DIEP Flap Reconstruction 2016
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Trvler:
Frustrated! So, I sent a list of questions today to learn about the differences in the 4 Breast Reconstructions plastic surgeons that are on staff at my facility. One of the questions I asked was:
How many DIEP Flap surgeries has each of plastic surgeons completed in the last year/since their start at your facility/in their careers?
The answer I got back was
They perform one surgery per week so 52 per year, they have been in practice on their own for 8 years not including their residencies.
This from a nurse who works for the PS at the Breast Center. I'm afraid my return note was not so nice. I asked if she was trying to tell me that they have cookie cutter surgeons and that I'm not interested in being filleted by such a surgeon, but if they have surgeons that have differences and I can learn about those differences, then I have no problem with going with a surgeon that I feel best meets my needs.
Is there a way to truly learn about the surgeons. I seem to always run into a dead end whenever I try to actually learn about them. Every books says to ask all these different questions, yet I feel a huge road block anytime I try to do so. I don't know if they are trying to cover their butts/the facility, but I can NEVER seem to get a straight answer like any book suggests that I should be able to. I know it's a BIG facility . . . and renowned, but that doesn't mean that EVERY doctor/surgeon there is the same. How do I truly, truly find out about these surgeons?
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Pink- both trvler and I went to the same breast center in NOLA. after having one year of multiple surgeries with implants, failures, tissue expanders and again failed implants, I wanted the best of the best. I started researching. And I found NOLA. This is what they do. DIEP DIEP DIEP.!!!! Stage 1 and stage 2 sometimes stage 3 (nipples). I have pictures of my breasts before my original mastectomys and then at each stage of surgery I went through. In 2013 I looked in the mirror and thought this isnt normal. I want to look normal! After my DIEP stage 1, I stood in the mirror and cried because I finally looked normal! I will scream from the rooftops to anyone who will listen. If you can do the DIEP then do it but do it from a facility that does hundreds (+) a year. Don't settle!
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Pink: Are you saying you got that from the BS in NOLA? I had trouble getting answers when I asked those questions at some facilities. It was during one of those conversations I asked some questions I was told to ask on from advice from the ladies on here and I didn't like the answer I got so I went to NOLA. When I first called NOLA, I kind of felt like they wanted to put me with their new doctors because they aren't as well known. I made it clear I wasn't traveling to NOLA unless I saw Dr. Sullivan or Dr. Dellacroce. They scheduled me with Dr. Sullivan and I ended up with Dr. D as my second surgeon. Just to let you know, many facilities use one PS and one PA and NOLA uses TWO PS's which is one reason they get you out much faster than other places.
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Sorry for my bad writing. I am hurrying. lol
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trvler-I don't believe Pink was talking about NOLA, no way she could have been. I traveled from Florida to NOLA and I Saw Dr Wise. I was super nervous because he'd only been with the group for 2 1/2 years but I've got to tell you, at my pre-op for stage 1, I completely clicked with him. He answered everything before I asked. He showed me the issues and how we were going to correct them. He was FANTABULOUS!!!! I've heard the same with Sullivan and Delacrose and I've actually seen there work but I knew I was in great hands and for their reputation I'm 100% that they only would recruit the best. I was treated like royalty the whole time I was there.
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Hello all,
NotAgain,
I had my bi-lateral mastectomy with DIEP flap immediate reconstruction on 12/2/15. I had the exact same pain experience. Initially, almost all of my pain was in my abdomen (and lower back from hunching over) and I remember making comments like "I wish my belly felt like my breasts!" But then around 2 weeks or so everything changed, and the pain really started in the breasts. I called the nurses a few times that week, I was so concerned. They said that it was normal for the numbness to dissipate. I also started having what they called "hypersensitivity" to temperature. If my breasts got cold, where I was shivering, the pain was unbearable. This would happen also when I drank anything even cool. My husband started bringing me only warm water, and the water that sat on my nightstand would be too cold to drink in the middle of the night! They told me it's not very common, but they'd heard of it. I'm still not able to drink really cold drinks without some sort of pain, but it's becoming more discomfort than pain.
