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DIEP FLAP SURGERY AND RECOVERY SUGGESTIONS

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mtks
mtks Member Posts: 61

I will be having DIEP flap surgery in February.

I am 13 years out from ILC/ bilateral masectomy w/ silicone implants. I have struggled with BII for 4-5 years. Exhausting many specialists, knowing it was silicone toxicity I was struggling with the last 2 years, I finally had Explant surgery last October.i was scheduled for explant/ DIEP flap surgery for May 2024. I didn’t want to wait so I asked implants be removed and DIEP flap to be scheduled asap per healing. I am preparing at home for the best possible post op healing. is there a discussion forum here that someone can direct me to? My Plastic Surgeon suggested me to come here. I did find BC.org discussion board to be so helpful during my recovery during my diagnosis 13 years ago. Thankful!anyone have suggestions?

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  • moderators
    moderators Posts: 8,184
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    Hi, and welcome again to the community, @mtks!

    If you go to the Search function and type in "diep" (without the quotes) as your search term, you'll see a list of discussions all about this type of surgery, and can then check out the thread. If you need some guidance, see here our help section on How to use search on the discussion forums.

    There's also an excellent discussion full of helpful tips about surgery from our members: Shopping/packing/to-do list for surgery + recovery

    We hope this helps! Stay in touch with us and let us know how things are going.

    The Mods

  • nns121317
    nns121317 Member Posts: 115
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    I'm having my DIEP done next month as well - surgeries 2/9 and 2/20. I have implants now, and can't wait to be rid of them. How do you feel since you explanted?

  • abigailj
    abigailj Member Posts: 101
    edited January 15
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    @mtks The thread “seeking DIEP recovery stories” has a lot of good info. Best wishes for a good outcome!

  • mtks
    mtks Member Posts: 61
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    My explant removal was suppose to be an outpatient procedure but I ended up staying overnight then home in the morning. Within DAYS I felt better. As each day passed I was sure I made the right decision and so grateful! No lymph pain in chest, armpits, collarbone and neck. No headaches! Headaches that would come and go. They would last 20 to 40 minutes and then dissipate. Some headaches were excruciating. I saw growth with a week with my nails! And my hair started feeling thicker in several weeks. I did not feel the extreme fatigue that I had for so long. I have more energy. My muscle and joint pain are gone. I’m not sure about my auto antibody blood work. My ANA, DNA and CCP all were high, but clinically showed no signs. Rheumatologist agree with me along the lines of breast, implant illness/silicone, toxicity, and agreed with my decision in having breast implants removed.My sleep is so much better. Digestive issues are gone. No shortness of breath. I feel like I can think more clear. I am able to lose some weight with less retaining fluid. No more bloating! Like I said- so grateful that I have the implants out and feel GOOD!! Thanks for the directions to  “seeking DIEP recovery stories” I will try to navigate there.

  • creativezoo
    creativezoo Member Posts: 31
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    I am POD# 7 from prophylactic right mastectomy and bilateral DIEP flap reconstruction. I was freakishly unprepared. I think I was trying to pretend I could have a normal life again after 9 months of being on leave and doing chemo, etc. When I got my surgery date for this, I wasn’t in the same frame of mind in regards to preparing and researching as I had when I was initially diagnosed and getting the first mastectomy. So I’m finding that I am frustrated and angry with myself for being so casual about such a big surgery. I spent the week in the hospital going from one panic attack to another causing me to struggle to get pain under control. Ugh- so at this point I’m trying to problem solve silly things like the general discomfort of living in a chair. In the beach chair position, my back will start hurting so I lean back a bit to sleep and my butt will eventually hurt. So I sit up so my butt doesn’t hurt and my back starts to hurt. Any suggestions? I didn’t have but a cheap manual recliner that I can’t really recline in. But it has a nice posture and sits high enough that it’s easy to get in and out of. That’s where I’ve been since I got home. Not quite ready to traverse the stairs to my bed which itself is high set so will need a step stool to get into the “log roll” position. Any advice on this and whatever would be appreciated!

  • moderators
    moderators Posts: 8,184
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    It's not uncommon for folks to envision returning to normal life X amount of time after going through treatment. I think in a certain sense what gives one hope or the energy to get through it is sometimes by having that mentality of "well if I should push through this, then I can look forward to a return to pre-diagnosis normality." Going through active treatment, and especially surgery definitely impact you not only physically, but emotionally. It's rough. I'm sorry for all of the pain and discomfort you are going through, @creativezoo. I hope you aren't too hard on yourself though. It's hard to prepare oneself for this. We do hold free weekly meet-ups over Zoom if you wanted to vent or find others that can understand your experience. Like the discussion boards, it's a great source of support, and oftentimes members will give suggestions/tips on how they managed certain side effects. But we also discuss the emotional impact of diagnosis and going through active treatment can have, and finding ways to adjust to a "new normal." If you're interested, you can come as frequently or as infrequently as you'd like. We have the date/time and registration information available here:

    You would be looking at the In Treatment groups if you are still going to have radiation or chemo, otherwise the Bonded by Breast Cancer groups are where we focus more on the emotional processing post-active treatment phase.

