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Topic: Seeking DIEP recovery stories

Forum: Breast Reconstruction —

If you've had or will be having a mastectomy (or in some cases, lumpectomy), you're likely facing decisions about whether or not to have breast reconstruction, and if so, what type and when. Deciding whether or not to have a breast reconstructed is a very personal choice. Take the time you need to learn about how breast reconstruction might affect you, both emotionally and physically, before you decide to have the surgery.

Learn about different surgical options and the medical and personal issues around breast reconstruction.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Dec 11, 2020 09:50PM

sharon0706 wrote:

I had a bilateral mastectomy with tissue expanders and am now trying to decide between implants and DIEP reconstruction.

If you have had DIEP reconstruction, here's what I'm curious about:

- How did you make your decision?

- What was recovery was like?

- How long ago was your surgery and how you feel about the outcome?

Thanks,

Sharon
Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Posts 61 - 64 (64 total)

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Feb 20, 2021 10:55AM - edited Feb 21, 2021 08:32AM by abigailj

edited to fix a few typos

Hi Everyone!

Some details on my experiences in response to recent conversations regarding outcome, revision, etc.

  • Although I did have an out-patient surgery at 2 or 2 1/2 weeks after my initial skin/nipple sparing BMX with immediate DIEP recon (my surgery was 23 June 2020), that was to remove the 'insurance' flap of belly skin they put underneath my reconstructed breasts in case my breast skin and nipples did not survive - that way they would still have enough of my skin to cover the transferred belly fat/ blood vessels/nerves. Thankfully everything survived.
  • Well, more or less survived - as I mentioned in the past I did have some wound healing issues. One of these was an infection in one reconstructed breast and in conjunction with that there was some fat necrosis - approximately one big tablespoon's worth came out through the infection opening which was at bottom of breast (hope I am not grossing anyone out) - it didn't hurt or anything since that was maybe a month at most after the initial surgery, nerves hadn't started regenerating there yet, BUT it did leave a divot in addition to leaving that right breast a little smaller in general as a result. So, I will have fat grafting to smooth that out. I do not think I need it for anything else, I'm not going for perfection here and I'm otherwise very happy with how I look now. The recon breasts are a little smaller (D vs. DD before) the nipple on the right breast is a little lower, but that should perk up to the same height as the left once the missing fat is replaced.
  • I also needed a second out-patient surgery about 6 weeks after the initial one due to wound healing issue with the bikini-line incision - you would not believe how awful and huge it looked at that time (I documented my recovery with pictures, I am willing to share my pix privately but mods don't want us to post pix on the threads so PM me if you want to see anything). It took a while for that incision to heal but now I just have the 'normal' type of post-DIEP scar now that I am 8 months post-surgery and as I mentioned I have been working with a wonderful PT and using massage myself too so it is not raised much at all anymore for most of the length.
  • My PS did not want to talk about revision until I was fully healed, which I would say took me a good 4, even 5 months, and even after that, the appearance of my breasts has continued to improve as I have been using massage on them too - the scars underneath are soft, less visible, the feel/softness and weight of them overall, the way they shift around when I go without a bra, etc. all feels really natural and good. So for me, I really don't want anything aside from that fat graft (my insurance covers any and all such post-mastectomy recon procedures) at this point. Based on my experience, I would be cautious about any PS willing to do recon very quickly after the initial surgery - as I have detailed, things continued to change for the better for me for quite a while.
  • Insurance in the US - the Women's Health and Cancer Rights Act mandates insurance cover post-mastectomy recon but do not know if fat grafting is always mandated to be covered even though it is implied by the 2nd bullet. There is probably more info on this site about that somewhere, but here's what I found on the American Cancer Society website:

Under the WHCRA, mastectomy benefits must cover:

    • Reconstruction of the breast that was removed by mastectomy
    • Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy
    • Any external breast prostheses (breast forms that fit into your bra) that are needed before or during the reconstruction
    • Any physical complications at all stages of mastectomy, including lymphedema (fluid build-up in the arm and chest on the side of the surgery)

Wishing everyone the best!

Abigail

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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Feb 22, 2021 07:55PM JRNJ wrote:

Whatjusthappened, Thanks about telling me about the facebook page. I joined. I posted my picture and some people said they have never seen pictures that bad posted on the site. So that really sent me over the edge. But others provided support and that really helped.

The good news is I am healing well, no infections, open wounds, etc. I'm feeling ok, sore and tired alot, but I am cooking and cleaning. I see on the site what you said that many have their flaps closed in phase 2. But my Dr. has never said anything like that would happen. Also many have circles and vertical incisions, instead of large horizontal (uneven) incisions. I assume that is my BS fault who I did dump, and also because I was supposed to have implants. I'm trying to be patient and give it time, but is is obvious all the time will not make them look the same, they are very different. Maybe I'm being too hard on him. The right one had an infection and radiation, so he had to cut out some bad skin, making the incision much higher than on the left side. And I didn't give them a huge amount to work with. But the two Drs. clearly have different styles, and I got the impression they had never worked together before.

Indahood, I can't believe you went skiing and biking!!! I went food shopping yesterday and it totally wiped me out. I couldn't get out of bed today til like 2.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/3/2020 Aromasin (exemestane) Hormonal Therapy 8/5/2020 Arimidex (anastrozole) Surgery 8/24/2020 Prophylactic ovary removal
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Feb 23, 2021 12:36AM Whatjusthappened wrote:

JRNJ, the best cosmetic outcomes for DIEP are from those who do MX/DIEP in one surgery. When I went in for my consultation my PS said that delayed DIEP on radiated skin is the most complicated case, and that you'll not see these kinds of cases on the PS website galleries. So my expectations weren't that high going in. I imagine if you add in your failed TE's, that your case was pretty darn complicated. The surgery is so delicate that they really don't want to mess with the tissue any more than absolutely necessary, so I'm sure that there are things that can be done to improve the outcome after you're healed up.

I guess whether or not those horizontal incisions can be fixed depends on how much tissue you have to work with. I would start writing down some questions for your PS and maybe even share some pictures of what you would like to achieve. I don't feel like my PS really sat down and actually listened to what I wanted before my Phase 2, and I wished I had expressed myself better. I'm not completely unhappy with my results, but I think if I'd been more prepared, he could have taken care of everything in the second surgery and I wouldn't be looking at a third.

Glad you are healing up well with no infections! That is great news. Be gentle with yourself and let those scars remind you of how strong you are.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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11 hours ago Mona2 wrote:

Hello, this is my first time posting. I had a double MX with tissue expanders in 2017. After radiation, I had my exchange to implants. I was too thin at that time to be considered for DIEP. Now, thanks to being thrown into menopause & Arimidex, I have gained weight. I am uncomfortable on my radiated side & have scheduled DIEP surgery at MSK. I am second guessing my decision & getting nervous.

Has anyone used Dr. Evan Matros at MSK for DIEP? Also, any advice or recovery stories from anyone switching from implants to DIEP after radiation?

Thank you & God bless you all!

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