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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
Dx 8/1/2001, LCIS Hormonal Therapy 6/30/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/30/2015 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 11/24/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/22/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Posts 61 - 75 (75 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 6/22/2020 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 Surgery 1/28/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/9/2021 Femara (letrozole)
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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 LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy Aromasin (exemestane) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Feb 24, 2021 04:32PM 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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Feb 25, 2021 05:42PM ppp2605 wrote:

Hi Mona,

It sounds like we share a similar story. I had my double MX in 2017, too, exchange to implant surgery beginning of 2018, proton radiation from March to April 2018. My implant on the radiated side got encapsulated and shifted up, so they looked quite asymmetrical. Had my DIEP flap surgery end of September 2020. I am fairly slim as well, but there was sufficient tissue to form 2 beautiful B-cup-sized breasts. I needed over a year to decide whether I wanted to do DIEP or not. I was really nervous, but I do not regret my decision to do the surgery. It's such a different, wonderful feeling compared to the cold and hard implants. I did not have any complications, and the result is beautiful. If you have more questions, just ask!


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Feb 26, 2021 08:00PM sharon0706 wrote:

Hi everybody. I am so grateful to read everyone's stories. You have all helped me to decide to go forward with the DIEP. My surgery is scheduled for May. I am simultaneously ready and nervous. I am very ready to get rid of these tissue expanders.

Two questions:

- What should I ask my surgeon when I see her next (one month before surgery)?

- What do you wish you had known before your surgery?

So grateful for this community and all of your collective wisdom.

Warmly, Sharon
Dx 8/1/2001, LCIS Hormonal Therapy 6/30/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/30/2015 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 11/24/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/22/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 26, 2021 10:27PM OCDAmy wrote:

Sharon,

I didn’t realize how numb I would be at the tummy tuck site and below. It took a long time and a lot of that is gone but I’m still numb almost 2 years later in the center on the tummy, around the new belly button. I did have scar revision where they lowered the tummy scar and it looks great. I’d ask about compression and how long you will need it. Also will you wear a bra after or not. I did not but some women did. I also had my hospital room really warm and had to wear a warming blanket. I’d ask if they do that too. Finally, ask if they do nerve block for surgery. I was amazed with mine that I woke up I very little pain. I’m pleased with overall results. I hope you will be too.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast
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Feb 27, 2021 06:01PM abigailj wrote:

hi Sharon - I also that numbness OCDAmy mentioned although it’s lessened over time. Hopefully you won’t have this (as you know I’m older and not very fit) but I didn’t know how limited my upper body movements had to be to avoid screwing up the bikini line incision to the point I had difficulty cleaning myself in the bathroom (sorry if this is TMI) - Thankfully the nurse’s aide made helpful suggestions so once I was home I could manage. I also used a walker for my first week at home. If the social worker at your hospital offers a toilet frame and walker and your insurance covers it as mine did I suggest taking him/her up on it just in case. My PS had me wear an awful abdominal binder for several weeks as well as a surgical bra - ask your PS if she has patients wear either or both and for how long as OCDAmy suggested

I wish you the best! Abigail


Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/22/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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Feb 27, 2021 08:52PM JRNJ wrote:

Whatjusthappened, It appears many on the facebook page had radiation before DIEP and they look AMAZING, but the Dr. put tissue expanders in before radiation. Since my tissue expander was removed due to infection, Dr. said my skin was stuck to my chest and had to be peeled off. I told my Dr. what the facebook page people said, close the flaps, fat grafting to fix size discrepancies, fix side boob. He said we can do all that. It just bothers me that I have to ask. Why is he not looking at me and seeing what needs to be fixed. He said some people don't want to be overwhelmed with information, so he takes a wait and see approach. I said you know I am not one of those people. I need information! It seems to me the very experienced surgeons plan phase 1 and phase 2 knowing you can't get it all right in one surgery. I don't know whether to continue to trust him, or to go elsewhere. I will probably for sure get another opinion at either MSK or Rutgers. It's just mentally draining. I've been in a bad place, but slowly coming out of it as I feel better.

