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Seeking DIEP recovery stories

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  • Iknewit
    Iknewit Member Posts: 12
    edited June 2022
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    Oh no, what the hell with the belly button situation, like they just decided to rid of it? was the hernia near the belly button? I really hope they tell you something about it. How did you manage the pain?

    Regards

  • trayala1245
    trayala1245 Member Posts: 6
    edited July 2022
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    So sorry for the late reply. Yeah, had no idea about the hernia. Miscommunication on many levels. Woke up and my daughters told me, not even the PS. My scar from the diep is a bit higher than what it would have been. Afterwards, I looked at the report from my PET scan and it said hernia, however, breast surgeon didn’t tell PS? I saw on my path report that it was inflamed.....news to me, again...lol. Every time I went to the PS which was every week for 7 weeks (I had my last drain removed at 5 weeks, had an infection and then cellulitis) I would FORGET to ask. But yeah, adds a bit to the recovery. I am 4 months out and still wear a binder to bed as turning over hurts without it. I hope your surgeons are more forthcoming than mine. Wishing you all the luck!!!

    Btw, had bilateral idc, 2 left one right All three stage two, grade two, with lymph node right, double mastectomy, with diep flap.

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Going in for CT of the abdomen tomorrow. I'm really starting to second guess my decision to have a DIEP. I'm scared that I'm going to go from curvy to a Sponge Bob figure (sorry/not sorry, hope that doesn't offend anyone,) I'm worried about my skin on the radiated side; wondering if it's too soon from my rads last Oct. I have so many "what ifs" right now. My surgery is Aug. 25th so I still have time to change my mind, but I'm not sure what other option I have. I see my regular PS the first week of Aug. to discuss my breasts and just left a message for the microsurgeon to discuss concerns about the belly. Ugh!!

    Am I being vain? I just want to be able to look in the mirror and feel ok with what I see (I don't right now). Not to mention the pain and heaviness from the implant on the radiated side.

    Trayala1245 - so the hernia was detected prior to surgery and they didn't tell you? Did you have a CT scan of your abdomen before? I'm assuming they saw it on the scan? Are they going to give you a belly button or is too late? I was told that I'd have a "new" belly button.

    Beebee22 - how are you doing?

    Are both of you ok with how your breasts look so far?

    Iknewit - Sorry they postponed your surgery. Have they given you a date yet?

    Jenj - going to have to check out that FB page. Thanks!

  • trayala1245
    trayala1245 Member Posts: 6
    edited July 2022
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    Hi Serendipity09,

    Yes, it came up on my pet scan. I went to the bs 1 week before surgery and she said nothing. On that report it said hiatal hernia, the path report said epigastric hernia. That’s the reason I still wear a binder a night. As far as the belly button, the PS hasn’t brought it up. I was always asking other questions. Also on the path report they actually biopsied my belly button(?) and it said chronic inflammation...no clue that was even an issue. Like I said in the other post, I had one drain left for 5 weeks, had an infection which turned to cellulitis. (Don’t let that put you off, as that’s not the norm) I put off revisions till the fall. However, I don’t have nipples either...But to hear from my daughters that it was gone was upsetting, not then as I was so drugged nothing bothered me, but after, that no one told me why. I brought it up to my BS that I was quite surprised, and annoyed that I wasn’t told before...and she skirted the issue. No joke. She had the report from the pet scan and all others as well. She never said a word. I wouldn’t be surprised it my PS just learned of it during surgery when they were looking at the disc. But to be honest, he should have brought it up during his rounds, and explained it to me. I was already butchered, how about telling me why I am missing a belly button.

    I would say look and google all you can, usually the belly button is cut in a circle and left In place to Then reposition after they pull the skin down. I saw some videos on it. As far as a new one, maybe sometimes they have to? Idk, as they certainly didn’t give me one....lol.

    Follow Dhivya Srinivasa, MD, FACS on instagram...she is amazing, many before and afters, videos, etc. it’s drdhivysrinivasa. You can ask her a question and she’ll answer. I actually found her and followed her due to her dedication to breast reconstruction about two months before my DX, as She’s just great. if I had the money, I would have flown to California to have her as my doctor. She also covers recon from implants with rads to diep.

    All in all, I do have a flat belly now...boobs still need some work. Diep reconstruction adds to the recovery though. But....you don’t have to get implants replaced every so often. Not an easy decision....wish you the best. Let me know how it goes, and if I can be of any help I will.

