Going flat after DIEP?

tetera

I posted something similar to this in the reconstruction section but thought this may be a better location.

I’ve seen a lot about “explanting” but not so much about this:

Has anyone had their DIEP reconstructed “foobs” removed and gone flat afterwards? If so, what has your experience been like?

Thank you!

Runrcrb

I’m going to predict that you won’t hear of too many people removing their DIEP breasts for reasons other than a failure of the flap. I’ve had mine for 18 months and it looks and feels (when I’m using the muscles beneath and around it) just like my natural breast. I do not ever expect to remove it.

tetera

Runrcrb, I’m guessing you are correct, but I feel like I had to ask. (I had a BMX in October with immediate DIEP recon. Had revision surgery in December.)

LAstar

I would consider removing my DIEP/SGAP breasts if I had a recurrence, but otherwise I hope to be done with surgery!!!

teaka123

Tetera, I'm curious why you are asking about a DIEP reversal/removal of foobs. Are you unhappy with your results and if so, why? I plan on having DIEP in a couple of months and haven't spoken with anyone unhappy with the procedure.

tetera

Hi teaka, sorry for the delay in my reply. I was very, very unhappy with the results initially (my whole body looked awful, and I don't think I had very high expectations going in) but did have a revision by someone else (long story but didn't have a good PS despite him being recommended by my BS) and was told it would be "one and done" because, like LAStar, I had hoped to be done with surgeries! (I have had over a dozen surgeries, but only three of which have been breast-related- so far!) They do look good now (I think!) after the revision (again-totally different PS this time) but I am very uncomfortable and experience a lot of pain. (Also, the recovery, especially from the initial surgery, was a nightmare, and, again, I'm not new to surgeries, breast or otherwise.)

Honestly, more than anything, it is the pain. Mostly I still have sternum pain but it's different from how it was initially after surgery. The NP at the BS doc said that ~50% of DIEP patients have chronic pain afterwards. She did also say that some of the pain could be from the "breasts" pulling on the sternum and that can happen with implants as well. I also have what kind of feels like if I had a horrible sunburn and someone was raking across it across the foobs themselves...but not all the time.

I honestly didn't know about that my sternum would be messed with during the DIEP flap operation; I was not told that any part of this area would be cut/removed. If I had I don't think I would have gone through with it, but that is honestly hard to say. There is also pain most nights that wakes me up and I can now sleep only on my left side (if I move to a different position during the night I wake up with a different kind of chest or shoulder pain; I'm sorry I'm not describing this well).

Pain aside, despite the "breasts" being made from my own tissue, they do NOT feel like mine. I feel like I am hauling around globs with weights inside them and nothing about it feels natural. I had really big breasts when I was young; had a reduction when I was 21 and this is nothing like that. I also don't miss my old breasts (pre-reduction or otherwise), it's just that the feeling of the foobs is awful.

I know a lot of people are really happy with them and I am so thrilled for those people, but this isn't for me. Unfortunately, diiscussion of BMX without recon was never an option. When the (original) PS asked if I wanted an implant on one side if one flap failed I did say no, to just remove the other reconstructed breast. He was absolutely horrified and told me I would not be happy without reconstructed breasts. He had also really, really, tried to push implants on me when I said I didn't want anything foreign in my body; all of these thing were red flags that I wish I had recognized. (Again, I know a lot of people are really happy with their implants; it just isn't for me.)

In retrospect, I was pushed a lot in general, saying I was too young to not have breasts (I was 35 when I had my BMX and recon) and I also feel frustrated by that. My breasts had already done everything they were "supposed" to do to the best of their abilities, and there are plenty of older women out there who it seems hadn't been even given the option to reconstruct because they were of a certain age. My age sure shouldn't have anything to do with it. I was assured by the NP at my BS's office that they now offer reconstruction to EVERYONE, no age limit, so on that side of things, it's good to hear.

TL;DR- Foobs/sternum hurt/don't feel like mine despite being made from my own tissue; bad experience overall.

LAstar

Hi, tetera -- I'm so sorry to hear that you are in pain. It sounds like your original PS was a real vulture. I experienced that with my local surgeons -- they were like used car salesmen. I later heard that they have injured a number of women in our town. My flap reconstructed breasts did not feel like mine for a long time, maybe a year. I kept telling my husband that I feel like I have a couple of hams duct-taped to my chest (given that I originally had SGAP, it's not too far from the truth). Now everything feels pretty normal, but I'm 7 years out from my SGAP and 4.5 years out from my uni-DIEP. The sternum pain lasted for me for about 5-6 months, I think. Have you had your sternum X-rayed? If they fractured or broke it, it would still hurt. My sis-in-law broke her sternum horsing around with a friend and it took a long time to heal and there was not much she could do about it. You could also request your surgical notes to see if they mentioned anything. I found out, with another surgeon's help interpreting, several things that happened during my surgery that no one ever told me about. I hope this resolves for you!

