failed reconstruction following prophylactic mastectomy

rinaina · 12-28-2014, 12:48 AM

Anyone else experience failed diep following double mastectomy? Had surgery on 10/17/14 and a little over a week later found myself back in the OR for deriding of necrotic tissue and lost all of the right flap and left with a huge open wound and a small wound on left breast. The left healed well and the right is still healing but very small with the help of a wound vac preceded by a few different dressings and prescription ointments and dressings. Researched my choice of plastic surgeons and chose one based on friends and drs recommendations after consulting with 2. I was so sick with high fevers and wounds which has now left me feeling insecure about future surgeries to correct the failed reconstruction. My left breast only needs a reduction and lift but the right breast would require more, tissue taken from my back, healing, an expander, implant if expansion is successful. So fearful of failure again but don't want to end up looking like this forever. Any thoughts, suggestion or input.

Dakini52 · 12-28-2014, 08:24 PM

I had a failed expander input. Developed sepsis and landed in the hospital with a 106 degree temperature. I believe that event took more out of me than all the chemo and treatments I had up to that point. I decided I would be happy with my one breast and not do any more surgery. It's a personal decision and each of us have to weigh what the risk is against what the reward is.

Hongdo · 12-30-2014, 04:15 PM

Hi, I also had a failed DIEP flap reconstruction this year (in June). It was on the left side and was a delayed reconstruction after having a mastectomy in jan 2013. I was incredibly disappointed and, like you, my only choice now is tissue from my back and an expander. I am planning of having that done in sept 2015 - once I have healed properly. I am also worried about another failure but must accept that it's possible but worth a go. Good luck with whatever you decide to do.
I understand that DIEP failure is not common - but you are not alone in this and have my sympathy x

Deb33 · 12-31-2014, 02:59 PM

I had a failed implant due to infection a couple of years ago. My PS made me wait 8 months before he would reconstruct with a lat flap from my back along with skin. The end result looks good but the surgery is pretty intense - very similar to the mastec - drains, limited movement, etc. BUT I love having 2 breasts - numb and scarred but still make me feel a little more "normal". Take your time - let yourself heal and interview docs and their patients. You'll know the right path to take.

Hongdo · 01-01-2015, 01:17 PM

Pleased that you eventually got breasts you are happy with. I am so nervous about going through surgery again - hopefully by Sept my poor body will be healed enough for it to be successful. It's really encouraging to read positive experiences.

rinaina · 01-02-2015, 12:59 PM

Good luck to you. I hope we both have success with our future surgeries and expanders and implants. It would be nice to look symmetrical.

rinaina · 01-02-2015, 01:03 PM

Do you have to wait that long, until September? I thought my PS said a few months healing then the flap from shoulder blade then healing a few months then try expander which could take a few months for proper expansion, then implant. Any thoughts people on saline vs silicone implants? I'm thinking saline is much safer.

Dakini52 · 01-02-2015, 01:47 PM

Just be careful if you have had radiation to the breast area. Expanders and implants tend to be much less successful when attempted in a radiated area.

http://www.breastcancer.org/treatmen...types/implants

My plastic surgeon who is highly regarded in the area was sure he could do it but it was unsuccessful.

rinaina · 01-02-2015, 02:07 PM

Even if you've had a double mastectomy?

jaykay · 01-02-2015, 02:59 PM

I have silicone implants; they are much safer these days and feel more natural . Both my breasts were radiated in the past (see my sig) and while the latest zapped breast is a bit harder, I'm very satisfied with the results. I just did straight expanders with implants a year later. I'm sorry you are having such difficulty

Hongdo · 01-05-2015, 01:29 PM

The PS suggested that the DIEP failed due to the skin having had radiation but surely most women would have had radiotherapy if they needed a mastectomy. No good to rake over the reasons it didn't work just have to look forward now. I am leaving it til sept so as to give my body as good a chance as possible - that gives my body well over a year to recover. Trying not to raise my hopes up too much - grateful to still be here.
Hope we are all successful x

Debbie L. · 01-05-2015, 07:36 PM

Rinaina, so sorry you're having these hard times. I have not had reconstruction, so have nothing to contribute to that discussion.

