DIEP Flap Reconstruction 2016
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NOLA = Center for Restorative Breast Surgery in New Orleans, LA.
https://community.breastcancer.org/forum/44/topics/736412?page=905#idx_27144
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please add me to the upcoming surgery dates
CoolgrammieNC - Feb. 8- BMX w/diep -Charlotte, NC
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Sorry it took me a few days to update our surgery list! Am I missing anyone?
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I looked at NOLA, and even called them. They don't take insurance though, and that was a deal breaker for me.
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They do take insurance but maybe not yours. They have just recently become an in network provider for Aetna.
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My insurance is Blue Cross Blue Shield. I just couldn't justify spending the money on out of network and the logistics of going to NOLA. The results look stellar though!
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Rosiegirl, I had Cushing's disease and so I have a lot of abdominal fat. It did not preclude me from the diep. I was happy to lose a large flap that I could not lose after dropping some of the weight I had gained with the the disease, and while I am still a bit heavy above the incision, I am losing weight now after the surgery now that the fluids and all are finally coming off. Nothing is fast. I will have a second surgery to reduce the size of my breasts
I don't know if I had nerve reconstruction but I am starting to get feeling back already in my breasts and it has only been a month. In fact when the doctor was removing the Doppler monitor, I could feel it.
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financially, I had spent so much money with b/c b/s and then with United Heathcare for my mastectomys and reconstruction sx's and issues that I stopped my sx's in 2013 and thought what I ended up with was normal for women with mastectomys (deformed). It's sad that I thought I looked normal. In 2015, I started to research NOLA after a patient of mine showed me her boobs!! NOLA didn't take my insurance either, I paid just under $20k. It was the best money I have ever spent in my life!! I can't believe that I endured all the surgeries in 2013, I wish I would have went theito begin with. I'm very fortunate to be able to have done this
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Hello All -
For lack of a better term at the moment, it's been a "busy" two days. Yesterday I had my SLN Biopsy. We spent pretty much the whole day at the hospital. Most of the time was sitting around time. The most unpleasant part prior to the surgery was the injections for the local and the radioactive "dye" (not sure "dye" is the correct term cause it did not turn me blue). Getting "hooked" up before being put under was a little disconcerting too. I remember thinking "and this is how you feel and this is only a biopsy." Then it was lights out. I'm not really sure how long I was in the recovery room, but my overall impression was not long from the time I woke and the time I was in the car headed home. Pain was not my first thought as I woke, so overall that was good - though once I was asked and thought about it, I put myself at a 7 (mostly for the right side - left was more like a 4).
Ride home was a little interesting - my mother sent a text trying to get an update (my husband had sent an update to her cell vs. her iPad and she'd not seen it). Anyway, I dozed off three times trying to send her a short text. Each time I woke to discover I'd not completed the text, I was amazed at the drugs. Slept well through the night though, so that was good.
Today my right side is still the side that is generally more painful - which is a bit rough as I'm right handed. And, of course, I can't do much reaching. I'd originally planned to go back to work tomorrow, but I've reassessed and will be working from home tomorrow. Spent most of today dealing with the hospital to get my FML paperwork completed. All the staff on the day of the surgery were wonderful and seemed really on top of their game, but dealing with the office folks to get my FML paperwork completed correctly . . . well, let's just say I'm truly glad they aren't part of a surgical team!! That's about the nicest thing I can say.
I also got the results back for my genetics test - negative for all gene mutations! After all I've tried to absorb, I'm not sure exactly what that will/won't mean as far as treatment goes, but at least my conversation with my kids and sister will be a little bit different than if it had come back positive.
Guess that's about it other than I also re-affirmed that I'm really a wuss (which is one of the reasons I'd really like to get everything done in one shot if that's possible - as it'll mean less of these kinds of things that I'm about to describe). Tonight my husband changed the dressings for my incisions. The first side (my right side oddly enough) I was fine, BUT when he was working to remove the bandage on the left - I nearly passed out. Had to have him help me get to the cool floor. I never looked either time, so other than imagination - not sure what caused the issue. I already knew this about myself . .. it's part of what really has me so worried about all this. I never took a biology lab because I knew I'd pass out. I just can't imagine how I'm ever going to get through all these surgeries! I'm not going to be able to look at myself for months and months.