tetera

Thanks LAStar- I did get my notes and similar situation- lots of things I didn't know that happened (like them including mesh without telling me and adding a surgeon I didn't know, ugh). I went over the notes with my BS and she explained everything to me, including the parts about the muscle/cutting with the sternum but I don't remember it vividly as I had a bad PTSD episode after the surgery (I already had chronic complex PTSD, a lot of which is medical based) and that was almost 9 months ago. I haven't looked at the notes since then; honestly reading medical reports like that is a bit triggery for other PTSD-related reasons.

I am giving it about a full year to get used to it IF I end up having the foobs removed; I wanted to give it more than six months for everything to heal after the revision to even talk to the good PS again even though they kindly offered me a next day appointment when I called last month. I'll be seeing him the end of this week to discuss things (it's been more than six months since the revision now).

Honestly, the pain seems to be getting worse; it was better for awhile after the initial revision (I think because things were still numb) and then things have gotten worse. It's not just the sternum pain; the two hams thing sounds familiar. Wearing a bra is incredibly painful but at this point things are too settled so I have to go with one of some sort. So I basically feel like if I WANT the look of breasts I'll just get prostheses and be more comfortable the majority of the time with nothing instead.

tetera

Also, of course I don't WANT to have more surgery, especially as initially this was supposed to be a "one and done" situation. However, something needs to be done; there is actually pain within the foobs, too...it's difficult to describe, and I can't just go to any formal situation wearing the soft bra I am sometimes able to wear, but I can't go without anymore (that worked for a few months). Maybe I'm just looking for extra excuses at this point- I HATE the way they feel and the way they make me feel (if that makes sense) and just want them GONE. Just waiting a bit longer since it is a permanent decision and since I've gone through so much surgery already; didn't want to make a rash decision no matter.

Feeling a bit better after hearing the BS say if I want to go flat I should go for it. Haven't heard from ex-planters who regretted their decisions but I know this is a slightly different situation. (Just wish I had considered all of this before the DIEP in the first place; I feel so naive for not really knowing flat was an option, women in my family didn't discuss any of their reconstructions, or lack thereof, or those of their friends or our late family members until AFTER I had mine.) Heck, I didn't even know most of the women in my family even had breast cancer for a long time; it doesn't seem to be taken seriously or discussed but even typing this out now makes me feel like I need to be more vocal because I haven't exactly been open about my experience with most of my friends or family, either.

LAstar

tetera, that is a tough decision! My hope for you is that you don't still have pain after having them removed. I'm glad you are giving it some time. I hope the pain and discomfort resolve so you can be done. I agree that going flat would have been a lot easier. Don't beat yourself up about the decisions you had to make during such a hard time. Without these discussion boards, I would have had no idea about so many aspects of reconstruction. If I had known then what I know now, I probably would have not opted for reconstruction. My results look great, but it was a long ordeal and mine are still too big. Breast cancer gives us nothing but crappy options.

AliceKo

Tetera, oh goodness. You had one heck of a "journey" as our very positive 'friends' are calling it. Sorry to hear about it. I did not know that you could removed DIEP, they told me it is final and permanent. But i sounds like you should try to do that. Otherwise you just have to settle living like that and that does not sound good. Best of luck to you. Hope your experience improves after the surgery.

I am scheduled for explant and DIEP in July. post mastectomy pain for 2 years. Hope it helps

tetera

Well, I basically got told "no," not because DIEP reconstructed breasts cannot be removed (was told they can) but because the PS said he "REconstructs" rather than "DEconstructs." Felt very dismissed and talked over every time I tried to bring up a point at all and then was told the surgeon, though he said he knew he was, of course, capable, had done only one of these in the past decade. (Extra frustrated because I asked the people over the phone if he had done this, if he had photos, etc. so we wouldn't have to go in there if it wasn't necessary- an hour and a half drive each way, husband had to take off work, expensive tolls and parking, and had to find care for our children who have special needs).

Of course because it is Friday evening there is a limit to what I can do. Emailed the nurse of my BS again to see if she ever does this sort of thing and though I hate to see a new doc, also contacted a PS who does breast care and "top surgery" and briefly described situation; also have the name of another surgeon from "Not Putting on a Shirt" but she is even farther away/in another state so we will just have to see. Wouldn't be SUCH a big deal except for our kids.

Really wishing I had just chosen never to reconstruct in the first place at this point. I guess, assuming I'm able to have the "foobs" removed at some point, that I'll never have to ask myself- "what if?"

