Please tell me about life after DIEP...

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Hammie28
Hammie28 Member Posts: 63
edited September 2018 in Breast Reconstruction

I am currently going without reconstruction to allow time for my skin to heal from radiation, but will be having DIEP surgery in the next few months. I've been thinking a lot about the surgery. Right now, I have a daily reminder of my cancer... I think about it every time I get dressed or tug on these uncomfortable mastectomy bras. And I spend most days with a piece of silicone strapped to my chest. I have pretty high expectations that I'll feel and look "normal" again once I have a new breast. But lately I've been realizing that perhaps that it is a bit unrealistic. Would you please tell me how your feel about your DIEP reconstruction? What does the new breast feel like? Are you happy with the way it looks? I'm sort of afraid of feeling like I have a giant hunk of fat hanging on my chest!

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  • nihahi
    nihahi Member Posts: 3,841
    edited September 2016

    I have experience with no reconstruction......implant........and finally Tram free (which is basically Diep....and many who say they had a Diep, are in fact, Tram free recons).

    The flap recon is far away, in my opinion, the best option for a natural looking and feeling breast replacement.

    You will find your best source of information and support on the active Diep thread. Feel free to post your questions there.

  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited September 2016

    I had DIEP on 3/1/16. I love my new breasts! They are larger and shaped better than my originals. There is scarring, but it is already starting to fade. My breasts feel totally natural. I thought I would not have any feeling in them, but I do. And you get a little tummy tuck on top of all that!

  • LAstar
    LAstar Member Posts: 1,574
    edited September 2016

    I'll be honest, at first it felt like I did indeed have "giant hunk(s) of fat hanging on my chest." It took a while for them to integrate and feel natural. Maybe some of that was psychological? There is numbness in the chest and belly that feels strange. Now they look great, the scarring has faded a lot, and the zings and twinges of nerve regeneration have stopped. It's a long recovery, but you end up with warm, soft, natural-looking breasts. I can rock a backless dress or a low-cut dress, and I wear only the lightest of support bras, if any. Silver linings where we can find them, right?

  • Hammie28
    Hammie28 Member Posts: 63
    edited September 2016

    Thanks for your responses. I started a new thread because it seems that the DIEP thread was for those who are currently going through the process. I was hoping to hear from someone who might be a bit further out from surgery. But I'll be glad to post there as well.

    lady: your DIEP was the same day as my mastectomy!

  • Hammie28
    Hammie28 Member Posts: 63
    edited September 2016

    LA: I'm assuming that your belly skin now becomes your breast skin? That is hard for me to wrap my mind around. I think it will be odd to see pregnancy stretch marks from my belly now on a breast.

    I'm asking these questions to try to have realistic expectations. As I am living without a breast right now, I feel like I may be expecting too much and should be preparing myself that it will not be like having my natural breast back again.

  • LAstar
    LAstar Member Posts: 1,574
    edited September 2016

    I had skin-sparing MX so we did not need to use belly skin. My flap breasts feel basically like regular breasts. There's numbness but that's not a big deal, and you are already experiencing this after MX. I know a lot of women struggle with the loss of nipple sensitivity during sex, but that's not an issue for me. Have you seen reconstruction photos for your PS? My only concern would be that you are satisfied with the work of your PS. I live in a small town and our PS are awful, so I went to New Orleans and Charleston for my surgeries. My DIEP was done by Dr. Marga Massey and she did such a great job that I never went back for Stage 2.

  • dismay15
    dismay15 Member Posts: 343
    edited September 2016

    I had bmx and DIEP over a year ago and I agree with LAstar on numbness, sensitivity and recovery. You loose some sensation, but It's no big deal and it's totally worth it. I also had a great PS and never went back for stage 2 - didn't need to. The most important thing in my opinion is to make sure you trust the PS and they have a proven track record of success.

  • debiann
    debiann Member Posts: 1,200
    edited September 2016

    I am two years post DIEP. I had the bmx and recon at the same time, plus two revisions to get the shape & size right. Yes your belly skin becomes a football or round shaped plug of skin in the center, but that gets reduced with the revisions and later becomes the nipple area so your former stretch marks aren't obvious.

    I'm very happy with the appearance. I have more sensation in the breast skin than I expected. I was not prepared for the numb belly, which I dislike very much.

    Also, I only had two nodes removed yet I have lymphedema. I experienced periods of swelling in my breast and stomach since surgery, but the PS and BS kept saying it was "normal healing". It got much worse this summer and did not feel normal at all. Neither surgeon would take my complaints seriously. I saw my GP who took some measurements and dx Lymphedema and ordered PT. I'm doing much better now.