Btw, BigSister - I'm mostly through the one book (The Breast Reconstruction Guidebook by Kathy Steligo). It has been very helpful. I'm marked many points/references to refer back to once I've completed the book. Thanks bunches for that recommendation!
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jlstacy- It looks like you updated everyone that is new. If you'd like you can add that I'm from Boise, ID but I'm having surgery by Dr. Brian Reuben in Salt Lake City, UT.
I don't post much, but I do appreciate being able to read every post by those going through the same thing. Our stories are all slightly different, but the ride seems similar. Thank you!
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Agree, Tmgilbert. I saw so many women going to NOLA to fix what others and done, I figured why not go there in the first place.
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How long will you all be in the hospital? I will be in for 5-6 days, 3 of which will be in ICU.
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I just found out that I am scheduled for right mastectomy and bilateral DIEP surgery with Dr. Michael Reedijk and Dr. Stefan Hofer at Toronto General Hospital on April 7th 2016. I had left mastectomy January 2014 and finished radiation September 2014. After a stressful mammogram January 2015 (I had to go back for a second one and they found some calcification) I decided that it would be crazy for me to be waiting for the other shoe to drop with subsequent more surgery, chemo and radiation (I had high risk HER2+) and so decided on prophylactic right mastectomy with bilateral DIEP reconstruction at the same time. It feels like a very long wait and Dr. Hofer's assistant, Katherine said she can't guarantee that this date will stand due to other priorities and active cancer surgeries that could push me back again. I've been third in line since November but Dr. Hofer has been away a lot and will be away again so I have been waiting for surgery date for almost a year and now am not even sure if it will go through. I am feeling very frustrated and haven't been able to make any plans because of this. Can anyone give me an idea how long you've had to wait?
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Hi grateful99. I am scheduled for a bilatarel mastectomy with DIEP with reedijk and zhong feb 18. I met with reedijk beginning of dec and zhong mid dec for consults. original plan was lumpectomy but I would rather just have them gone. so I guess I am not waiting that long and hopefully I don't get pushed out. hopefully they will be able to push it up it someone cancels. waiting is the worst. hugs
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why is hofer away so much? what about a 2nd opinion re different P/S??
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Thanks Tanya. I called and it seems that I would have to wait at least until April for Dr. Zhong, so the assistant told me to stay with Dr. Hofer. It seems the problem for me is that many of the surgeons prefer to wait a year after radiation (I was told six months) which for me was September 2015, so I'll be waiting at least a further six months. It feels like forever.
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tmgilbert, I'm sorry that I was confusing. Now that I'm researching DIEP, and the projected surgery date would be sometime in mid-March, I'm only now seeing that so very many of the women here have gone to NOLA. I hadn't heard of it before last week when I started reading the 2015 and 2014 threads. I can imagine that if I bring up the idea right now, my husband would be less than thrilled at the idea given that we have qualified microsurgeons here in Charlotte.
I've just about decided and will probably have the final discussion with DH this weekend. I want the decision done and behind me. The more I read about the complications so many sisters here have had with implants, and the more women who seem to be very happy with their decision to go with DIEP, I'm feeling most at peace with this option. It'll be rough recovering with two young children, but it can't be helped.
I hadn't heard of sensory nerve reconstruction. I may have to ask about that before my surgery date. My biggest obstacle with BMX/DIEP was the loss of sensation.
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Well, jlstacey, it looks like your 2016 thread is up and running now! I'm sure you will all be a wonderful support system for each other.
It is amazing to find understanding, information, support, compassion and humour while going through such a thing as bc and reconstruction.
Continuing best wishes to you all, wherever you may be and wherever you choose to go for your care.
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Some days really suck!!! SLN Biopsy reveals cancer in 3 of 4 left lymph nodes extracted (think BS used the term micromets that I've seen on posts before). Now "upgraded" (is an upgrade I could've done without) to Stage IIA - again, not at all the news I wanted to get. Right lymph nodes negative.