On the flip side, my physical therapist at 2 weeks was shocked at how well I was moving and at my flexibility, which made me feel great! I started driving at 2 1/2 weeks post op, just quick little errands, but it felt really good to get that freedom back. I never knew what each day was going to bring in the way of pain for the first month, but I'm approaching 5 weeks out, and feeling just a general soreness most of the time. I only have my lifting restriction left to get through and I'll be able to get back to work fully.
I'm so glad that I found this forum as it's nice to hear how others are doing after a similar experience. I wish you all the best!
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Hi cmommy,
We are really close on procedures and timing too. I see my PS tomorrow first time post op and over the last day or two have noticed bruising and some redness around my abdominal scar. Thinking it us coming fry my walking more or from the drains coming out? Have any of you experienced anything similar. Still running low fever 99.9 ish. Other than that feel pretty good but sill taking pain meds. Tired by afternoon/early evening.
I know my new breasts are going to work out nicely
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My incision is hip-to-hip. I think everyone gets that long of an incision? In any case, I don't think a few more inches there would make a difference. It is a long scar! But I am getting used to it.
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Lcmmommy-
Welcome to BCO, and thank you for sharing your story! We hope you find the support you need here!
The Mods
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lcmmommy, I am 2 years out of my DMX, and still have issues with cold drinks and pain when i get cold, though it has gotten to a point where it is bearable. I think the nerves are just so on alert after all that trauma.
NotAgain201…, I would call your dr asap if you are running a fever with other signs of possible infection. It may be nothing, but better safe than sorry.
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NotAgain,I agree to talk to your PS right away. 99.9 when you are taking pain meds that normally block a fever is disconcerting.
If yourappointment is today, great. But if it isn't until tomorrow, call.
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Hi Pink,
I am so sorry that you are frustrated. It is a frustrating time because it is your body and your quality of life that is at stake here.
Unfortunately, there is no cut and dried way to find a team that will suit you. We are all very different and thus we all have different preferences. It is like finding a mate. Things might look great on paper, but when you meet the person, you realize the fit is right or it is not. Unfortunately, you don't have a ton of time but at least the pool is limited, which helps a bit.
I don't think the girl in the office could give you much of a different answer. She doesn't see the docs as a patient, so in her mind, they are all the same. Sure, one might be a practical joker and the other quiet in the office, but that isn't going to help you much. Since they are all in practice together, it is likely that they all have the same philosophy and follow the same procedures.
The fact that they have been at this for 8 years doing a DIEP a week is a great sign. It means that they are very experienced in what they do. Since they do one DIEP a week, it is a procedure they know well, another good sign.
The only way that you can decide who is right for you is to meet with the PS yourself. One question that helped me is I explained that I was terrified, so I had to ask this question: why should I let you work on me?
When I asked that of the DIEP surgeon that I met, he gave me his educational history and how he fell in love with microsurgery and the DIEP procedure. He excitedly showed me why he follows the method that he does. He admitted to being a bit of a DIEP geek. I felt so comfortable with him and saw that he cared about his patients greatly because he was a skilled surgeon and he didn't want anyone messing up his work. I was sold. If I hadn't been, I would have asked to see another PS.
You said that you and your husband decided that you wanted to go with the facility that you are working with. Rest in that. When you get emails from the office, read them to your husband and talk about them before you respond. He can look at them more rationally.
That is why after my sepsis I started taking my husband with me to every appointment. Part of it was to protect the doctor--I was so upset about all that had happened that I often flew off the handle or burst into tears. Having my husband there helped me feel protected, and he was there to be my champion if I needed it. It also gave me someone to talk to on the way home and afterwards to discuss what we had learned and decide what to do next.
Since you have chosen this center, go see the docs. See the breast surgeon that will do the mastectomy. Discuss options. Ask him about the different PSs and which he prefers. If you click with him, stick with him. If you don't, ask to see a partner. Do the same with the PSs and the MO, etc.
Have your husband attend all these appointments with you so that you can discuss them at length and choose a team that best suits you both.
I hope this helps. I hope I am not coming across as a "bold piece" (as my old charge nurse used to call me, LOL), but rather as a friend who has been there, done that and is coming alongside to encourage.