But I cannot resist a ramble, totally devoid of evidence to support it. I'm usually all about evidence-based practice, but what follows is NOT evidence-based, at all (disclaimer).

About a year after bilateral mastectomy (but only a few months after completion of radiation), I had a pouch of fat/breast tissue persisting on the bc side, which annoyed me both cosmetically and risk-wise (weren't we trying to get rid of breast tissue to decrease the risk of a local recurrence?). I pointed this out to my uber-anal surgeon, and he agreed we should remove it, in a simple, quick outpatient surgery (also removing one of higher, more-visible tattoo marks from rads). It WAS a quick, simple, procedure -- but I developed a seroma and a RAGING infection on that whole side of my chest. I think it got so far out of hand because his office nurse blew off my complaints, but that's another issue. I got really sick, before he saw me himself, drained the gross amounts of pus, and changed antibiotics. Apart from wishing I hadn't gotten so sick, I didn't think anything of it, cancer-wise, at the time.

But then, I read a book about a Dr. Coley, who at the turn of the last century, had done "research" (in quotes because research then was very different from what it is now) on seemingly spontaneous remissions of cancer after infections, and had tried to induce same in patients. The book is called "A Commotion in the Blood", by Stephen S. Hall. It was recommended as reading for me (before a DOD/Era of Hope seminar on the topic that we co-chaired) by Lupe Salazar (UofW and Nora Disis) -- so not something out of the mainstream. It's an easy and entertaining read. For me, it was hard to put down, better than a murder mystery!

With my stage 3 diagnosis, and losing the toss in the adjuvant Herceptin trial, I really hadn't expected to be still here. As the years have gone on, I've been delighted to see more and more not just about vaccines for cancer, but about harnessing (tricking) the immune system in a more general way to stop cancer. I think back to that raging infection I had. Could that be what tipped the scales for me? Of course, no way to know. It's a crap shoot. But, I offer this ramble in hopes that maybe you'll look on your troubles with infection in a slightly more positive perspective?

Best of luck to you. Let us know more, as you move forward.

Debbie Laxague

PS to Hongdo: I don't think most women have radiation after mastectomy. In fact, some women choose mastectomy over lumpectomy to avoid radiation. It's recommended if there are a lot of positive axillary nodes, but in the range of 1-3+ nodes there is not a lot of evidence of benefit (yet). And typically, I think, not recommended at all if the nodes are negative.

sassy · 01-05-2015, 09:11 PM

Debbie,

Thank you so much for this post. I too had a significant infection that landed me in the hospital for a week---just a few days shy of a YEAR post mastectomy. I have not previously heard of the infection theory but now know what my next read is!

JessicaV · 01-06-2015, 01:46 AM

Hi,
I am so sorry to hear the difficulties you are having. I have not been there and cannot help apart from offering my sympathy, but I know of a good resource that could help you.
Here in Australia we have an online network called BCNA (breast cancer network of Australia), and within BCNA a woman named Louise has set up a fantastic breast reconstruction group
http://www.bcna.org.au/group/61026
which you should be able to join, and which is full of women who are likely to be able to answer your questions and share your recon journey to find good answers.

JessicaV · 01-06-2015, 01:50 AM

Oh, I did know a young woman whose mother had a similar disaster, with an unhealed fistula into her stomach, and her body badly twisted because of adhesions pulling her upper body to the side in a really deforming way. They found another surgeon who was able to do a magnificent repair and she ended up with breasts and stomach she was very happy with.

JessicaV · 01-06-2015, 02:07 AM

Debbie, what you say is facinating. I think part of the problem is that the issue of cancer stem cells, and how to get the immune system to identify them and attack them is the Cinderella of breast cancer research at the moment. The current fashionable paradigm centres on surgery and the molecular grouping, ie luminal, basal, HER2+molecular structure, and then determining chemotherapy/targeted/hormonal treatment on the basis of that. Plus radiotherapy also-rans. But that paradigm only treats tumors, esp primary tumors. It does not deal with the released cancer stem cells which are the how and why of metastases, which are what is likely to kill us if anything does.
And the researchers looking at cancer stem cells tell us that Trastuzumab seems to hit cancer stem cells (and flag them for destruction by the immune system) until the cancer stem cells find devious ways to mutate to avoid having to use the blitzed bit of their process.
But the same researchers say that there are foods that hit multiple cancer cell pathways. These foods include broccoli, tumeric, soy, tea, and also possibly onion, tomato, garlic. So personally, I have become a curry maker delux.
I am sure the immune system holds the answers.

