DIEP 2011

Norma June-- Glad you are satisfied with your reconstruction with "PS#3." I need a PS#3 to replace my PS (what happened to your PS#1?). I had rads, too, and am starting to have tissue contraction around my TE, along with muscle knots and cording in my armpit. I was looking forward to getting the TE out! Why did you wait 2+ years for reconstruction?

Kay-- I have been waiting for this surgery all summer; the anxiety is dreadful. I can't believe I don't even have a date now. Where did you have surgery?

Laura-- Thanks for all the details about your NOLA experience! Good to know that the surgery and recovery went so smoothly for you, and that you are back to work and feeling great! Yes DIA is huge, can't believe you walked there so soon post op. You say you only had 4 drains?? I that the standard number? 

Betsy-- Thanks again for all the NOLA info; good to know about Hope Lodge. Flying 3 X with drains-- you deserve a medal! It's hard to believe those drains weren't terribly uncomfortable while you were flying, but I will take your word for it. Did you have to explain them to the TSA?? Who removed them once you got back?

Libby--Yikes-- 20 hours under anesthesia? No nausea? I want your anesthesiologist for my DIEP! Your surgeons were clearly committed to a successful outcome, too, so I would say your experience was exceptional all around. Hope it continues to go well for you.

C8ndgr1--I hate to read another story about a 10+ hour surgery, but at least yours was without problems. Where did you have your surgery? I was supposed to have mine at Huntington Hospital in Pasadena where my PS has supposedly done 200+ DIEP procedures with 100% success. He and his assisting surgeon obviously work well together, so why can't they coordinate their insurance contracts? Best of luck with your surgery Monday; I will be thinking of you.

That really was out of left field to tell you about the out of network fees like that.  I know docs are not really that good at insurance, but you'd think their office staff would be.

I had my surgery at UPenn with Dr. Tchou and Dr. Wu.  Going back to see Dr. Wu for the first time on Monday.  Very interested to see what she says about everything.  I think I'm doing really well, so I think she'll be very pleased with everything.  Meeting sohardbnme for lunch before.  (She has her post op appointment the same day, right after me!  How lucky for me.)

Hang in there KatheW, it will all work out.

 Kathe... In response to;

Thanks again for all the NOLA info; good to know about Hope Lodge. Flying 3 X with drains-- you deserve a medal! It's hard to believe those drains weren't terribly uncomfortable while you were flying, but I will take your word for it. Did you have to explain them to the TSA?? Who removed them once you got back?

 About flying and the drains... I have a pouch and when they (TSA) asked me to remove my purse, I said they were medical drains... it was no problem at all... they understood and I went through the xray machine instead of the metal detector... and because I had hip flaps first, I have had hip drains for 7 weeks now... they are a bother, sometimes sore, but not painful. And most of my other drains have been removed by the doctors in NOLA... the only one that came out at home was a breast drain after the first surgery and my husband pulled it... it is painless... just slides out. When its time for the hip drains to go, I plan to pull them myself.

Thanks everyone so much for the "recovery trajectory" stories, such as mine about walking endurance. You all remember being on this side wondering "how soon will I be able to...?" and you know how much we appreciate those personal accounts. Everyone is different, but with many voices, we can grasp a range of possible outcomes and visualize ourselves over there. Very best continued recovery to those healing and peace of mind to my sisters still waiting on this side.

Kathy--I have had to make many health decisions this year, but most of them--chemo, surgery, rads-- were easy. Deciding to go for DIEP reconstruction was not easy. My surgeons recommended against an implant because of radiation scarring, so it was DIEP or nothing. When I was sick/tired from MX, chemo and rads, my thinking was "no reconstruction, why do that to myself?" Now I am recovered from treatment, feel good, and my thinking is: "I can recover from that, too, so why not?" But it did take me 7 months to get to the point where I could think that way. My only question now is where can I do this where it will not cost me $4600!

You mention the element of surprise as a strategy to get me to pay. Funny --my first reaction, after panic, was that we would just pay for it somehow. Then my brain took over, I thought of NOLA, and I posted my situation on this board. Wow! Everyone's response here has been so helpful!