    Blessings,

    Tracey

  • beebee22
    beebee22 Member Posts: 45
    edited July 2022
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    hi serendipity09 and all, 7-week post-op now, definitely feeling stronger, more flex but my breast and abdomen wound not completely healed yet. Looking positive though. Still bit bloated. Belly button healed but looked red still.

    My left boobs with the abdomen fats now looked smaller after the swelling is gone (it looked way bigger right after the sugrery though). The nipple also doesnt look perky but sort of flat. PS already advised that they will never looked the same but I can consider liposuction and fat grafting may be a year later. Long way to go. I will start tamoxifen soon as a preventive measure for my right breast.

    Btw, I had high grade DCIS on left and did mastectomy n diep flap. The pathology report showed clean margin. Left is all cleared, no radiation nor chemo needed. Now is the right one I need to take care of. 5 years of tamoxifen I have to take. Anyone is on the med now? How's ur follow up? My oncologist told me bout side effects, mainly breast scan, eye scan and vagina scan every year.


  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Thanks ladies for responding, I went to edit a typo on my post and it ended up deleting it.

    I go tomorrow for my CT scan, hopefully nothing shows up.

    I have been going to different plastic surgeon websites and looking at the before/after pics and I see the scars are much higher than the bikini line. My microsurgeon told me it would be low and that a bikini would cover it. The one thing I noticed was the change in women's shape, many of the pics look like the women lost their curves; and their stomachs, above the scar, are not flat.

    Trayala - you nailed it when you said you were "butchered" I'm afraid that's how I'm going to feel. When were you eligible to have revisions?

    Beebee - my nipples were removed with the BMX, something else that really bothers me when I look in the mirror. I'd just like to be at the point where I can have them tattooed on already and look somewhat like my old self.

    Am I just being vain?

  • beebee22
    beebee22 Member Posts: 45
    edited July 2022
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    hi serendipity09, the nipple-preserved or removal..BS said he can do it if I insist but it is very much depends on the spread of the lesion, lucky in a way that pathology report showed the lesion is far awaY from ... but skin and nipple preservation also doesn't give a perfect solution...there are just way too many factors 😑

    My 'tummy tuck' incision was higher than the normal one, due to the distribution of fats. Eventually, the belly button is higher too. I want to gain back my curve and shape...have to wait until I can do gym again. I do think it's doable. Btw, the line can be covered by high waist line bikini bottom.

    I also realised my vulva structure has been 'lifted' 😆😆😆 I can see it clearer from mirror than before 😅

  • trayala1245
    trayala1245 Member Posts: 6
    edited July 2022
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    Hi Serendipity09,

    I am actually eligible for revision now, I think. However, with the lag of time it took for the oncotype test on all three tumors to come back (insurance would only pay for two, and one at a time) I couldn’t do it anymore and my last visit with the PS we decided fall. Still not sure if I will go for a nipple reconstruction Or just tattoos. Plus I wanted the summer to just be....no cancer, no surgery. Kinda like pretending it never happened..lol. Sometimes it’s too many decisions. IF and only IF, you can take your time, do it. Weigh all your options.

  • trayala1245
    trayala1245 Member Posts: 6
    edited July 2022
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    serendipity09,

    And NO, you’re NOT being vain.

    Forgot to add, I have more of a waist now than I did before.

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Beebee - that's interesting about the vulva 😂, although it makes sense. I never would have thought about that. Now when I meet with the microsurgeon I'm going to ask him about it, if not just for informational purposes, for giggles. I made it very clear ro him at my initial consultation that I'm a very shoot straight from the hip type of person and I'm not afraid to ask questions.

    Do you think that you are less curvy because the scar is higher?

    Trayala - I've been dealing with this beast nonstop since March 2020. I decided to wait on this surgery until the fall as I wanted to enjoy summer...no meds and no compression garments.

    Is your scar low on the bikini line?

    I'm going to do the 3-D tattoos for nipples.

    Are you both ok with the way your breasts look with the flaps? When I had my BMX and exchange, I had a very difficult time looking at the incisions and did not for weeks, my friend would take care of my wounds so I didn't have to look. They weren't that bad, I thought it would be much worse. I'm a bit intimidated by the thought of the abdominal scar and the flap on the radiated side if my skin does not hold together. SIGH

    Sorry for so many questions.