    I hope this is helpful! Keep us up-to-date on the progress on your recovery! ❤️

  • creativezoo
    creativezoo Member Posts: 31
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    @moderators if i go to the meetups/groups, do I have to participate or be on camera each time? Can I go and just listen?

  • moderators
    moderators Posts: 8,184
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    Hi @creativezoo, you can come and listen for sure. Of course we find the most supportive groups though are when people share a bit either about themselves or provide encouragement to others.

  • creativezoo
    creativezoo Member Posts: 31
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    @moderators ok thanks. It takes me a bit to warm into things so that is helpful. I appreciate your response and Happy Valentines Day!

  • moderators
    moderators Posts: 8,184
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    Completely understandable, @creativezoo!

  • jonib
    jonib Member Posts: 94
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    Having single mastectomy and Diep flap next week and now second guessing all my decisions. Worried about the aesthetics as I am confident on the mastectomy.

  • nns121317
    nns121317 Member Posts: 115
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    Everyone who had a DIEP in February - how are you doing?

    I had my two-week post op today. Had my drains and wound vac removed. I have a small spot on my abdominal incision that didn't heal, had some fibrous tissue in the way. I get to pack that for a couple weeks, let it heal from the inside out.

    I had an area on my left breast (which was radiated) where the outer layers of skin blistered, then died after surgery. It was just pulled too tight. Today the doctor cut off the black/dead/scabbed skin to create a fresh wound and promote healing. It will likely take a few weeks to regenerate healthy tissue, and in the meantime I'll dress it twice a day. The area is not small, maybe 4" x 3", and I'm hopeful nothing gets infected.

    Initially I had told my employer I expected to be back on March 18th, and that's pretty laughable at this point. The new target date is mid-April, so I have time to make sure everything's healed and restart my other meds (Tamoxifen and Ibrance are being held for now). I've also lost almost 20 pounds since my DIEP - I definitely feel like my insides were rearranged, and I eat much smaller portions now.

    Hope everyone is doing well!

  • jonib
    jonib Member Posts: 94
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    I am now two and a half weeks post DIEP flap. The surgery really took a toll on me. I know it is hard surgery, just thought I would handle the pain better. I had to be wheeled back into the operating room twice as the flap got blood clots. Luckily I did not lose the flap. Was in ICU for three days and then back home. I am hoping to have the drains removed on Friday. So far my new foob is still purple and green - it's really been through a lot - and does not look like my native breast at all.

  • nns121317
    nns121317 Member Posts: 115
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    Hey jonib,

    I'm glad they were able to preserve the flap, but that sounds like a lot! I have a wound that won't close across the bottom of my radiated breast, and I'm scheduled for surgery next Monday for a split-thickness skin graft. Considering I thought I'd be going back to work next Monday, it's quite the setback and I'm a little disappointed, but we'll do what it takes to get a good result. Hang in there!

  • creativezoo
    creativezoo Member Posts: 31
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    @nns121317 I can wholeheartedly agree with you regarding the idea of what you thought the return to work date would be-versus what it actually will be. I told my job that I bet I could get back this coming Monday but in real life it will be the 1st. So I have to be content with working on my physical therapy so that I am strong enough to even do the work. @jonib I too struggled with pain control for much of the recovery process. I had to be on oxycodone longer than is usual even for me. But I did turn a corner and suddenly things got easier-so there ls light at the end of the tunnel. It was literally from one day to the next sort of thing. Now I’m doing PT and I’ve never been so excited to do it. Just a few days in, I felt like I can do life again. At my recheck yesterday, lifting restrictions were removed, I don’t have to wear the abdominal band anymore and I can start scar work. There is still an area on one of my foobs that the incision line is still scabbed and requires ointment and dressing (btw I found out that I am part of the 1/3 of the population that is allergic to neosporin!) but I can work on the other foob and waistline scars. Heads up-when you stop wearing the abdomen support, that scar line will swell and get uncomfortable so they said to wear leggings to give light support and it did help.

  • mtks
    mtks Member Posts: 61
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    I am 4 weeks out from my DIEP flap. I was wondering if anyone had the same out come as me.?It looks as though my flap reconstructed the lower half of my breast only. I haven’t seen my PS yet to visit the revision stage. Feeling concerned. Anyone?

  • creativezoo
    creativezoo Member Posts: 31
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    @mtks Could you elaborate a little more? Did you have immediate reconstruction or do you have paddles? I have one breast that need a paddle and one that didn’t….I will say for me (about 6 weeks out) I find myself toggling from thinking I’m going to need all sorts of revisions one day, to being surprised how it all looks another day. As the scars heal and progress, the shape keeps changing. I do think there will be some revisions needed as I have this hard area near my collar bone that protrudes. I see my surgeon in a month or so and at that time we will discuss the outcome and further needs. I assume they want to see you fairly well healed before making those types of decisions.