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Hi Pink
I have been reading back through your concerns and they all are very real. One thing to keep in mind is that if you are communicating via email you will get more generic answers because the facility is covering themselves from law suits. As you know you have to have total and complete confidence in your surgical team. This surgery needs to be done in gifted hands. 1 DIEP a week is a good amount depending on the size of the facility and city. Mine was done in San Antonio at PRMA but it's the 7th largest city in America and each surgeon does 2-3 week but they do that because they are able to handle that volume. Once you decide you feel so much better. I'm sorry you haven't been getting the answers to your questions. Keep pressing forward. We are here for you.
Sending you gentle hugs & prayers as you make your decision.
G
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PINK- I was on vacation last week. I typed out a long response to you on my phone and lost it! Argh!
You CAN have an SNB done prior to your lumpectomy/MX/BMX. It really depends on the protocol of your facility. I went to the #1 hospital in the state of MIchigan- Beaumont, who are also #2 for cancer. They said that doing SNB in advance is an outdated protocol because lymph node involvement is not the only factor in determining if you will need radiation. I also looked at University of Michigan because a plastic surgeon there came highly recommended. They are the #2 hospital in Michigan and #1 for cancer. Their protocol is to do SNB in advance for those who they decide are eligible for immediate reconstruction.
That being said, I saw several plastic surgeons trying to make my decision on what to go with. Apart from Dr. Momoh at U of M, they all advised AGAINST doing immediate reconstruction with DIEP flap. If you have radiation, there is a good chance it will damage your skin. If you do immediate recon with DIEP, you have nothing to fall back on for recon. For instance, if you do have rx and your skin is damaged, they will remove skin from your abdomen and use that in your recon. If you have already had DIEP, where is that skin going to come from?
I didn't feel comfortable with the SNB in advance. I just felt like something could be missed. Cancer might still be present even with a BMX, or they might find something that means I would need radiation after DIEP. I did not need rads, and had a BMX with TE. I had nipple sparing, skin sparing and I'm happy. The TE aren't fun, but they certainly aren't the worst thing ever. I have had no infections. Another reason I didn't go with U of M is their rate of infection after surgery.
The thought of having one surgery instead of two and not having to go through the emotional turmoil of seeing a flat chest was very tempting. But I was only flat for a couple weeks before fills and then I started getting shape. The fills were uncomfortable for a day or so, but a muscle relaxer helped. I have a decent pain tolerance level, but nothing spectacular.
Don't be afraid to go to several PS to get a feel for their work and an understanding of what to expect. Find out the rates of infection with TE. That's your main concern right?
Additionally, I went to a multi-discplinary clinic after my dx. I met with the breast surgeon, medical onc., radiation onc., nurse navigator and social worker. It really got the ball rolling. They consult and come up with a plan as a team. You get a lot of information and you feel like you have a grasp on what is going to happen. My meeting was on a Friday, and I was getting my port in the following Monday. I had a slew of additional tests because they thought they may have found some things in my lymph nodes and the other breast. I got answers very quickly and new exactly what was coming. You might want to see if that is available near you at a good hospital.
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I had a lot of concerns about doing rads after surgery but Dr. Sullivan didn't even seem concerned at all. I do think Dr. D has said he doesn't like doing DIEP before rads.
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Surgery got pushed up to the 25th of THIS month! Nervous...
Frantically looks for the, "What to buy to prepare thread".....
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Hello Everyone, I am new here and want to thank you for your kind sharing. I was first diagnosed in 2010 and had a right breast lumpectomy. Then last February 2015, I felt a pretty big (5.5cm) lump and knew immediately that it was back, bigger and badder. I had BMX with immediate DIEP reconstruction in April 2015 at NYUMC (a great hospital). I chose the surgery because I was not interested in having foreign objects (implants) in my body. And though I did not have a lot of belly fat to work with (yoga life), my PS said I could do it. It was a long surgery, skin saving but not nipple sparing. The abdominal scar is hip to hip. My breast mounds (as they have been called) have the same lopsided circle scars that are common. I meet with the PS next week to determine phase two, fatty injections and nipples, and work on the abdominal scar.
