DIEP Flap Reconstruction 2017
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houmom- oh yeah, I completely understand! Coop me up with little outside stimulation and worry takes over. Time is your best friend at this point.
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houmom:
I am just at 6 months from initial surgery where I had the mastectomy and reconstruction at the same time to one breast. I am still healing and adjusting. It really does take a lot of time. I unfortunately had it pretty bad after surgery as my breast below the flap went completely purple and ashen. I blistered/peeled/blistered/peeled for weeks and finally by October the last scabs that formed came off. I still have some swelling and it feels harder under that area but just this week I started to notice the hardened areas have decreased in size and the red scar tissue does seem to be shrinking - very slowly but it is.
The problem (and that term is weird in this comment) is that the 'footprint' of the breast is perfect. The way the reconstructed breast lays, cleavage etc. matches my healthy breast perfectly. The healthy breast will probably get a little bit of fat graphed into the upper part to even out the fact that the reconstructed breast is fuller at the top. I thought I would be looking at surgery to lift the healthy breast but we aren't planning that now at all. Basically, if I wear a sports bra and remove the little padding from the left side of it, no one would EVER know I had a mastectomy. BUT, that means leaving some of the harder scar tissue that is on the lower half of the reconstructed breast. If we removed that in the second phase, I would lose the great shape and then would definitely need to lift the right.
For anyone that wonders, I never had debridement, we are not looking to shave any scar tissue and when it is all said and done, I will more than likely go in for some beautiful tattoo work and design. My PS reminds me that removing scar tissue through surgical means can sometimes create more scar tissue.
I kept being told to be patient and I think we all need that reminder. 4 weeks out from surgery is really nothing. Give it more time. I have some great essential oil recipes for my own salves and oil mixes that I have used that kept a lot of the major scarring down. If anyone is interested, just PM me. I don't sell oils or anything and offer the info for free but wasn't really sure if it was appropriate listing the info here. I will say one of the best things you can do after scabbing is use cocoa butter or shea butter on that area and not the products you find at a drugstore or Walmarts, I am talking about the pure stuff. You don't want the other ingredients.
-Best of luck ladies!
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ladies it’s rare for me to come on here but wanted to let everyone who is having diep flap know there is light at the end of the tunnel... my mom is scheduled for her tentative last surgery for mid feb.... this is just the final cosmetic portion and her surgeon is building new nipples out of tissue.... it’s almost a year ago my world shattered and I never thought my life or my moms would be normal again..... our lives are better than ever and we appreciate life... just wanted to give positives vibes to people on this journey
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Thanks everyone, I just need to hang in there. It’s just hard when I feel better in virtually every other way, my abdomen scar looks great, I am back to wearing jeans and driving and sleeping flat in my bed, and the left breast looks fine. I think I’ve just been lucky to have healed so well everywhere else, and I am struggling to have patience with this one roadblock. Well I’m seeing the PS tomorrow anyway so will get the good/bad news officially then I guess!
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I actually had a conversation with a oncology surgical nurse. She said that up to 50% of the surgeries she sees that involve reconstruction right after mastectomy and 30% of just mastectomies result in some form of necrosis - from top skin layer to deep layers.
I think those percentages are too high and if that is the case, more needs to be done to figure out how to get a better outcome. It all has to do with loss of blood flow. But - are we not the biggest fighters of all?! Yes, so we hang in there and share our experiences and help each other.
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Hi LMichele. Lula73 did a great job of answering your questions. I'll try to do the same in case it might be helpful.
First, on the fat necrosis, it's still early so I would say wait and see. I have some hardness on both sides that I am still working on with massage. I had a large lump mirroring where my port is on the other side. My breast surgeon wanted it removed. My plastic surgeon warned me there would be a scar. It was on the very edge of the flap. It was removed in early December. The scar has healed beautifully and I barely notice it.
Make a list of questions and ask both the nurse and the surgeon. I completely get the notion of the anxiety waiting for the surgery and wondering if this is it with your results. It's a complicated matter and only time will tell.
I still can't wear pants. I have a troublesome wound site on one side of the abdominal sutures. I started wearing an abdominal compression binder a few weeks ago. So far no change. There is still significant swelling in the area above the sutures. Not fun. As you are a sporty girl and years out from chemo, I would expect your swelling to subside. PM me if you need the name of a physical therapist. Mine specializes in lymphedema and has been excellent. It's one thing to be told to massage. The physical therapist can demonstrate the best technique and provide advice on frequency.