BS ordering a bio-profile on left nodes (need to look that up) and apparently next step is to see a medical oncologist. I'm not sure I understand the point of Chemo before surgery when opting for a mastectomy over lumpectomy. At this point, my thought is just get it out now! That said, I'm not keen about hearing that they want to remove all lymph nodes on the left. That seems excessive . . . anyone got anything for me on that?
Tears again . . . and hubby out getting some comfort food. I'd really like my old life back; can't say I'm particularly fond of this new one.
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hugs pink.
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I'm so sorry, pink. 💗
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(((hugs))) to you Pink
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Pink I'm so sorry!! Hugs to you.dear sister!
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TanyaRocks30: Hi Tanya, wishing you all the best. I will be having a right MX with DIEP recon in February, in Vancouver. Perhaps your PS can let you know where to get a post surgery mastectomy bra. My PS keeps them on hand in her office and is going to provide me with one post surgery at cost. I am also going in a DD and emerging a C. I also have RA, and so far have been very lucky - no flare up. You're right about the laughter - it's saved me so far.
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TaniaRocks30, if you take part in the Breast Clinic Pre-op Teaching Class, which happens every Tuesday in the Survivorship Centre, 2nd floor of PMH from 10-12, you might get a coupon for a free mastectomy camisole (worth $60). It has pouches for drain pumps. You need to contact your surgeon's assistant to confirm attendance. Survivorship centre's phone number is: 416 946 4501 ext. 2363. There are two stores I know of that sell bras and other things for BC patients in Toronto - the wig shop at PMH can probably direct you or Google. Nursing bras also often open in the front.
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Pink: I am very sorry to hear your news. But since your diagnosis is similar to mine, I will tell you what I did. (The only real difference is your grade is 1 and mine was 2, so mine was faster growing). I am not sure if you will be advised to have chemo with Grade 1. My understanding is the higher the grade, the more effective the chemo. I know you want the cancer out but some people including me, have chemo first. The thinking is to get better surgical outcomes after shrinking the tumor. You should meet with the MO. But with a slow growing cancer, please don't rush to get surgery. Get a second opinion. I am not sure where you live and how much access you have to medical care. I know it sucks. But do your research and you will get through it. I had 2 lymph nodes removed and so far, I am doing fine. No signs of lymphedema at all.
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Jill/BigSister, I just want to say I'm so grateful for you being here. I've read the 2015 DIEP threads and am working my way through 2014, and it's been so good following your story and hearing your advice and experience. It definitely feels like a "big sister" and I find a lot of comfort having you on this thread.
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I am scheduled for February 2 for my bilateral mastectomy and DIEP flap reconstruction. I can't believe how fast this is happening (I was just diagnosed right before Christmas), but I'm ready to get this over with and get on with my life! I didn't realize until today that there would likely be a stage 2 and maybe 3 of the surgery, but I guess I'm glad that there is followup to help me have a good cosmetic outcome.
I'm wondering a few things--how many people just skip the nipple reconstruction? I already know I don't want nipple sparing (I have a large area of DCIS). And I have mixed feelings about nipple reconstruction or tattoos. I'm considering alternative tattoos as an option.
Also, what will I be able to wear in the hospital other than a hospital gown? I'm guessing regular pajamas our out due to abdominal incision. Should I just bring a robe to wear over my hospital gown?
And I'm a little overwhelmed reading the list of things to bring to the hospital. Does anyone already have a list of essentials that might be a little shorter?
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Hi Ducky and welcome!
I was in the hospital for 6 days. I wore a hospital gown the entire time. They provide you with everything you need including for drain management etc. I would suggest a robe for when you start walking in the hall. I had brought all sorts of things with me that I never touched. When you go home, you need comfortable clothes, especially soft easy sweatpants or pajama bottoms - because your abdomen will be swollen andfeel strange and you won't want to wear anything the least bit tight - and a shirt that buttons in front.
Others may chime in with more..
I'm leaning toward 3D tattooing.
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I am thinking of skipping the nipple reconstruction. I just don't want to do the tattoo or other.I just don't think it will make a difference.
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