DIEP FLAP

mischa · February 2020

I had mastectomy on my right with nipple/skin sparing 3 weeks ago. Currently with flat expander in pending for first filling. I am working mom with young kid. I am struggling between DIEP flap vs Implant. And need help to find good Dr who are experts in DIEP flap. Anyone has similar situation as me or recommendation on where to find Dr good at DIEP flap?

Thanks

SoItGoes_KV · February 2020

Why DIEP rather than an autologous procedure with less muscle involvement? The concept of muscle weakness in my abs scares me. if you are not familiar with other autologous procedures see articles at Mayo Clinic on breast reconstruction flap procedures. There is also info on this site but I cannot find my bookmark to that article.

I can only offer to share or swap information as I am just starting the reconstruction decision process. My "non-nipple sparing mx on L only" surgery will be in the next few weeks. I do not want implants if I can avoid them. For me having a more complex and difficult recovery upfront far out weighs the chronic maintenance of implants for the rest of my life. I started a thread requesting information on TUG procedure. Hopefully I will get some information soon. This is my preferred next would be SIEA which is DIEP without the muscle involvement. Apologies if I am telling you a lot you already know and have ruled out.

Tomorrow AM I speak with a PS who does autologous. I will be asking him what procedures he does and why. I will report back.

Do you know yet if you will be having radiation? Fingers crossed you are already in the clear.

OCDAmy · February 2020

You might mention where you live to get recommendations. I had DIEP and am very happy with the results. I have no muscle weakness.

TexasMama · February 2020

I'm also very happy with my DIEP and have no muscle weakness. The surgeon didn’t touch my muscles.

JRNJ · February 2020

soltgoes, diep does not involve muscle.

Mischa, you didn’t give much info. If you have enough fat in your stomach and don’t care about having big boobs than i would think long term and get diep so you don’t have to worry about implants for the rest of your life. But I haven’t had it yet. Planning diep in fall.

bella2013 · February 2020

I had BMX with DIEP Flap reconstruction. DIEP does not involve muscles. I am very pleased with my results.

Bella2013

Asianorchid · February 2020

I am living in Dallas area. First (L) mastectomy 8 years ago at MDAnderson, Tram flap reconstruction at the same time after the mastectomy. Second (R) mastectomy Jan 2019, having a tissue expander waiting for a permanent implant. My plastic surgeon said I had no other choice but an implant for the second reconstruction. Recently, I found DIEP flap information and I really want to get it for my second reconstruction. My question is if I am qualified for DIEP flap? If the tissue expended is ok to get DIEP flap?

Could anyone recommend some good surgeon for me, please do. I already had the bad experience with the implant when they tried with a little bag as my ab tissue did not have enough for the reconstruction so I don't want to go back there if I have another choice.

Thanks everyone

mischa · February 2020

Thank you so much for sharing!!

I don’t need radio and chemo.

I m in indianapolis area.

alissat · February 2020

Asianorchid I see Dr. Teotia @ UT Southwestern in Dallas. He will be doing my reconstruction later this year. I really like him a lot. Dr. Teotia or his partner Dr. Haddock would be able to tell you if you’re a candidate for Diep

Yuuki · February 2020

Hi Mischa,

I had silicone implants for 16 years until I had a recurrence and complications from radiation that made me say “enough,” and have the DIEP.

The implants served me pretty well, and I honestly had few complaints. Recovery was pretty fast with a little PT to get my arm moving again. I thought the cosmetic result was good, and wearing a bra was optional (they were small enough and the lack of motion made it feel as if I was wearing a bra). The downside was the lack of natural motion, and the feeling that I had a pillow between my chest and anyone I was hugging, which I never got used to. They didn’t feel like a part of my body, but on balance, no regrets.

I developed severe capsular contracture and axillary cording after radiation for a recurrence, so long story short I had the DIEP. No muscle was taken - something that is supposed to be a given in this procedure, but you should not feel ashamed to ask and yes, taking muscle can give you abdominal weakness. The DIEP breasts feel like a part of my body and they move and feel like real breasts. The downside is extended recovery time, larger scars, and you’re in for two procedures in all likelihood or sometimes more. I have to wear a bra again, but I can’t complain!

If you go with the DIEP, make sure you find the best surgeon you can and make sure you have help especially after the first surgery, which is pretty major. My children are teens and tweens and were able to help out a bit - it would have been harder if they were young.

Best of luck to you.

Yuuki

mischa · February 2020

hi

Here are my thoughts and struggles. Please comment if you are me , what you chose

1) I am struggling among go flat, implant , and DIEP flat ( without muscle involved)

2) currently I only had one side mastectomy and the recurrence of bc on the other side is unknown.

3) if I chose DIEP flap now, my belly fat can barely make one. What if my other side need to be mastectomy?

-fat has to come from back but recovery will be even harder. -I am lean,5’5’’ and 127 lbs.

- I am reluctant to do implant on one side and DIEP on the other

- it does not feel symmetric if I go flat on one side and Keep DIEP side

- also I can not take DIEP out since I had sacrificed my belly for that

5) if I chose implant now , later on when bc recur in my other breast, I can just easily go flat to be symmetric. I am not sure if I really want implant on both side.