On the subject of sleeping, i was not sleeping in bed until 8 weeks after surgery. The purchase of a mattress topper was all it took. This addition made all the difference. Sleep is now a haven. The brand was isotonic. It's medium blue and instead of egg crate style, it has rows of swirls, lines, and triangles. I found it at steinmart. Sleep is so important to healing.
As for your 5/29 surgery, if you are having your nipples reconstructed, you will be amazed at how quickly they heal. Mine were completely healed by week 3.
It sounds like you are doing great even though it may not feel that way. I wish you a speedy recovery. Apologies for not getting back to you sooner
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Suburbs, I haven't gotten on here in a while but hey! thanks for your reply. I was about to PM you but then thought better, for those maybe needing this info.
I was wondering more about two things, I think happened to both of us.
1) open wound on incision: I had a final section of scab (~ 1.5 inches long) fall off about 2 weeks ago and it was a shock, there was like a cavern underneath! I cried and cried, was so worried, went down to Penn for a nurse visit (she was terrible at bedside manner) Now I am doing daily "packing", they speculate it will be maybe 6 weeks till it closes? I do have my next consult in about 2 weeks but in the meantime it's such a worry! its yukky looking, and it feels like it will last forever. Was this what you had? why were they not able to fix in the Stage 2?
2) fat necrosis: I am almost positive this is what I have, not swelling. I think the swelling is all over. The left side is (almost too) big and soft, very nice. The right side is way smaller, much smaller than it was after surgery. with a kind of sunken in circle where the flap window is. (my flap window is different cause I didn't have immediate flap recon). The area that is hard has been the same all along, a defined large triangle at the top, massage not making any difference. How did Dr. K rebuilt the area where the necrosis was removed? How much of the lipo "took" or is it too soon to know. How are the lipo donor sites doing?
I am finally feeling the ab swelling go down and wore my (stretchy) jeans finally for the first time 2 days ago, for going out on my birthday! so 9 1/2 weeks out. Now that I have an "open wound" I am more patient about the swelling, after all, there is OBVIOUSLY still healing going on. I have also been wearing that white hospital binder when I am at home, really tight, and bought a few more pairs of spanks-like undergarments for work, so I am pretty well compressed. which can make me feel cranky tbh!
I am trying to put more jog into my every-other-day 3 miles and yesterday I went skiing!!! Not being active like normal has been hard, a little endorphins really help.
Good luck everyone
and thank you!!! JGIO2960 for the encouragement from down the road!!!!
Michele
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(Suburbs, I just realized i think I remembered wrong, & we don't have same doctor??)
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Anybody get a very late infection on the DIEP breast? Mine was looking great almost 2 months after Stage 2 (8 months after DIEP surgery), then yesterday the skin turned pink and warm, with the pinkness spreading outward overnight to cover most of the breast. No pain and my lymph nodes aren't swollen. On antibiotics now, but it has me worried! The PA said it is very unusual to see an infection so late in the process, but she was stumped what else could cause this.
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hi aquilegia, I had asked the same question at the plastic surgeons office. It is unusual. I hope your infection resolves quickly. Hang in there.
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I am going in for my Stage 3 tatoo tomorrow. A little nervous but breast is pretty numb so I don’t think I will feel anything. I was heading in to this week excited this was the last phase of my reconstruction. Then had a couple of things happen that has me a little down. I went to see my lymphedema PT and she wants me to wear a sleeve and gauntlet for a month. My arm where the lymp nodes were removed went up about 3.8 percent compared to my left only going up 1 percent. 😟It is still under the 5% where they become concerned but she just thought I should see if it makes a difference. I will be in Florida and worry about it being so obvious I am wearing the sleeve and will have to deal with questions. I also spend a lot of time on the beach and by our pool. Then yesterday I was with some women friends and was telling them I was getting my tattoo tomorrow. I said it shouldn’t hurt because it was numb and kind I’d like dead weight. One of the women said “Whow, to much information”. I have discussed all of my breast cancer diagnosis and reconstruction procedures before with this group. The woman who said it has had breast cancer and a lumpectomy. It has bothered me since yesterday. Just not sure exactly what I said that would of got that reaction from her. I also feel if I had been discussing getting a tattoo on my numb, dead weight leg she wouldn’t have responded that way. Just because our cancer was in our breast we have to be careful it doesn’t offend someone discussing it? Has anyone had an experience like this? Just not sure what I said wrong.