    Off I go for my CT scan.

    Have great day!


  • beebee22
    beebee22 Member Posts: 45
    edited July 2022
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    hi Serendipity, they removed the flap and pull the skin up to seal them tog...and that's what happened on me, could be different individually, depends on the amt of fats you have...I don't have much, this is the tight seal effects on me. I really struggle with walking upright for at least 4 weeks.

    I can see my waist line but a few things I wish that it will resolve soon:

    1. Been very inactive since surgery, put on weight, especially love handle, growing bigger. Tummy tuck removed abdomen fats but it doesn't touch on love handle, that's why have to work on it.

    2. Have not gained back my full sensation ard the belly button and lower abdomen. I say it still bloated and will need longer to see my flat tummy.

    The incision and tummy tuck supposed to be far from ur waist...it is the bloating, the inactiveness and the wound recovery affecting the overall look. Once we fully recovered, I think exercise targeting the specific area can help to resolve the issues. I am being positive 😄😄😄

    Honestly, I am happy with my decision to do diep flap, it looks more 'natural'. Just because I am doing unilatetal, i have a good reason to insist on diep flap. If Bilateral, I would have gone for implant, and may be augment them too!! 😄😄 just bear in mind, it will take time...we all have to be patient for the recovery...

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Beebee - continue being positive!! It's really all we can do, right?! It really helped me get through the last two years.

    Going to ask the surgeon what would warrant having to do the incision higher. I look at my belly and really do not think I have enough for a C cup for both my breasts. I'm currently a D cup and want to stay proportionate to my body, but ok with going a bit smaller.

    It's understandable as to why you'd have love handles now, but once you're able to work out they'll be gone. My PS told me that Stage 2 would deal with the love handles.

    Do you have "angel wings"? (my BS didn't like the term dog ears so we started calling them angel wings).

    Tracey - I'm going to look Dhivya Srinivasa up. I looked at different plastic surgeon websites and the galleries of the Before/After and am actually a surprised. I realize that this is all about getting natural breasts and making sure the blood vessels attach and flow to avoid necrosis, but the pics I saw made me sad, their bodies all looked so different and so many of the scars were jagged and "sloppy" looking after a year.

    My list of questions of for the surgeon went from five top twenty-five, lol. I thank God that they are so patient with me.They all know me well enough and know that my anxiety will get the better of me up until surgery.

  • beebee22
    beebee22 Member Posts: 45
    edited July 2022
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    hi Serendipity, i just looked up angel wings/ dog ear. They refer to the skin protrusion at the incision site right? I don't have any...all tighly sealed! You mean liposuction to remove love handle? U can have the fats moved to the breast at stage 2 then 😃 I will do a belly ring when my belly button is completely healed, as for the incision scars, mederma, laser...hopefully can be lighten as much as possible...afterall, it's bit of a memory for me 🤭 cannot be wiped off completely.

    I wonder how much fats u have for a D cup, both breasts now 😆😆

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Beebee - so glad you didn't have any "angel wings". Going ask the surgeon to try and do his best to seal me up tightly.

    I was a D before the BMX and asked to be as close to my old self as possible, but I didn't take into consideration how heavy the implants would be. I had rads after the exchange and it changed that breast completely to where it is tight and hard, again like a baseball.

    When I had my exchange and they did the lipo she eliminated my love handles, she told me that my if I have any this time around that she would take care of it during stage 2. During stage 2 if you're looking for fullness and/or have any areas that need filling in, they will do the fat transfer.

    Did you have a belly ring before?

    Regarding the scars I was told that I may be able to do hyperbaric therapy. Don't have enough info on it, but the little I've read on it indicates that it helps to lighten up scars. Def cannot be wiped away completely and that's ok with me.

  • laurencl
    laurencl Member Posts: 203
    edited July 2022
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    Thank you so much for the instagram tip! It looks like the Doctor provides some great information

  • beebee22
    beebee22 Member Posts: 45
    edited July 2022
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    hi Serendipity, i am on hiliday, thats why the late reply, sorry bout that. No, I never had a belly ring and looking forward to get one. I read that I can only have it at least one year post-op. I can wait for that.

    I will be patient snd see how's the whole breast looks like after full recovery and then decide what i needed to do for second stage reconstruction...

