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Seeking DIEP recovery stories

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  • NicInTexas
    NicInTexas Member Posts: 18
    edited January 2022
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    Hi there PandaPoo!

    Sorry you have reason to be here, but glad you found this forum. It is so helpful!

    I can say that I am pretty much back to normal now (a week shy of 3 months out), so I hope that gives you comfort. I've actually been pretty close to normal for a while now. Your measurements are almost exactly mine. I wasn't a typical DIEP flap candidate either, but I really needed the body fat relocated there to give any future implants a chance to survive due to my prior radiation. Thankfully, having 2 kids left me with some belly fat to work with. I had been dieting prior to my diagnosis, so I was really down in weight. It crushed me when the breast surgeon said she really needed me to eat some junk before the PS saw me. I had worked so hard to get where I was. Anyhow, it all worked out. I was fairly flat-chested before, and my left (non-cancer) side is just about where I started, but my right side was already a bit smaller due to the earlier lumpectomy, and I think they really took as much tissue out of there as possible to ensure clear margins, so I am not quite right-sized there yet. I am planning to get that fixed at some point in the near future.

    Regarding my BMX/DIEP surgery, it was 6-7 hours. I was in ICU for 3 nights and a regular hospital room for 1 night. They monitor the blood flow in the relocated fat very closely to look for issues, so I was happy to be there. My PS said most of the issues occur early, so he feels better keeping a very close eye those first few days. I started back to work half time from home at 2 weeks and then went back full time in the office at 6 weeks. I'd say I had a very uneventful recovery - the drains were my biggest complaint (you can probably find a post where I complain about them here somewhere). I also had one of the internal sutures get turned around and pop out. That was not a big deal but it was an annoyance. The PS clipped it, and it has healed nicely.

    Regarding the Spanx, I had two pairs that I wore (at the same time) for the first 4 weeks. I did buy them before the surgery. One pair was the compression shorts looking pair (I wore those on top), but I think you could use any type that will compress your midsection appropriately as that's what the goal is. One pair was not the same level of compression. They were more like soft elasticy underwear. I wore those under the regular Spanx just to have something soft against my incision when I started back to work. Necessity really becomes the mother of invention when you are going through this. We all come up with some crazy things to make it work.

    Good luck - I pray you have the same experience I have had!

    NicInTexas

  • trishyla
    trishyla Member Posts: 698
    edited January 2022
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    I know it sounds really weird, PandaPoo, but the best advice I can give you is to build up your thigh muscles as much as you possibly can before your surgery. Since you won't be able to use your arms or your abdominals, they will be your go to muscles. Everything from getting up off the toilet to rolling out of bed will be easier if you have strong thigh muscles.

    And as far as positive stories, I was 58 when I had my BMX with immediate DIEP flap reconstruction. I'm not going to lie. The first couple of days were horrendous. But, and this was a big thing for me, I woke up from surgery with breasts. Warm, soft breasts that looked and felt like the real thing. I never felt mutilated.

    I healed pretty quickly once I got out of the hospital. I was dancing in high heels at five weeks out from my surgery. And I have never once regretted my decision to have DIEP flap.

    Good luck. I hope everything works out well for you.

    Trish


  • PandaPoo
    PandaPoo Member Posts: 6
    edited January 2022
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    Thank you so so much NiclnTexas and Trishyla. I'm turing BIG 50 in couple weeks. I joked with my plastic surgeon that she could give me the best 50th birthday present - cancer gone, nicer boobs, flat tummy. LOL. I'm still waiting for my surgery date. Very antsy. And once I get the date, I'm likely to have to wait for another 6 weeks or so. All these waiting are killing me!

    Sad

  • a_nic_
    a_nic_ Member Posts: 13
    edited February 2022
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    Hi @Pandapoo

    I just hade DIEP a week ago today. Surgery took right at 6 hours and I spent 2 nights in the hospital. Normal room, no ICU. Recovery is hard but manageable. I was up and walking the day after surgery. I will suggest some back strengthening exercises. Back pain is by far the worst in all of this, for me anyway. Good lick

  • charlierun
    charlierun Member Posts: 17
    edited February 2022
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    Hi, I am scheduled for. PBMX with Diep reconstruction in April and I wondered if people were able to navigate without using a walker? Is the walker necessary to prevent back pain from being stooped over?