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congrats on getting those tats, RLSteadman! The finish line for recon is in sight!!🎉 on the sleeve, did she fit you with one? Finding one the right size on your own is not always easy. And at least it’s Feb and not July. You have to find the positive in all of this or it just drags you down. On your friend’s comment, I’m guessing it was the deadweight part of the conversation. I find that those who have not had mx (with or without recon) tend to be a little more dismissive and/or offended when we talk about something related to mx/recon. It’s like they either feel we made the choice to go this path and deserve the effects and hearing about it horrified them/grossed them out and therefore want to hear none of it. Or the thought that they may be in our shoes one day terrifies them and if they don’t hear it, they don’t have to think about it. Just my $0.02
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Lula73-
I am getting fitted for the sleeve tomorrow after my tatoo. I’m not sure why she she reacted that way. It’s was when I said deadweight she said it. It’s hard when people make comments and don’t understand what you have or are going through. When I was going through the DIEP surgery people alway commented about the tummy tuck saying they would love to get that. I wanted to say say sure get breast cancer, have a MX and reconstruction and they too could get one. Now I have to deal with a funny body shape, pants that fall down and a bulge below my stomach incision. Not sure the “tummy tuck” was worth it. Sorry about the rant!0 -
No problem, RLSteadman. That's what we're here for. I had to go to the endodontist today who I haven't seen since shortly before my diagnosis. I had to inform her of the diagnosis, oophorectomy and AI usage. She's a really nice lady but as I'm telling her this it looks like she's looking at my hair (which is about 4" past my shoulders, very fine and silky, and while not thick, can't be called thin either). Then I felt like I had to explain why I have my hair-no chemo, just BMX w/recon, ooph & AI therapy. She didn't say anything other than what AI are you taking? But her expression was slightly disbelieving what I was telling her. Almost felt like the question was to verify I even knew what I was talking about. I don't know, maybe it was just me.
Where did you have your DIEP done, again?
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Lula- My BX with reconstruction was in June 2017. Phase 2 was In November 2017. I also didn’t need Chemo. Guess we just need to keep looking towards the future
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I guess so. Did they not do any abdominal work (ie lipo) during your phase 2?
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RLsteadman: I have had friends say "can't wait to see your new rack" "hope you are enjoying the results of your surgery" "let me see your new flat tummy!" (about 2 weeks after the surgery) etc. It sure can hurt and it really sticks with you. No one wants to hear you launch into the litany of trials this whole process is.
How did the tatts go? Mine didn't really hurt (had them done w/ the implants) now will have them done again at some point down the road.
Michele
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Just an update on my tatoo. It was cancelled Thursday morning because the tatoo person had a back issue. It has been postponed until April when I am back in Minnesota. I have been sick so I wasn’t to disappointed. I did get my lymphedema sleeve. I am suppose to wear it for a month since I had a slight increase in my arm measurement. Also will wear it for flying since I make several trips back and forth to Florida. Now to get use to wearing it.
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Following LMichele, thank you so much for sharing your experience! I had a UMX in left side in 2013 with a silicone implant put in place later in the year. I wasn't sure which surgery to use but the PS talked me into using this one brand of silicone implant because of quick recovery (my kids were 5 and 6 when I got my DX and the 6 year old was JUST dx with being on the autism spectrum) AND the PS also said this type of implant NEVER had a complication for ANY of the women who had received it. I decided in 2016 to do a nipple share, fat graft over the implant, and symmetry on the right. SO I figured I would go to Vinnie's for a tattoo last August (2017) NOW last month the implant is failing. It is hard, visibly lumpy, and the radiologist who did the ultrasound is concerned, and was asking me to "get the doctor to do something." Is taking me TWO months for the PS to get around to getting me into and looking at the scans. How long after your implants failed (ruptured?) did you have them taken out?
I am looking for other options for the failed implant on the left, and it helps me to know that you are doing well with the DIEP flap! Please keep me updated!
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Has anyone on here had DIEP in the Phoenix area? I am looking for a PS to do DIEP and would appreciate any recommendations.
Thankyou
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Rlsteadman, I am sorry to read you are dealing with lymphedema. Are you receiving physical therapy for it. I have been having PT on and off since my surgery. It has helped me tremendously. I hope things are getting better.