rinaina · 01-11-2015, 05:03 PM

Thank you everyone for the replies. I too am so afraid for the future surgeries I will face to give me breasts. The left needs a lift and a reduction following an unsuccessful diep flap that left me with an open wound that has healed but the tissue where wound healed is a very red rigid tight band of tissue. The right breast wound is still healing but much smaller now. Sure hope in a years time I'll be posting a success story. Anyone know top plastic surgeons in Chicago or Chicago burbs?

JessicaV · 01-11-2015, 10:52 PM

Hi Rinaina, I don't think anyone answered your question about whether radiation treatment interferes with the success of expanders and implants even if you've had a double mastectomy. I understand that irradiation of the breast skin and tissue leaves that skin/tissue harder and a lot less able to stretch, which is what it needs to do for expanders and implants to work. If your mastectomy removed the irradiated skin and the surgeon drew un-irradiated skin up to stitch together, I would guess that you would not have a problem. But if the irradiated skin is still there, I think it is likely to be a problem.

Hongdo, Of all the women who have had a mastectomy for primary breast cancer, mostly only those who first had a lumpectomy with radiation, and then later had to have a mastectomy, will have had radiation.

When initial surgery is mastectomy, I gather radiotherapy is mostly only done for close margins or positive nodes or some rare kinds of BC. So many mastectomy patients have never had it, and thus have a lot more choices for reconstructive surgery.

rinaina · 01-11-2015, 11:11 PM

Well I had radiation to the right breast but the mastectomy removed the radiated tissue as did the debridement of the necrotic tissue after reconstruction, so now that breast still has some wound healing to do. I imagine like the healing on the left breast the tissue once healed won't be very flexible but rather rigid and tight, almost scar like, which is why at some point i will need to get tissue from the back shoulder blade in order to have a shot at an expander. This entire issue has been extremely depressing and emotional and I can't believe I allowed myself to get into this mess. I should have just had the mastectomy let it close and heal and then down the road deal with expanders and implants. I dropped the ball on this one big time.

JessicaV · 01-11-2015, 11:48 PM

Hi Rinaina
I have seen problem like this happen to a number of women on the breast cancer scene, including the lovely woman I mentioned in a previous email.

I think women don't get a guide, a flow chart or a road map showing how the different choices we make and how the outcomes of those choices then affect the next set of options, eg
1) that lumpectomy plus radiotherapy now means that
a)if it proves sufficient for clear margins etc and
b)if there is no local or regional recurrence and
c) if everything heals well,
you will be left with two fairly matching breasts and if this is medically recommended and this outcome is important to you, this is a good choice for you so long as the following is fine with you too:

2)if you later need more breast surgery,unless it is a new primary cancer in the other breast, it will have to be a mastectomy or double mastectomy, and any reconstruction will be done with skin that has been damaged by the radiation, so the option of expanders plus implants is not going to be a very workable option for you. So they have these more complex surgical processes available including deip and tram etc. If you have those done to both breasts after double mastectomy,
b)if there is no further local or regional recurrence and
c) if everything heals well,
you will again be left with two fairly matching breasts.

3)And that if you only have one breast mastectomy done, you may need several extra surgeries to get them to match, and even if you have two done, you may need several extra surgeries to get them to match.

It bothers me because this could be spelt out by surgeons and oncologists working together, providing flow charts of possibilities/probabilities. But it isn't provided, so we are not able to make choices in full knowledge, and are not prepared for the possible outcomes. We don't discover these things until suddenly we fall into the middle of them and find it incredibly distressing and also blame ourselves for not having found out enough info, and making a choice that ends up causing us distress.
I don't think you dropped the ball at all. I really feel for you and what you are going through at the moment. I do believe that you should have had better info from your team in a way you could make sense of and work with in the trauma of the moment.
But once you get together the energy and umph to get back on the horse, with a good surgeon, you can get there and get what you want and deserve.
best wishes
Jessica