Initially all was fine, but my abdominal incision needed a second stitching two weeks later, and some of the tissue at the edges went necrotic. Pretty scary, but that was cleaned up in an office visit. I took a lot of pain pills during those weeks, I barely remember.
It took me months to really start healing because I started chemo five weeks after surgery. I am impressed to read that healing was faster for some. Chemotherapy stops your body healing so basically I was at a standstill until November, when I finished eight weeks AC after 12 weeks Taxol. I thought I would never heal, and had quite given up thinking I would, I even thought the flat chest and line would have been a better life, but in the last six weeks I have healed more than in the whole eight months since surgery. Which is my point...the healing from DIEP is no picnic, especially if chemo is involved. My PS tried to warn me, but even he said I should be better in three months, which was not the case. I still have very little abdominal strength, have to pull/push myself out of bed, and tightness all the time in my new breasts. Very sore under arms still, and cannot tolerate any bra. But like I said, it's all moving much more quickly now that chemo is done. And hopefully I will see the sticky side of a yoga mat soon.
I will be 59 next month, and while I don't feel ancient, I don't know how much I need nipples twisted out of my skin, or tattoos. I just don't want any unnecessary pain after a very long year. I am thinking of just some fatty work to round out the breasts and fill in the concave nipple area. Can I hear from some who have made it to this part of the journey? I really need some info to guide the discussion with my PS next week. He will of course want to do all, but this will be about what I want, which I don't know yet! Thanks so much.
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Welcome Kellygirl!? I hope someone can help you on here. I don't have my DIEP until next month. Have you posted in the 2015 thread? I'm sure there are ladies there that have had stages 2 and 3 done already.
MyaJames, I'm sort of jealous! I'm ready to get this done now! However, I'm still in physical therapy so it's best to wait. Check the 2015 thread for good info
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Thank you for the welcome everyone,
NotAgain, I'm so glad that you think your breasts are going to work out nicely. Please let us know how your PS appt goes and about the fever.
JWoo, I'm glad to know someone else experiences this strange cold issue, however, I hope it goes away for both of us! I'm sorry that you are still having issues with it. I know my nerves are working hard, that's for sure. I can feel them working all of the time, and the skin is even hot. It feels sometimes like I have a bad sunburn all across my chest! I hope that this all settles down soon.
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KellyGirl,
My mom had the Tram flap procedure, (very similar to the DIEP flap) about 20 years ago (at age 49) and she decided to not get the nipples added later. She is VERY happy with her decision: she didn't want any more pain/procedures, and she loves being able to go bra-less if she feels like it because nothing will ever show through. I'm only 1 month out from my DIEP procedure, and am 46, and at this point I feel like I will go back and get them, but I can see my mom's points and understand why she chose not to go back. I hope that helps a little.
Good luck in your decision!
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Kellygirl, you are certainly in the pilot seat for what else is done.
Express your concerns to your PS and ask him to give you an idea what each piece will cost you in pain, time to heal, compression, etc.
I have read through most of the 2014 thread, which is fantastic. The ladies there of all ages seemed to appreciate getting nipples after all.
Out of all that they can do in stage 2, the nipples are the easiest. Just be sure they won't take a skin graft from elsewhere to get it. Tattoos just finish it off. You won't feel it, so that isn't an issue.
Fat grafting is what you want to understand. It seems to involve bruising at the donor sight and the need for compression. So ask what that will entail on the other side.
The women on the 2014 forum seemed to bounce back from the far grafting pretty quickly, but they didn't like the compression, esp during the hot summer months. HTH
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Good evening!
Just got scheduled for double mastectomy with DIEP flap reconstruction.
Im mostly scared of the recovery. I don't have much help at home and am worried about getting around the house and taking care of myself. Any tips and/or suggestions would be greatly appreciated! Would love to know more about recovery time and what it's like. Thanks you ladies!!
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Trvler:
Sorry - so much to do that I've not been back on since last post. No, I'm not saying I heard that at NOLA. While I've heard of a lot of bigger facilities - MD Anderson, Sloan Kettering, Mayo, and others to include my own - I've not really heard of NOLA before. And, after speaking with my BS today, I've come to believe that it's the nurse for the PS that is the problem.