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022
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    I'm scheduled for a DIEP in May. I currently have implants and did 25 sessions of rads in Sept/Oct. My implants are uncomfortable and somewhat painful so instead of switching out to smaller implants we're going to do the DIEP. A few questions for anyone who'd care to answer:

    Did anyone have to have their belly button moved or redone?

    How did the scar heal?

    How many revisions, if any?

    Do you have to wear a bra? Did you have an implant put in for fullness?

    What about nipple reconstruction? I had a skin sparing BMX, but could not keep my nipples.

    TIA


  • sondraf
    sondraf Member Posts: 1,611
    edited February 2022
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    I had mine late November and its healed very well, and very quickly.

    Belly button was repositioned, but it was essentially moved a half inch down or so. Its a litle weird and I don't want to touch it very much yet, but it had to be moved because when the skin was pulled down it would otherwise look weird.

    The scar is hip to hip, and tighter by the pubic area. It took a good six weeks before I was able to stand up straight and stretch with my chest back. To stand up straight at all took about 2 weeks to do so comfortably. Before that my erector spinae muscles took a lot of strain. Stomach is still somewhat numb, so its a little strange, but I LOVE not having a menopausal fat roll!

    Scar has healed very well but I religiously moisteurise/massage the scars daily with both oil and unscented lotion, in slow circular motions along all the scar areas. I have had some fat necrosis lumps in the breast recon that gets some additional focus. However, my new breast more or less moves and hangs like the real one, and that was from about 8 weeks post surgery.

    I had to wear a bra day and night first 6 weeks. At that point plastic surgeon said he didn't care if i did, didn't, underwire or not. I still like to wear a front fastening post surgery bra at night as I don't know, gives me some psychological comfort I guess! And I still am wearing no underwire bras, although I think I will go back to underwires after my 12 week check up. He cut along my existing reduction scar line so it wasn't exactly against my ribs or anything.

    Pre-surgery I had my blood vessels mapped and it turned out I was 1 in a 100 with only having one deep epigastric vein thing (most people have two, one either side). In addition, scans showed the vein was wrapped around stomach muscle,and didn't insert or go through it - so my abdominal muscles did not need to be cut at all. To that end I havent had to wear the spanx longer than 3 weeks, although I do put them on if I am feeling uncomfortable. I only wore the compression to help reduce the swelling.

    Nipple recon is TBD, although I think I am going to go with tattoo only. My other nipple doesn't do anything anyway and is mostly flat all the time, so I dont see the point of getting a new eraser nib put on. It also looks like I will have five sessions of rads, but others I have read who have done that post DIEP have not had issues.

    All in all I would do it again, Ive been extremely happy with the results and other than the overnight in critical care unit, and a few days in the hospital, its been a pretty easy recovery. My advice: get the best surgeon you can who is specialised in this surgery. Mine does this day in and day out and was extremely skilled to where I had the mastectomy, node removal, and DIEP all done in just about 4 hours.

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022
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    Wow Sondra thanks for answering my questions. It really helps.

    The surgeon who will do it the surgery does specializes in it and works very closely with my PS.

    Did you have to have any revisions? Do you mind if ask about your body type? I'm curvy and am wondering about dog ears at the end of the incisions on the bell after the first surgery. It was explained to me that the initial DIEP is to ensure the blood vessels are attached properly and any sculpting/revisions are done after, and I understand that. My PS is very adamant on me feeling comfortable with the way I feel, and for that matter, that I am happy with how I look, which I am very grateful for. If it wasn't for the fact that my implants are so uncomfortable and causing issues with my neck, shoulders and back, I like the way they look, although a bit big.

  • beebee22
    beebee22 Member Posts: 45
    edited May 2022
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    Thanks everyone, I read some really positive experiences on DIEP Flap here. My surgery has been arranged end of May. I need to make a decision as soon as i can between DIEP flap and implant. At first, am thinking to go for implant, after given further thought and has read these posts, I am now leaning toward DIEP flap. I initially choose implant because fast recovery, shorter hospital stay, no scars on tummy, only one wound.

    That said, provided the aesthetic effects of the breast with DIEP flap, i think i can now accept: longer recovery, longer hospital stay, scars on the tummy with DIEP flap surgery.

    Can I ask about your experiences on the scars and possibility of wearing bikinis:

    1. Have your belly button being relocated down? Is it awkward aesthetically? What bout the visual effects of wearing a bikini?