    While it's possible I would have developed LE with just the mx, the reconstruction and tummy tuck didn't help. The pt said any surgery can cause LE by disrupting pathways. When it's bad my stomach and chest swell. It feels like someone unscrewed by booby and screwed it back on too tight.

    I'm about 75% happy with my recon.

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2016

    What is stage 2 of DIEP please?

  • debiann
    debiann Member Posts: 1,200
    edited September 2016

    In stage 1 the main objective is to get living tissue to the area. The shape and size is not as much a concern. In stage two they lift, reduce, shape, remove any areas of necrosis, whatever needs to be done to make them pretty. Also, dogears at the ends of the incisions on the breast or hip can be fixed. I had an additional revision because after stage 2 my lefty was much bigger than righty.

  • nihahi
    nihahi Member Posts: 3,841
    edited September 2016

    Hammie...as you can see in my "history", I was a looooooong time out from my initial mx to my final flap recon, which is now 3 years in the past. I spent a lot of time on the 2013 thread and heard lots of feedback from women having recon at different stages of their tx. It seemed to me, that the immediate recon gals often had a more difficult emotional adjustment, since they went into surgery with "natural breasts" and woke up with "flap recon breasts". The fact that you are now "flat" might just make the transition easier for you....it did for me! The moment I woke up from the flap surgery, I knew it was a much better alternative than the implant....it just felt like me...not something artificial. I never once had the mental image of "hunk of tummy hanging off my chest".

    You definitely want to go with a PS with lots of experience in doing microsurgery, because the venous/arterial connection is vital for successful outcome. You also need a surgeon you are comfortable with, and one who listens to you and your concerns.

  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited October 2016

    Just finished stage 1 of Diep. If the goal in stage 2 is to make the breast smaller, how is that done? Thank you!

    Ellen

  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    My stage 2 was a lift and reduction. The incision went around the plug of skin in the middle. This plug was greatly reduced in size. Then there was an upside down T shaped incision on the lower side of the breast and along the crease under the breast. I think it's similar procedure to what a normal reduction is.

  • Hammie28
    Hammie28 Member Posts: 63
    edited October 2016

    It seems that sometimes an implant or TE is part of the DIEP process. Is this correct? I am hoping to avoid having an implant.

  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    I think they only use an implant if you don't have enough tissue. If you are happy with the size you've achieved then there should not be a need for an implant.


  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 1,585
    edited October 2016

    Debiann, how long did you have to wait for 2nd stage?

  • carol57
    carol57 Member Posts: 3,567
    edited October 2016

    Hammie, here's my diep experience:

    I am five + years out from my diep (bilateral) and I am very happy with the outcome. My mx was skin-sparing, so I don't have the football-stitching scar lines that come when the tummy skin is used to form the breast shape. My nipples were formed surgically, followed by tattoos for color. Overall, the aesthetics are pretty good, with some scarring where my skin was scraped a bit too aggressively during the mx, and the skin died and was replaced by scar tissue.

    The breasts move with me and are warm like natural breasts. They are much like a young woman's firm breasts--no sagging at all, like the ones I said goodbye to in the operating room! I'm 62 now, and I rarely wear a bra, because there's no need. I will say that the band of a bra does slightly irritate the underside of my breasts, where I have incision lines from the recon and where the natural ennervation was not disturbed. I find this feeling to be similar to the incision-area tenderness I have experienced long after other surgeries.

    Lately, I'm starting to get some feeling in areas that were numb for the first five years or so. The area of tummy numbness is now minimal, and my breasts are starting to feel heavy--I can sense that I actually HAVE them, from feeling their weight on my chest, which I interpret to mean that ever so slowly, some nerve or sensory connections have been re-developing. I still cannot feel any touch on the skin of either breast (which does not bother me).

    I have very mild lymphedema in one arm and armpit, stemming from removal of five lymph nodes on that side. I do find that in very hot weather, especially when I'm physically very active, my midriff tends to swell slightly on that same side. I suspect that the liposuction I had to harvest fat for the stage-two fat transfer disturbed my lymphatic capillaries just enough to make the area susceptible to minor swelling. To debiann's point, it's hard for me to imagine that these pretty-invasive flap recons don't increase lymphedema risk, and I know that Dr. Massey and some of her colleagues go to some great lengths during and after surgery to try to minimize that risk. That said, I believe the research suggests that BC patients who have delayed recon (of all types) tend to have reduced LE incidence compared to mx patients who choose no recon, because scar tissue from the mx is cleaned up, presumably opening some lymphatic pathways that encountered scar-tissue roadblocks.