  • nns121317
    nns121317 Member Posts: 115
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    I have areola paddles (BMX was skin sparing, not nipple-sparing). I'm five weeks post-op, and my right side (not radiated) has definitely "sunk" into a very natural breast shape with not much projection up top. On my left side, which was radiated, the skin at the bottom of my breast necrotized after the DIEP, so it was a huge wound. We tried debriding it for a couple weeks, but just didn't make any progress, so last Monday I went back into surgery for a skin graft from my thigh. I have a wound vac on it, so haven't seen how the grafted skin looks yet. However, while in surgery it came to light that roughly half my left flap had also died, so that was removed too. Even with the wound vac, I can see that my left breast is only about half the size of my right, plus it sits a lot higher because of the radiation...so I will be very interested to see what the PS suggests to resolve things. In a perfect world, they would tighten up the right one to try and match the left, so we don't have to mess with the radiated side anymore...but this is the first time in all of this that I've actually felt a little disfigured. The difference is quite noticeable, even under layers of clothing, so it's making me self-conscious. I try to laugh it off, even commented that I could win first and third in a wet t-shirt contest, but truth is I'm hoping to get it fixed ASAP.

  • jonib
    jonib Member Posts: 94
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    @nns121317 I understand your concern. I had a unilateral mastectomy and DIEP and am concerned about my DIEP breast. I don't think it will ever take on a normal shape. So many pictures I see on Facebook groups show DIEP breasts looking good a few days after surgery. Mine is still beat up looking and does not match my good natural breast. Please keep us updated on your status. I would love to know what your PS recommends. Also how is the wound vac? I had an incision that wasn't healing and I was nervous about getting a wound vac but that is what I should have done.

  • nns121317
    nns121317 Member Posts: 115
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    @jonib wound vacs are a hassle, but they seem to serve their purpose well. I had one across my abdomen for two weeks after my DIEP, and when I got it off most of the incision had already healed, which was cool. I'll get this one off on Tuesday, and see how it treated my skin graft. The biggest problem is that you can't get the dressing wet, and it can be awkward to cover certain spots for showers. However, I really enjoy the hands-off nature (no wound care), and just wear sweatshirts with inside pockets to carry the wound vac around.

  • mtks
    mtks Member Posts: 61
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    Hi, o am so embarrassed but what is a “ paddle?”

    I had my explant, then 4 months later DIEP flap. I was expecting a breasts mound but my breasts looks more like constructed the lower half of breasts. One breast is smaller than the other also. I am holding my emotions back and trusting when I see my ps next he will give me positive insight of revision will do. I had breast implants for 13 years. Whenever I looked in the mirror, they reminded me of breast cancer. Not pretty at all. Still glad and hopeful for using my own tissue. Glad to be able to come here and share and learn.

  • jonib
    jonib Member Posts: 94
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    Hi @mtks. I had my Diep flap on 2/27 and I am also hoping that my plastic surgeon will be able to make my foob look better when I do phase 2. Right now I am dealing with post surgery open wounds so who knows when I can do phase 2.

  • mtks
    mtks Member Posts: 61
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    hi jonib Hope you are healing well. Have you scheduled your revision yet? Just curious what that entails. I see my surgeon tomorrow. Very excited, but at the same time nervous. Hope he can lift, fill and address symmetry.
    Hope all is well with you!

  • creativezoo
    creativezoo Member Posts: 31
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    @mtks dont be embarrassed- a paddle is where they take skin from somewhere else to fill a gap where they’re isn’t enough skin to close the space. So even with my relatively small cup size, my original mastectomy site healed in such a way that the extra skin left didn’t close the “gap” so they had to use skin from my abdomen to fill the space. So not just the fat but the skin is also used - there’s an area where the skin color isn’t going to be quite right and instead of one simple line scar, I have what looks like a “cat eye” that is sideways if that makes any sense. Anyhow, did you find your visit with PS helpful? Are there options for you? I am a couple weeks away from the visit with mine where we can discuss needs for revisions. The area is still protruding and still uncomfortable and sore. I tried massage techniques to soften the edges so that it’s not so firm and sore but ended up making myself dizzy and nauseous so my PT suggested not doing that anymore. They’re just as confused with how that had healed…I can only assume I’m having a reaction to the sutures or something like that…laying down excessive scar tissue and walling off the area….🙄

  • jonib
    jonib Member Posts: 94
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    @mtks hi. I'm sorry I never saw your 4/10 post until now and hope you are doing well. I have seen my PS but have not scheduled a revision yet because I am still coping with two open wounds (one near my belly button and one on top of my breast) and continued swelling. I have been using bacitracin and gauze after showering for the wounds. I tried Medihoney but that did not seem to work any better. My next appointment is the end of May. When discussing my revision, he said he will make my breast more rounded and will discuss the revision after I heal. I also mentioned my dog ears and he said that was an easy fix that takes around 7 minutes (lipo).

    What has your PS told you? Do you have a date and what changes are planned?