    2. Can bikini hide the bone to bone scar on tummy?

    3. Can you still do abs exercise?

    4. Do you need recliner for night time sleep?

    5. Is it true that the scar can only fade but will not disappear?

    Thank you in advance for your reply =)


  • sondraf
    sondraf Member Posts: 1,611
    edited May 2022
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    So Im about 5 months out at this point and can give some more info:

    - My nipple had to be removed and the scars in that area are almost completely gone - I will have a tattoo done in September, but it looks amazing post radiation and the scars have faded beautifully.

    - The stomach scar is also lessening, however I have some areas of thickening especially at the top of the pubic mound. Im not that bothered by it as it still look fabulous, but be aware that lower scar, due to where it is, will not be as thin as the cuts made to the breast as physically it needs to be tight due to location. The rest of the scar is healing very nicely into a thinner purple line. Every month it fades a bit more, and my PT showed me how to help massage the thicker areas to break the scar tissue down.

    - Stomach exercises are out for some months - trust me, you won't want to do them anyway. In this surgery when they pull down the skin, some of the stomach muscle fibers go along with it - kind of like tree roots being replanted in a way. So the stomach is very tight for a long time and eventually starts to loosen up. Mine is quite tight on the right side all the way down into the top of my leg which has caused some other problems, but light myofacial massage in the area is helping. At five months they are starting to suggest easy core exercises but from the hips and legs only, and light stomach stretching exercises. If I could find a decent pool to go swimming I would, and I think that would help a lot.

    - I don't typically wear beach bikinis, but my underwear (high leg brief) line does cover the scar. Depends on how low your bikini is I guess! If you are wearing anything with a side tie/string version that is super tiny it may be difficult to hide all of the scar at first, especially the bits on the side. If you are wearing something with a bit more coverage, say a high-leg brief or standard bikini style (or high waist to be completist)- no problem. This scar goes really low (see above about pubic mound) where Im not sure even a Kardashian would risk wearing something that small. Its so low I would highly recommend a wax before surgery because afterwards its fairly difficult to manage with a razor in the scar area. Can you take a bikini bottom with you to the surgeon and ask where the scar line will be in relation to where that sits?

    - I never had a recliner for sleep. I did get one of those dense "reader pillows" with the arms, and piled a bunch of pillows in and around that, along with stuffing a few under my knees to sleep. Amazon has those pillows (pretty cheap!) and are a good solution - you can sleep in your own bed, but still upright. Daytime I was in a normal armchair (with some pillows behind me). Some people also then use one of those travel pillows for the neck, but I was comfortable enough without that. Over time you start to be able to remove pillows and sleep lower an flatter - let your comfort be your guide.

    - The belly button thing still weirds me out so I dont look at it directly :) I wouldn't say its any different than before, it looks normal and where you would expect it to be on a human being :)

    - I have had some issues with bloating/swelling recently, although that was likely caused by drug management issues. That cleared and my waist returned, but its something to be aware of that may happen as the body heals. Also, I have no ovaries so can't comment on the impact of time of the month swelling/issues in that area.

    I think the thing to remember is that DIEP is still a major surgery and full surgical recovery will take up to a year. By that I mean the skin softening, scars lessening, shape returning, stomach muscle re-engagement. A really good, skilled DIEP surgeon will take a lot of pride in limited scars and scar thickening and shape, but there are no guarantees how your body will react to the surgery. If the aesthetics concerns are really really important to you, and given that your surgery is at the start of summer just about, then you may want to reconsider implant or accept that for the next 6-9 months post DIEP will need some adjustment in clothing and expectations. Ask about scar creams as well - there are some good options on the market (at least when I had a reduction in the US I had lots of options, not so much here in the UK), but I used bio-oil mostly and it worked very well.

    Actually, you had me looking up bikinis online to explain and I think I may get one for an upcoming beach trip end of the month. :) But something in a high leg or fold over :)

  • sondraf
    sondraf Member Posts: 1,611
    edited May 2022
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    Serendipity - sorry I missed your post!

    I am quite curvy, with a 10 inch hip to waist difference, but im also almost 5'8. I did not have any dog ears to be revised, and while surgeon thought perhaps there could be a little nip done on the side, it wasn't critical. However, I see him again in September at the 9 month mark once things have really had a chance to settle and we will see if there will need to be any revisions. I don't think so, its still pretty comfortable. The UK medical system, and my own situation, really pushes for a one and done situation, though, so I think that may have influenced surgical approach whereas in the US they may factor i definite post surgical revisions. I do wish they could/would have been able to slightly reduce my other side, but not having notes from that prior reduction surgery took it off the table (I feel in the US this would have not been an issue and a workaround identified).