Mona2, I didn't have implants, but I had failed tissue expanders. I think you will have better result because the skin is expanded. There are many stories on the DIEP Flap Support Group facebook page about people who switched from implants to DIEP with amazing results. Please keep us updated, I want to get an opinion from MSK.

Sharon0706, What type of incision do you have? I would ask what the flap will look like, lollipop, small football, large football. I was really shocked at what the flap looked like. I have small footballs. I asked him if I was getting a football flap and he said NO. I don't think he understood what I meant. Lollipop is much better looking. Check out the DIEP Flap Support Group facebook page there are a bunch of pictures posted. I would also ask how long you will be in the hospital. I was in for 6 days. They did not pressure me to leave until I was ready. Other things to note: I was in the ICU for the first day, they didn't feed me in case I needed to be sent back to surgery. I had to inject myself with a needle after I came home to prevent blood clots. I was not allowed to wear a bra or apply any pressure to chest. No caffeine. Had first cup today and am feeling very energetic, lol. My Dr. does not use compression binders, others do. I was heavily medicated the first 2 weeks. but the constipation was worse than the pain, so after two weeks I dropped the vicadin. You may need something to manage drains, vac pumps, heart monitor, like a lanyard. My idiodic hospital didn't even provide anything in the hospital. It was a nightmare. After I came home, it was tougher than bmx. I could go to the bathroom myself and manage my drains and medicine. But I stayed in bed for 2 weeks and my husband had to feed me and I didn't drive for 3 weeks. Started cooking and cleaning after that a little bit each day.

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 Surgery 1/28/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/9/2021 Femara (letrozole)
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Feb 27, 2021 10:35PM Whatjusthappened wrote:

JRNJ, it's a tough call on whether to trust your PS on another surgery if you're not confident in his abilities. I think another opinion is always a good idea. The good news is that you have plenty of time to think about it before you have to make a decision on what to do.

Continued thoughts for your physical and emotional healing.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy Aromasin (exemestane) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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May 3, 2021 03:42PM sharon0706 wrote:

Hi all. Thanks in part to the stories that you've shared, I am finally having the DIEP flap reconstruction a week from today. I appreciate you all sharing the ups and downs.

After looking at my abdominal CT scan, my surgeon told me I might need to have a delayed DIEP if the abdominal blood vessels aren't what they need to be, in which case the surgery would be delayed by three weeks. I'm trying to find the balance of lowering my expectations and also hoping for the best.

Thanks again.

Sharon

Dx 8/1/2001, LCIS Hormonal Therapy 6/30/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/30/2015 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 11/24/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/22/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 3, 2021 04:05PM - edited May 3, 2021 04:06PM by abigailj

Hi Sharon - fingerscrossed that everything goes well and you have a great outcome. Again, please be patient with yourself, take it easy and don't overdo physically while you heal and remember that you won't see the actual results until the swelling goes down etc. which too a few months for me


let us know how you're doing when you feel up to it.

Abigail

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/22/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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May 3, 2021 05:59PM indahood wrote:

Good luck, Sharon. I'm now 4 months post op and feeling pretty well if not a bit tight in areas of my recovery. I have to remember to stretch otherwise I might not get my flexibility back.

I am hoping you get it all done at once as you would wish, but I'm sure either way it's a great choice. That's coming from post op. My recovery wasn't too difficult just slow. Not much pain so that's all good.


Cheers DIEP sista,

Laurie

Dx 10/30/2017, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR-, HER2- Surgery 11/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 2/1/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3DCRT Surgery Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 3, 2021 06:08PM Whatjusthappened wrote:

Sharon, I know how hard it is to wait once you've made a decision on what you want to do. I hope everything looks good for you to go ahead as planned. I wish you a speedy recovery and good results.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy Aromasin (exemestane) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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May 5, 2021 10:23PM allietx wrote:

I had DIEP about 18 months ago. I did not want to have implants and deal with upkeep the rest if my life. I would do it all again. I had a double mastectomy on the same day, so that added to my recovery time. It wasn’t easy and the first week I questioned my sanity! I improved each day and now I am healthier. I still have not had my revision surgery yet. I love my PS, so make sure you have one skilled in DIEP.

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