    I hope this helps in your deliberations about reconstruction.

  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    Lovemyfamily,

    I waited longer than necessary for my stage 2 because I am a teacher and I waited till my summer break. I waited even longer for the last surgery, the nips/areolas, because I was just so darned tired of surgery. Now I'm so happy it is finally finished!

    My lymphadema in my left breast and arm and I only had 2 lymph nodes removed. I'm seeing a PT who has been very helpful. She says any surgery can change the flow of lymph drainage and can cause this problem, even with no nodes removed. She is seeing a man who has lymphadema following rotor cuff tear surgery. I get some swelling in the belly too when its hot. I keep my surgery binder handy, if I feel like I'm staring to swell I put it on. I will be getting an arm sleeve too.

    I was just dx with venous insufficiency, which is a problem with the veins in the legs. Unrelated to the surgery. The treatment is to wear compression socks. I think I just need a compression body suit!.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2016

    Well it won't feel like before but much better than no reconstruction. I like the results the warmth and swishiness is there. Not all feeling is there. I have tighness around scar on abdemon. I can do treadmill and swim no problem

  • Hammie28
    Hammie28 Member Posts: 63
    edited October 2016

    I appreciate the responses! It looks like my surgery will be in February. I don't find many women who didn't have immediate reconstruction so it is difficult to compare experiences and expectations. I'm not quite ready to join any of the threads for folks who are going through surgeries right now... the details are a bit much for me to handle at this stage. I'm more interested in setting realistic expectations for myself for after the process is complete so that I'm not disappointed. Thank you again everyone!

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2016

    I had to wait about 5months after bmx to get the DIEP because of doctor schule.

  • NancyD
    NancyD Member Posts: 3,562
    edited October 2016

    I had my delayed bilateral DIEP almost seven years ago. My experience is much like Carol57's except I had the complete breast mound replaced with belly skin and fat. My scars follow what would be considered a "sweet-heart" neckline. There is pigmentation difference as the skin from my belly was never exposed to sun, but that would likely be true about my breasts, too, just not as sharp a demarcation. I was never a sunworshipper (freckling redhead), so overall, the effect is more natural than not.

    Sensation has returned in small areas of my stomach (was completely gone through the central area from belly scar up to breasts). Some sensation has started to creep in around the edges of my breasts. I think this is what I miss the most—the sense of touch on my breasts.

    My breasts' shape are both very natural, and they feel warm and squishy. I had CV nipples created, but have not had areolas permanently tattooed. If I feel like "dresssing up", I use temporary tattoos.

    I guess the best compliment about them is that my OB/GYN always says how good they look. I like not having to worry about a form slipping out, or having to get a new one every few years, or worrying if an implant will rupture or need replacing. They are all me, just taken from another part of my body.

    An aside story: One of my sisters married a plastic surgeon. I remember having a conversation with him about the possibility of taking the fat from my thighs or butt and injecting it to make my breasts larger. This was circa 1980, long before my bc. They were on the cusp of trying this but it was still pretty much fantasy. Fast forward 35+ years and now it is common place.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2016

    I also had the 2nd part of surgery taking fat from my thighs to enhance my diep. I really didn't notice too much of a change. My diep was done in 2012 it probably could stand another fat transfer touch up.

  • Hammie28
    Hammie28 Member Posts: 63
    edited November 2016

    Thank you Nancy! Your surgery sounds like what I can expect. I'm really afraid of looking like frankenstein from the crazy scars. But anything has got to be better than the prosthesis. I also just feel really weird thinking about my belly skin being a breast. I know this seems crazy... but if I can see some identifying belly skin marker (scar from the oophorectomy or stretch mark from pregnancy) I think I'll be completely grossed out. I see these really awesome pictures of what DIEP reconstruction looks like, but I'm not sure I'm comparing apples to apples since some may have been skin sparing. Plus... what happens to my radiated skin that is my chest wall currently?

  • NancyD
    NancyD Member Posts: 3,562
    edited November 2016

    Hammie, if you have enough belly fat and skin, and your radiated area is not up to par, your surgeon might chose to build the entire mound as mine did. I had significant hardened fat on my cancer side that had to be removed during the DIEP surgery. My surgeon used the term "carved away." I think it was cooked by the radiation. Anyway, once that was removed it was clear to him that the skin would have to go, too. So much for the skin-sparing mastectomies I had.