Hope my concern make sense to you? appreciate all your sharings.
mischa

NancyHB · February 2020

mischa, I had DIEP three years ago and it feels so natural I honestly forget it’s not real. I have sensory issues and knew I’d never be able to tolerate an implant. DIEP does not involve or remove muscle, and I have no abdominal weakness at all.

Your concerns are well thought out and very valid. It’s impossible to know if you’ll ever have cancer in your other breast in the future; a recurrence at a later date is more likely to be somewhere else in your body (metastasis) rather than a new cancer in the opposite breast (unfortunately). That might be a bridge you cross if and when you get to it. There are other places that can be used to create another breast, should you ever need it - like hips and thighs (SGAP and TUG) - but the hope is you never get to that point. Many of us who have had local recurrences (including myself) found them in the same breast. Mine occurred after a lumpectomy, which then prompted my UMX and DIEP.

Find a good surgeon and talk with them, that can make all the difference in the world. Also - like Yukki above, you can do an implant now and DIEP at a later date, if you choose. If you’re not certain DIEP is the way to go right now, take your time to decide.

Asianorchid · February 2020

Alissat, thanks so much for your information! I will look them up soon

MaryScout · February 2020

I had preventative BMX with DIEP last May. I love it. So natural. I went to the New Orleans Breast Center to do it (I'm in Pennsylvania). The whole process could not have been better.

Feel free to contact me if you want more info.

summergirl1 · February 2020

Hi, I have a question, I was dx in 2011 had right mastectomy followed by a tissue expander, had it replaced with an implant in 2016 which worked well although symmetry was not good, since then I have developed capsular contracture quite bad so was put on waiting list to have it replaced, then I received a recall letter from natrelle regarding recall of the textured implant I have, so finally after a year on waiting list I saw PS yesterday he pretty much refused to replace my implant saying the smooth one won't work and I will get capsular contracture again, so my choices now are diep flap or nothing, he told me it's a huge operation and recovery is pretty hard, I'm just not ready mentally to go with only having one boob but this alternative sounds terrifying, for those who have had the surgery what are your thoughts, would you recommend it and what issues if any did you experience, I'm petrified atm, TIA

NancyHB · February 2020

summergirl I’m so sorry for your experience, it sounds horrible! My experience with DIEP was both good and bad, but it’s a choice I would make all over again if I had to.

One caveat - I don’t have kids or pets at home, and do have a helpful and patient husband, and I think that helped make a difference.

On the good side - recovery is long-ish (8 weeks overall, but I was gardening at 4 weeks) and slow, but manageable; I don’t think recovery was “hard” at all. I had little to no real pain. My drains came out quickly, I had no wound dehiscence, and my scars look great three years later (oh, and my tummy is flat!). My DIEP foob feels and looks incredibly natural, and I’m really glad I made this surgical choice.

On the not-so-good side - the first 5 days are spent in the hospital to watch the flap for failure. My doctor used a Bear Hugger warming blanket for the first 72 hours (warm air to keep blood vessels open and circulating). Absolutely hated that thing. Later, I developed an antibiotic-resistance super bug infection in the flap that landed me in the hospital twice (once for a week in an isolation ward), and home with IV abx for another two weeks. It was a scary time, and it set back my return to work by two weeks, but I muddled through.

Everyone is different; you can read the DIEP threads here and learn a lot about the potential pitfalls, but also the success stories. My suggestion would be to find a local PS who is skilled in DIEP (it’s a specialty) and have a consultation. It’ll give you more information to help your decision.

summergirl1 · February 2020

Thank you for your helpful information, I am going to look into it more and I do know my PS specialises in this so that's a plus, I see there are many pluses to it but it's also scary as it sounds like a big OP, I also don't have a very supportive husband but I'm sure my grown up kids would help me.

bella2013 · February 2020

Summergirl, how old are you? Your age may factor in to your recovery

mischa · February 2020

Thank you all , especially Yuuki, NancyHB and Mary Scout for detailed sharing.

While you were recovering from DIEP surgery, were you taking any medicine for hormone control?

I read watch out for tamoxifen and it says one should stop taking tamoxifen 3 days before immobility event. If recovery will take up to 9 weeks and most of time in that 9 weeks is likely to be more bed time and slow motion, does that set up my body in immobility stage and put high risk of blood clot while taking tamoxifen?

wonder how other handle this conflicts.

Thank you all again!!!

NancyHB · February 2020

I’m sorry I can’t help you mischa - I was TN and so no AIs or Tamoxifen for me

summergirl1 · February 2020

I'm 55 yrs old atm

SoItGoes_KV · February 2020

The free flap can come from buttocks, upper thigh, back, or stomach. I am with you I would avoid the back. Ask your PS if you exhaust your stomach tissue from the first recon can you pull from another area if a second is necessary. My surgeon said the various locations do not change the basic surgery, but there can be a concern about size of the blood supply.