Edited to add: PS also told me I would have to deal with prosthetics "all the time every day", wash them, etc. and that if I didn't then none of my clothes would fit properly. Was not planning on wearing them hardly at all; maybe for special occasions. Just like the first PS, clearly didn't understand the possibility that anyone could possibly want to be flat chested.

Momba

Tetera, I have had the same experience. I had my surgery in 2009 and I still have pain. For many years I thought that I just had to live with it. For the past few years I have been fantasizing about what life would be like flat. I had DIEP on one side. I have the sternum pain and also the surface pain although I wouldn't describe it as feeling like a sunburn as you have. It's more like a sharp pain near the lollipop incision when it is touched by a bra or sometimes when I am trying to adjust it inside a bra. I too feel like it is just a big heavy glob. I hate it so much every single day. I just want them both gone. I experience extreme anxiety every year when my mammo time is approaching. I am absolutely terrified that it will have reoccurred in the other breast. I want to be done with the pain and done with the anxiety. I think I am finally going to start investigating removal.

tetera

Momba, oh no, since 2009? I'm so sorry! I also had that anxiety every year around mammo time.

Update on my situation, hopefully it may help: I had to find another surgeon who was capable of doing DIEP in order to have the reconstructed "breasts" removed, but it ended up working out so well. I had them removed almost exactly a year after having the original BMX/DIEP and it was like I was given my life back.

The people at the BS's office offered to give me a rx for custom prostheses but it has now been almost two years since I've "gone flat" and I haven't looked back. A family member also made me some "knitted knockers" which look great and are very soft and light but I have never felt the need to wear them (besides trying them on).

I have zero pain, I can sleep, clothes fit better, I never have to wear a bra, I feel so much more confident and comfortable, and I just don't really think about my chest anymore, which is something I couldn't have imagined before; I have one annual appt for a manual check up with a nurse at the breast cancer center - no more mammograms. (And FWIW, husband still find me very attractive, if anything, even more so!)

The PS who did the removal told me there was a decent chance I may still have some pain afterwards, but this is the first time I can remember being truly pain-free. No sternum pain, no "burning" pain, no pulling, no pressure, don't even have that discomfort from drinking cold water that I used to get - and no more mammogram anxiety. Again, the best way to describe it is that I have been given my life back.

Charlierun

Hi, I am so glad I read this topic about going flat after diep! I have been considering a prophylactic mastectomy as I have a BRCA2 mutation. By reading what several of you have gone through it really provides me a complete picture of the possible complications resulting from this type of surgery . I will be interested when I talk to my Plastic Surgeon regarding the informed consent prior to diep surgery if they mention the possibility of mesh in the abdomen and or removing part of a rib or affecting part of your sternum. It would be rather crazy to do this prophylactically and then endure lifelong chronic pain following for the sake of keeping breasts. I’m so sorry for the surgical complication some of you have experienced and I hope that you’re in a better place physically and emotionally now.

mightlybird01

Tetera I am so glad for you that you are painfree! I had a UMX with no reconstruction (my Drs. immediately accepted my decision to not have any recon and I was considered "young" at 49) and I could not be happier either. No pain whatsoever, and no mammogram on that side anymore. I do wear a bra with a little "stuffing" in so that it matches my other breast and I look and feel just like before. My husband also does not seem to mind that missing breast in the slightest :-)! Flat is perfect, at least for me!

Carpe-Diem

Yes -- I took out a DIEP breast and went flat. I had a BMX in 2014, and immediate DIEP reconstruction using my abdomen fat. The surgery took over 8 hours and the recovery was not easy. Mentally, I was happy to see a breast on my chest. I had two revision surgeries in order to make the two breast more even and similar. I had some necrosis which was taken out in the second surgery because it was causing me pain. While my chest looked pretty good, and everyone complemented the foob, it never felt great to me. Parts of it were hard (maybe necrosis) and some pain on the outer part of the breast. I was told the pain was due to radiation. Well 7 years later and I had something growing near the chest wall -- and yes it was cancer again. Different type from the first go around, but cancer. In the first surgery in January 2021, the surgeon and plastic surgeon took out the tumor and left me with a deformed breast assuming I want reconstruction. It looked so bad, and knowing that I would be having more radiation, I decided that I do not want multiple surgeries to create a new breast. I went back to my breast surgeon who did a complete mastectomy in late February. Now I am flat on one side. Frankly, if I had the energy and it was ok with insurance and the surgeons I would go flat on both sides. I am using a prothesis on one side and it is not so bad. Getting used to it. I have read a lot lately, and it appears that the surgeons assume everyone wants reconstruction and they do not even offer the option of going flat. So you need to advocate for yourself ladies.