    I also had a small scar on my lower belly from an ovary removal 15 years before. Luckily, it was so low that it didn't come near the area removed to make my new breasts. But I know what you mean about seeing the topography of your belly on your chest. Stretch marks from pregnancies and a couple of moles made the move upward, lol

  • marytn
    marytn Member Posts: 7
    edited November 2016

    Had my left DIEP recon in July 2014, one week after mastectomy Before deciding on recon I seriously considered "going flat" Just can't tell you how glad I am now to have had the recon My PS did an unbelievable job--somehow perfectly matched my other breast in one surgery I never had the nipple recon; may one of these days I'll get to Baltimore for tattoo nipple--but for now I am very very satisfied with result

    ----all that being said, it is one heck of a big surgery and immed post-op I was shocked at the huge scars The hip- to- hip incision is really something---after 2 yrs it's faded signigicantly but still pretty impressive (not in a good way!) Doesn't' bother me much, but I've never been very vain--I would understand if some women were unhappy with that part of the result The breast scar has faded completely in places. Overall, the breast feels natural, looks great and I can go days without thinking about losing my breast to cancer!!

  • Mombytheriver
    Mombytheriver Member Posts: 25
    edited November 2016

    I had my DIEP/TRAM Flap surgery on 9/27/2016 - 7 weeks ago. When I woke up from the BMX, I was surprised to look down and see the same skin around my new breasts that I had seen all of my life. They did a lollipop incision to conduct the BMX and then the flap was placed and the original skin (minus nipple) was wrapped around the flap. The circle of skin in the middle is the only part of the stomach skin that is visible, and it will look much different after the stage 2 and tattoos in January and March. The recovery is longer, and I have never been so tired. However, even at 7 weeks, I can say that the pain was manageable and my breasts look very natural. Last night I realized that my right breast is soft and squishy and looks and feels like a real breast. My left breast is still a bit hard and will be fixed during stage 2. I am very happy with the decision to have this surgery. Choose a plastic surgeon with a lot of experience as this is a surgery that requires skill and experience. Best of luck to you.

  • chicklet
    chicklet Member Posts: 5
    edited September 2018

    I just read these questions and can answer some  of them through my 2.5 years since my surgery- mastectomy both breasts using deip flap A lot of the info on this surgery 2.5 years ago were from people either right after the surgery or maybe a few months later .I did not have any info giving me what it would be like 2 years and beyond ...Your weight will shift to your upper body. You will possibly look boxy up top. If you have broad shoulders /chest to begin with it will accentuate that look. Your stomach above your flap will puff out if you do not keep calories low. Your stomach area is literally  moved up from its normal position so the shift will be there. If I gain a few pounds it goes straight to my stomach area and the breasts. 

    Very hard find pants that fit properly. Your breasts will get bigger if you are prone to gain weight  pads  Very uncomfortable. I am 2.5 years out from my surgery and if I can help some one else I would have gone flat. I have not had a decent night sleep without sleeping pills. No full eight hours of straight sleep for sure. If you change positions at night which happens it will be hard to get in a comfortable position to get back to sleep unless you are a back sleeper I suppose which I am not.  I AM VERY EXHAUSTED. When you do not sleep well your hormones shift and wrecks havoc on your body. I have hard scar tissue throughout my breasts which is truly uncomfortable. My quality of life is NOT what I was expecting from this procedure. I wish I had this info when I was going decide what the next step would be .The decision you make is needed so quickly after the diagnosis you don't have time to process through all the facts and realities of it all. I searched for info back in 2015 when I was diagnosed and their wasn't any information about the quality of life and complications years beyond the surgery.  I understand everybody is different ,but if you choose buyer beware.  I am 2.5 years out from my and if I can help some one else I would have gone flat-not worth the quality of life to look like you have real breasts. They are not and never will be. They are just fat blobs on your chest. The tummy surgery may suck you in but so not worth it!

  • Lula73
    Lula73 Member Posts: 1,824
    edited September 2018

    I’m 18 months out from mx & DIEP. Your breasts will gain and lose weight the same way your tummy did - the tissue has a memory. So if your tummy was the 1st place to gain/lose your breasts will now be the first place to gain/lose. Likewise if your tummy was the last place to gain/lose your breasts will now be the last place you gain/lose. A lot of issues like the boxy look, bloating in the upper abdomen, etc are resolved in stage 2 if you’ve chosen a PS who fully addresses the changes to your lower 1/2. With that comes pants fitting properly again. Choose your PS wisely based on his/her outcomes and what all he/she offers, not by whoever is closest or in network. I am thrilled with my results, can do everything I did before, look great in a skimpy bikini and would do it again in a heartbeat if I had to do it over. I went to NOLA for mine.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2018

    I had my left side DIEP in 2012, fabulous results.

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