    I had a second opinion consultation with another breast surgeon lately and she has a different opinion using tamoxifen as preventive measure. Since I had only unilateral mastectomy in June, right breast is healthy so far...my oncologist advised me to start tamoxifen for 5 years for right breast cancer prevention...but the second opinion I had said otherwise...I am leaning towards not taking it...but have my regular ultrasound and mammogram going forward...

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Beebee - no apologies needed. Hope you had a nice time. I was out of the country visiting my father, hence my last response.

    It appears that being patient is the only thing we can do, otherwise we (meaning me) will overthink things and stress myself out.

    I wish you the best with whatever you decided going forward. It's so frustrating when doctors have different opinions.

    I meet with the PS on Wednesday and see what she's says. I've had way too much time to think about this surgery and have really scared myself out of having it.


  • avalasana
    avalasana Member Posts: 1
    edited August 2022
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    Hi,

    I am 16+ months out from my L mastectomy with DIEP flap reconstruction in the same procedure. I had nipple reconstruction and abdominal scar revision with a L re-exploration (Oct 2021) because my margins were up against the skin and too small to be sure everything was gone the first time around.

    My L breast is so pretty. It's funny to say that, but my PS did amazing work; I am also now a full cup size larger than before (D to DD). My tummy is flat; he made my new belly button pretty too and repaired a small umbilical hernia that I didn't know I had. My scar is flat, low and under my bikini line. The abdominal scar revision was done because I had 'puppy ears' (a little skin flop on each end) and he fixed them nicely, but the ends peek just above my bikini at each hip. They are small and healed really well, so not a big deal at all.

    I have done my first nipple tattoo; I go back in a few weeks for the touch up.

    As hard as all of this was/is, I am super happy with my surgical results. As for the Anastrozole, that is a whole other thing!

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    I had left side DIEP 10.5 years ago, everything still looks great, probably could do another fat transfer but you know it still looks good.

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Avalasana- thanks for sharing your experience. I am so glad that you are happy with your results. I hope to be able to come back in 16 month and say the same.

    Meow13- you give me hope for the future, thank you!

    I was very nervous about the whole procedure, but meeting with my PS, who I trust whole-heartedly, made me feel better.

    ETA: I love the term "puppy wings" Others call them "dog ears" I started calling them "angel wings" thanks to my BS

  • gh11
    gh11 Member Posts: 27
    edited August 2022
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    Hello Meow13, thanks for posting! Can I ask if you had a DIEP flap on only one breast? I had a mastectomy on right breast only and have tissue expanders in right now while I figure out next steps. Fortunately no chemo and radiation needed due to no cancer in lymph nodes and Her2 negative and low oncotype score of 10, but unsure as to a DIEP. Did you also have a lift in the other breast or do you know if it is possible for them to match the diep flap reconstructed breast to the other breast. I am wondering if it is at all possible to leave the left breast completely untouched and still have symmetry? Thanks so much for your help.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    gh11, yes I first had mastectomy simple non skin sparring left in Novem 2011, in April 2012 I had DIEP left side only reconstruction I also had a lift right side. I was and I still am so pleased with the results. My abdominal skin matched perfectly and both sides look pretty much the same. Nice flat stomach too. Even now when I go for mammogram technicians are taken a back that I had mastectomy. I remember one lady asked are you sure you had a mastectomy, LOL I am sure.

  • gh11
    gh11 Member Posts: 27
    edited August 2022
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    So good to hear that - very happy for you that you have a nice flat stomach and feel good about your body. That's wonderful. Did the scars on both boobs match? On your DIEP reconstructed boob, where is the scar? Thanks again. You have no idea how relieved I am to hear your positive story.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    I will pm you a picture gh11

  • gh11
    gh11 Member Posts: 27
    edited August 2022
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    Thank you!!

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    Did you receive message?

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    The scars are what scare me. They healed very nicely after the BMX, the exchange scars not so much, but radiation wiped out the scar on that breast. I feel like I'm starting all over again and adding an additional scar that will be hip to hip.

    Meow - did you have any revisions done after the initial DIEP?

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    No revisions my scar hip to hip isn't bad nice and flat.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    image

    God, I've gained weight in 10 years. Scar is low no one sees it.


    image

    You can see it is white, also have elastic marks from underwear.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022
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    I should said I had some fat transfer from thighs about 4 months after DIEP. I didn't notice much difference