  • serendipity09
    serendipity09 Member Posts: 769
    edited May 2022
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    Sondraf - thank you again for responding and giving such great information and sharing your experience.

    My surgery is scheduled for the end of August as I want to enjoy this summer and don't want to be in compression garments during the warmer months.

    My microsurgeon comes highly recommended and is known to be a perfectionist. Funny enough I asked I'm about my belly button as I have a cute one, he said I wouldn't see much of a difference.

    He and my PS think I may end up with "angel wings" as I'm quite curvy, my BS does not like to call them dog ears, so to put a positive spin on it I now call them angel wings, sounds better too :) and that I will probably need a touch up after the initial surgery to fill in the breasts and fix the angel wings.

    I'm just really looking forward to having these heavy, painful implants taken out.

    Beebee - I believe I saw you on another thread. I chose implants because it was less recovery. The only reason I'm having a DIEP is because I had a reoccurrence that was diagnosed from a biopsy done during my exchange to implants. I had to have 25 sessions and it affected the size of the breast and has caused me quite a bit of pain. Prior to I was very happy with them and found the surgery to be breeze.

  • meow13
    meow13 Member Posts: 1,363
    edited May 2022
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    Haven't been on since this new format, not sure I replied on this thread before. I had my single DIEP April 2012, my mx was simple non skin sparring. It went perfectly so incredibly well, pleased you wouldn't know it was reconstruction the abdominal skin matches perfectly in color. My scars are pretty minimal. Still happy 10 years later. The surgery was done 4 months after mastectomy it was 10 hours long. Very minimal pain in recovery, my fat transfer surgery had a bit more pain from leg liposuction but all good.

  • serendipity09
    serendipity09 Member Posts: 769
    edited May 2022
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    Meow13 - thank you for sharing your experience. It makes me feel better when I read post's like yours.

    Are you happy with aesthetic outcome of you breasts and belly?

  • beebee22
    beebee22 Member Posts: 45
    edited May 2022
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    Thanks again serendipity for sharing the info. I am eagerly waiting for this mini tummy tuck surgery but surely not looking forward the pain and recovery 😐 just pray hard that blood vessels connect perfectly and no complications after surgery 🙏

  • beebee22
    beebee22 Member Posts: 45
    edited May 2022
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    @sondraf, thanks for ur effort for the bikini search 😁 and such a good idea to bring my bikinis to the PS. I will do that before my surgery. I learned something new too - pubic mound, I will read up whats that.

    It all make sense that healing takes time, and with that in mind, I have to prepare myself mentally and physically. Some experiences about the recliner and pillows...I will prepare some of that.

    What bout your wardrobe, is that right that u wear more of front zipper/ button shirt during ur recovery and may be mths after that too? I am quite petite with a big belly (enough for one boob). From your description, is that right that waist line will disappear for a while and return afterwards 🤔

    The scar cream, I know cicacare is quite popular, bio-oil sound promising too...Will stock up some!!!! Am almost ready for the DIEP end of mth now 🥴

  • NicInTexas
    NicInTexas Member Posts: 18
    edited May 2022
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    beebee22 - I had a BMX w/DIEP about 6 months ago (nipples removed as well). Yes, there was pain, but it was bearable. I recovered very quickly (back at work from home at 2 weeks) and am very happy with the results. If you look at posts I've made on here, I summarized all of the things that really helped me (clothes, supplies, pillows) as well as some of the bumps along the way (drains - aarrgghh). I have pushed my implant surgery until the fall due to other things going on. I would be fine to go with the state they currently are in if I had to though. I had to do the DIEP to place separation between my radiated skin from prior BC and the implant - otherwise, I would have gone straight to implant. With the radiation history, they have a high rate of failure. Note I'm in the US.

    To update since my early posts, nipple scars are fading fast, and the belly scar is also lessening. Zero pain or issues.

    Good luck!

    Nic

  • beebee22
    beebee22 Member Posts: 45
    edited May 2022
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    Thanks Nicintexas :) At this stage, I am still not sure if nipple-sparing is posssible...have u already back to normal activities like lifting stuff, gym etc. Also, how's ur scar on the belly now?

  • serendipity09
    serendipity09 Member Posts: 769
    edited May 2022
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    Nicintexas - how long ago did you have radiation? Curious as I will be about 9 months out from my last session. My surgeons felt that I was good to go at 6 months after rads which is now, but I decided I would wait until the end of August for several reasons: wanting to an enjoy a summer seen the last two were a bust, not wanting to deal with compression garments and the heat and to allow my radiated skin some more time to heal.