I do not know which I am having until the PS examines me on the 25th.

I am optimistic after reading the responses to your post. Free flap definately reads like the right solution for me. Good luck to you.

SoItGoes_KV · February 2020

MaryScout and others can you say a bit more specifically about your recovery from free flap (DIEP, etc)? I am having the left removed and am right hand dominate. Will I be using my right arm again quickly? What where your limitations? I live alone and am trying to figure out how much help I will need in the 8 weeks or so following the surgery. I do not know yet if the flap will come from my stomach or upper thigh. I want upper thigh if the PS agrees.

OCDAmy · February 2020

I was only in hospital for three days and found recovery from BMX harder than DIEP (I was 55). I have DIEP on one side and implant on the other. I have an excellent PS and he made them both look great.

ijl · February 2020

mischa I am in the situation that you are concerned about. I had DIEP on the left side for DCIS and just Now was diagnosed with Stage 1 on my right one. I am still not sure whether I would go with mastectomy or lumpectomy.

But if I decide to go with mastectomy I would prefer not to have implants. I am very happy with my DIEP reconstruction , it feels so natural that I forget that this is not a an ‘original’ breast.
So farfrom what I read SGAP is the next best choice.

So in your case if needed in the future you will still have options for the second reconstruction

shamajuju · February 2020

mischa - I’m at home right now, recovering from a bilateral DIEP flap. Like OCDAmy, recovery from this surgery has been easier than the BMX.

I would HIGHLY recommend my surgeon, Jason Cacioppo, at Community Health. Not only did he teach several surgeons in Indiana how to do a DIEP flap, he’s kind, responsive, and compassionate. Can’t recommend him enough.

Moderators · February 2020

Dear shamajuju,

Welcome to the BCO community. We are so glad that you reached out to share your story with our members. We wish you a speedy recovery from your surgery and hope that you will stay active here on the boards. Let us know if we can be a help in anyway.

The Mods

perky2020 · February 2020

thank you everyone for sharing your stories. I had reconstruction in 2015 with an implant. I have had a number of issues including capsular contracture on top of radiation for reoccurrence so I am also considering a diep flap. Any recommendations on how to find a qualified surgeon? My onc referred me to one who referred me to his partner as he doesn't do diep flap. She was informative but not sure how to evaluate how good she is. I am in the Seattle area. Thanks again!

perky2020 · February 2020

just found the conversation here on exactly my question in Seattle! Thank you BC.org...such an awesome resource!

Yuuki · February 2020

Hi Mischa,

I am taking Arimidex and Lupron. I was off the Arimidex for around 6 weeks; it was supposed to be shorter, but I developed a clot in the graft (a risk, but by NO means common) and needed flap rescue, so I stayed off of it while I was on blood thinners. The silver lining was that the joint pain went away too, meaning I felt delightfully light on my feet during this period, surgery notwithstanding. Everything is relative.

I would follow the advice of your MO on Tamoxifen. It’s a different drug than the AIs, but I suspect they will take you off it for a while. What I can tell you is you won’t be as sedentary after surgery as you fear. The first few walks after DIEP were difficult until I was able to walk upright, but once you reach that milestone you will be able to get moving regularly. Slow motion is good motion!

Until then, they will keep things under control with DVT cuffs, socks, and medications if you need them. Experienced PTs are very used to managing these risks in their patients, regardless of the type of surgery you choose.

Excellent questions. Hang in there!

Yuuki

ACchaos · April 2020

I am home 3 weeks post DIEP in Sacramento. I concur that recovery from DIEP has been much better than my BMX recovery.

I am 43, had the BMX last August with a total six rounds of chemo, no rads. Chemo ended early because of SE's. I have BRCA1, so rather than the lumpectomy, I went for the full bilateral.

I chose DIEP because at my age I don't want the prospect of additional surgery in the future. Implants, even aside from the capsular contracture potential, will need to replaced down the road. So I decided to deal with the bigger procedure and avoid the future procedures.

As I understand it, general physical health can make a difference in outcome. I was up on my feet the morning after the procedure and out of the hospital two days after.

I have two kids (8, 15) at home and we've been confined per the COVID-19 guidelines pretty much since I got home from surgery. Not optimal for relaxation, but it's been ok. I did spend most of the first week sleeping in our recliner downstairs (purchased for this purpose), followed by a week in a bed that sits a little lower to the ground which made it easier to get in/out. Getting up is still a bit awkward, but it's getting better.

I'm pretty optimistic at this point. The geometry of my body is pretty weird now. I'm sure it'll get better as things adjust. My PS has told me the most common augmentations are to smooth out the ends of the abdominal incision and fat grafting to smooth out breast shape or improve size.

My PS was able to show me a bunch of before/after photos of all my reconstruction options which helped a lot with the decision making process. I did contemplate going flat - it wasn’t as bad as I thought it would be after the BMX. That being said, having some shape was the right choice for me. I’m not as big as I was before, but it’s enough to have the general shape. Hopefully you'll feel well informed when you decide.

Good luck

DIEP FLAP

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