doesn't cause too much discomfort, whatever it is. I wish you well!
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Hi Crystal - I had BMX with immediate DIEP recon a year ago and although I was fortunate not to have lymphedema did have sensations similar to those described by Whatjusthappened. As those have calmed down more feeling continued to return to my recon breasts so maybe there is a connection between the sensations you are having and nerves regenerating too. Glad the sensations are not painful and hope you experience is similar to mine with feeling improving.
A
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Thank you both for the feedback. I am making an appointment to see if there is any issue related to being in surgery as well. I was reading that sometimes being positioned for 10 hours (arms stretched) can cause "injury to the arm shoulder area that is helped by physical therapy. I've had two rounds of physical therapy due to the LE but may need more. It is commitment to healing that I desire so if more PT is needed- I will do it!
I'll send an update if that indeed is what it is! I appreciate you both sharing-- this forum is always encouraging and supportive! 💓
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