  • NicInTexas
    NicInTexas Member Posts: 18
    edited May 2022
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    beebee22 - I am completely back to normal. I can lift, run, whatever. Belly scar has some thickening that I need to deal with, but it's lessening every day. I was actually initially supposed to have nipple sparing, but on MRI they found some things that meant it was better to just get rid of it all. Happy with the results so far - will have those added later.

  • NicInTexas
    NicInTexas Member Posts: 18
    edited May 2022
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    How have I lost all the details in my signature? I spent a lot of time updating those at my most recent diagnosis and I now only see my original diagnosis.

  • NicInTexas
    NicInTexas Member Posts: 18
    edited May 2022
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    serendipity09 - my rads were in 2014, so I had a long healing period before my new diagnosis last year. I think your plan to wait sounds like a good one.

  • serendipity09
    serendipity09 Member Posts: 769
    edited May 2022
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    Thank you Nicintexas!

    As far as your signature, please report it in the "Post your tech issues, glitches, errors etc" thread. Since the update on Mar. 1st, many members including myself, have had so many issues. It's so frustrating.

  • beebee22
    beebee22 Member Posts: 45
    edited May 2022
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    Hi nicintexas, how long after you can do nipple reconstruction? I have not survey the technique used now and how similar they can make it.

  • Iknewit
    Iknewit Member Posts: 12
    edited June 2022
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    Hello all,

    I had a unilateral MX 2 years ago and decided to do a delayed DIEP this year. This forum has been so helpful. I was wondering if anyone can comment on the upper abdominal bulging? My PS told me that if you have a fuller stomach you may have a pronounced upper stomach post surgery, has or does anyone have experience with this? I also have a umbilical hernia, has anyone had this or issues with this during or after surgery? My surgery is next week the 14 of June after being cancelled a few times.

    Thanks in advance.


  • abigailj
    abigailj Member Posts: 101
    edited June 2022
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    Hi inewit - I never heard that but can't say I had a 'fuller' belly before having BMX with immediate DIEP recon - I certainly was not slim at a little over 5'2" and close to 160 pounds at the time but was more of a plump hourglass shape and when I gained weight, it would be evenly all over and not concentrated in a particular area. I had no upper abdominal bulging after DIEP, never had abdominal hernia, hopefully others will comment on whether they experienced this. Best wishes for a successful outcome from your upcoming surgery.

    Abigail

  • beebee22
    beebee22 Member Posts: 45
    edited June 2022
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    hi Ikewit, I just had my diep flap reconstruction together with mastectomy on 27th May. 11th day post-op now, the scar still fresh and in the healing process...my PS ordered a Dual CT scan for me this Friday as the healing and infection can sometimes looks confusing...am on antibiotics too...I have not regained all sensation on my tummy yet, the belly button start to ooze too...a lot going on...anyone experienced similar stuff? Also, itchiness...but controllable with antihistamines...pain is not so much now...

  • Iknewit
    Iknewit Member Posts: 12
    edited June 2022
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    Hey beebee22,

    I hope it all gets sorted out soon. I just got a call saying my surgery is cancelled yet again, this would be my 3rd cancellation of this surgery. Iam in Toronto Ontario and don't know what is going on. The prep and mental prep and stress is getting to me..

    I hope everything is okay with your infection and hope it's not an infection at all. Will keep you in my thoughts.

  • trayala1245
    trayala1245 Member Posts: 6
    edited June 2022
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    hi,

    I am 3 months out from a double mastectomy with diep flap. Apparently I had a whatever hernia and woke without a belly button lol. Very poor communication between breast surgeon, plastic surgeon and me. I had no idea. I have to say, it’s not a very easy recovery..only saying this as I had three cesareans and this was nothing like that, at all. But, I am three months out and things are easier. I went back to work 6 weeks ago. It does get better, if you’re willing to go through it. Get binders and wear them all the time. It helps. Basically, you’ll have the diep flaP and the hernia To recover from. (And yes, I still don’t have a belly button....lol) ask them about that!!

  • jrnj
    jrnj Member Posts: 407
    edited June 2022
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    Although surgery was brutal I didn’t have any complications. There is a ton of information on the Facebook page “diep flap support group”. I read a lot about abdominal swelling but I think it is rare.