Mrslariz, the DIEP surgery is pretty serious stuff. You need a very skilled surgeon. When I started my research, it was not even on my list of considerations. I've had my share of complications but remain happy with my decision. Initially, I thought that traveling for surgery was a crazy thing. Now I think I understand that decision better. Good luck finding the right doctor for you. I might suggest posting to the other DIEP threads for suggestions.
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Just a quick update. I am 1 week past having my nipple tattooed. It was so quick and I didn’t feel anything other than a vibration. It looks good but she said I won’t see the final results for 2 months. Then I can come in if any adjustments need to be made.0 -
so glad the tattooing went well, RLSteadman! How’s the lymphedema? Hoping the sleeve is helping!
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Thank you Suburbs.
I am realizing more and more how big a surgery DIEP is. I went to a PS on Monday (Dr Prichard in Scottsdale), who stated he did DIEP. Had a consult and he seemed very knowledgeable. I went on the website today to look at before and after pics and realized the DIEP pics I saw were surgeries done by another PS. I called his office and was informed a Dr. Andres was the DIEP PS. I feel that Prichard was mis-respresenting himself as a DIEP expert PS. I found out he assists Dr. Andres. It was all very strange and really got me concerned about if some of the PS out there state they do DIEP and really don't. I am afraid it is $$$$$ driven. Very scary when it is such a big surgery. I don't know. I may just consider an implant at this point.
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mrslaariz, that does sound strange. But diep is done by teams at larger teaching hospitals and specialty practices by more than one surgeon. Everyone raves about NOLA. You might check out their website and give them a call. The more research you do, the better prepared you will be.
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mrslaariz, I wish I could offer you a better PS. I am in central Pennsylvania and loved my PS who just recently performed my DIEP Flap reconstruction.
I would not go to someone I am not comfortable with as this is a really technical surgery and can be amazing if done by someone with a lot of experience. My guy actually worked in New Orleans where his mentor and doctor he trained with was one of the first plastic surgeons to start the DIEP Flap when everyone else was doing the TRAM Flaps.
It is a team of surgeons and I was in a teaching hospital. The PS that is experienced basically runs the show and everyone follows his instructions. They need a good team because, in most cases, there were two PS surgeons working on my abdomen where the tissue was coming from to reconstruct with and the lead PS was then placing it in the breast and connecting the blood vessel. It is a long procedure as well which is why you need a team all working together.
For me DIEP Flap was the only consideration. I have heard things about implants that I just wasn't happy about. The DIEP Flap feels more like my own breast and when done correctly, it really almost matches my right side which is still my own breast. My touch up appt (which lots of people have) will actually only be adding a little bit of fat grafting to my original breast to make it a bit more full at the top to match the reconstructed breast. We are not doing any touch ups to the DIEP Flap breast as it came out really good. The only issue I had was some scarring below the flap because I think my oncology surgeon was pretty aggressive and one of my DCIS spots was so close to the outer skin which gave us only enough space for a 1 mm clearance. But, looks like the worst case scenario is that my skin is red but even that is fading.
Best of luck, hugs and support being sent your way.
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Hi, Everyone. I'm new to the group having just been diagnosed with DCIS, grade 1. I'm still debating treatment options and am leaning either toward doing nothing at all or double MX with or without reconstruction. Part of the issue is that I am 70 years old and do not want to go through the multiple diagnoses that many of you have. So I figure either I'll do nothing but watch it to see if it changes or just go whole hog and be done with it. My biggest concern is the effect of 12+ hours of anesthesia if I choose to try a DIEP reconstruction at the same time as the MX. Anyone here in or near my age group who have had experience with this? Thanks to all of you for sharing your experiences.
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mrslariz...there are always 2 surgeons in the OR, usually partners. I think there was just a miscommunication. Transfer to other doc if you feel better
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Dear jakilla,
Welcome to the community. We are sorry for your diagnosis and the decisions that come with breast cancer but we are glad that you reached out to our members. You may also want to review the topics in the thread for Those Over 60 with Breast Cancer. You may find others there who might be able to relate to your questions. Let us know how we can be of help as you journey around the community. The Mods
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mrslaariz- if you’re looking at traveling for the surgery, definitely check NOLA out. I traveled there for those docs to do my mx w/ immediate DIEP and would do it again in a heartbeat.
www.breastcenter.com
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