When I visited this nurse to see pictures (as directed by the PS), one of the comments she made was during this meeting is that my facility did/does not perform same day reconstructions. Now that was not the impression I gotten from the PS when I spoke to her. Anyway, when I spoke to my BS about some other things, I also asked if the nurse was correct in that same day surgeries were/are not performed. My BS seemed a little surprised that I was told that and informed me that that was incorrect. That they do indeed perform same day reconstructions. Since the nurse that told me that was/is the person that is answering the questions I sent - I believe she is the issue and not the PS so much. So, I think if I can figure out a way around this particular nurse - perhaps I'll be able to find out the answers to my questions.
However, this info about PS problem aside - I did have a good conversation with my BS and I'm feeling a bit more positive about steps moving forward!!
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jlstacey:
So, I spoke to my BS today about SNB prior to mastectomy/reconstruction. I asked if it was a definitive test for lymph node involvement and, if that came back negative, if there was anything else with a pathology report at the time of mastectomy that could indicate the need for radiation. He said it was definitive - in that a negative SNB would mean a recommendation of no radiation (and I believe I also read on this general website that the rule with women who had SNB negative nodes was not to recommend radiation).
He did indicate, however, that the OncoDX report could indicate unknown factors about the tumor that could require me to have Chemo (which is currently not in the plans for me unless something comes back on that OncoDX report). I then asked if any form of aggressive Chemo treatment could have as bad an effect on DIEP as radiation could have on the tissue. His answer again was in the negative. So, currently I am opting to have the SNB prior to other surgery. If the report comes back negative, it gives me more confidence to move forward. If it's positive . . . well, then I know the worst in advance. If it's the worst - it's nice to hear that you didn't find the TEs as annoying as some others.
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Hi All
The PS did prescribe an antibiotic but he doesn't think I have an infection. I am still quite miserable. I was not expecting this three weeks out. My guess is it is one of my ab drains they took out, the right side is red and blue and tight as a drum above and below the incision and uncomfortable. Somehow I am not making myself clear enough.
I see my BS and MO tomorrow. I know my BS will point me in the right direction.
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NotAgain, I am so sorry that you are so miserable. Glad you are going to see your BS and MO tomorrow. They should indeed get you all figured out
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I had a really good morning, no temp, saw BS and MO both though the incision looks angry. Got home and whammo 101.1 highest yet. Makes me feel like I am freezing, all of my skin hurts and jabbing pain in ab. Called the on call doc. Will start in in the morning with PS's nurse. Something is not right! Sorry to be so whiny. I know this too shall pass!! My oncotype score was 13. Was so relieved to have that low number!!
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Hey Ladies,
I was just sent a booklet (from the PS office) on everything to expect while in the hospital following DIEP surgery. It's pretty informative, and even includes a checklist of things to bring with you to the hospital. I'm sure every hospital is different, and things may vary, but it should give you a general idea.
Hope you find it helpful: https://drive.google.com/file/d/0B2QXJg-0p23uX0g4M...
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NotAgain -
Hope you are feeling better soon!! Considering you've been having a fever and they thought the incision looked angry, they still didn't give you anything? That sounds really strange. I'd have thought an angry incision would mean an infection possibility and I'd have thought they'd have given you something . . . or if you're already taking antibiotics still, then maybe something different. Some meds don't work on some people. Again, hoping you're feeling better soon.
I go for a SNB on Tuesday. I'm really glad to be having this to know about potential nodal involvement before my main surgery, but also a bit nervous. I'm trying to stay positive as my BS says most Stage 1 patients with my markers don't have nodal involvement, but had a lot of different breast pain after I changed out of bra last night. Supposedly there can be different pains after biopsies (for as long as 6 months later), but it's still worrying.
Take care! Let us know what you learn.
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thanks Pink. I've been on antibiotics since Tuesday night. Glad to hear your plan is coming together. It still makes you nervous but you feel better when you have a plan. I also understand feeling every pain and you can't help but wonder!!
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