I also considered that the office staff waited to tell me because they knew it would be hard for me to undo the presurgery planning. But then I reaized that they do not know that I froze a lot of food, rented a recliner, or booked flights for my parents to fly here from Wisconsin to help out. The food will keep, and I cancelled the recliner. I haven't told my parents yet. I will have to put on my big girl pants for that call!

Kay-- thanks for the philly info. I am keeping my mind and options open today. Enjoy your lunch and let us know what your doc says.

Betsy--Did you have a choice about the airport xray machine? I suppose they have to make sure you aren't packing explosives, but I wish they would figure out a better way. Do you just have the hip drains now? 7 weeks is a long time to have drains. Are you still swollen from the hip flap surgery?

Kathe.. The airport security did not offer another option and I really was fine with it... better than a pat down for sure... and yes, 7 weeks is a long time, but because I had three surgeries (two with the hip drains already in) the drians picked up output... I'd say the extra surgeries added about 2 weeks to my drains... But the hip drains are from the hip flap surgery... I was able to get rid of all other drains from my DIEP before leaving New Orleans.  And my hips(butt) healed quickly, painlessly and beautifully... so no swelling there... My abs (2.5 weeks post op) are also good... no swelling that I can see... Both breasts are still swollen, but not nearly as bad, and I think some of it may be MX related... My breasts, especially my right breast, have had a lot of trauma in the past few weeks... The right breast had a MX, then a hip flap but the skin was compromised, incision opened, then had a wound surgery and vac for 5 days and then was rebuilt with DIEP flap... my poor right breast And that is my non cancer breast... but they did save the nipple.

I have a PS at Vanderbilt in Nashville that I really like.  Don't know where in GA you are but that might be a possibility for you.  I am currently scheduled for a prophylactic MX and double DIEP on October 13.

Need bra suggestions!!!!



I am 8 weeks out of DIEP and feeling great. Got my energy back and feeling fairly 'normal'. However, my breasts are uneven. My radiated side sits higher and smaller than the other side. That side was an immediate skin sparing mx. My PS says he will go back and even them out by reducing the bigger breast at about 3-4 months post surgery. So in the meantime, finding clothes that camouflage this is a pain. I've decided maybe I should get a comfy bra.

Any suggestions? I have a friend who had reconstruction - lat flap and she bought the Genie bra. Anyone tried this?

Hey ladies, just checking in.  I have been ridiculously busy and my body is telling me I need to slow down.  I am now 5 weeks post-op and we took a motorcycle ride this weekend.  I wasn't sure I could do it but everything was fine.  This afternoon the bay was slick with very little chop so we took a boat ride.  I wore a compression bra and a tight camisole with spandex to keep my noobs nice and tight.  I didn't want any bouncing around!

Unfortunately, NOLA didn't take my insurance and they quoted me an out of pocket expense of $24,600.  I nearly had a heart attack and died!!  I had to find someone in network for me and I went to the Charleston Reconstruction Center in Charleston, SC.   Dr. Kline and Craigie did the DIEP part and Dr. Beatty did the mastectomy.  I am so happy with the results.  I would highly recommend them.  The doctors, their staff, nurses in the hospital, etc. are all specially trained for DIEP patients.  I had a really wonderful experience there.

Shellyann, are you still experiencing swelling?  I am so swollen between my breasts and my abdomen that I can't zip any pants I was wearing before surgery.  I am still wearing dresses every day.  YUCK!!

I love this thread.  I can't imagine this journey without you!

Susan

Shellyann: I got two Wacoal bras from Nordstroms using a prescription from my breast surgeon; they are soft and stretchy, no underwire but have great support and did a great job of giving me a symmetrical look. I worked with one of their special fitters experienced with post mx. Patterned, loose fitting tops work great for camouflage, I wore those when my TE made my boob look like a huge doorknob and also when I had all my drains.

Susan; slow down girl! you are making me look bad! But seriously, I'm glad you are getting some fun in with your DH!

Kathy

your insurance should cover two bras per year every year after BC ; it cut the cost of my nordy's bras in half; this year I'm saving my bra prescription till after everything has settled and I can wear any kind of bra I want; my insurance will probably be paying 100% by that time. My Wacoals fit perfectly and are very comfortable; I'm a 36DD. I like working with a fitter . . I hate trying on bras! Having someone measure me and bring me bras was great. I haven't looked into the alternatives. Someone mentioned another good bra earlier in the thread . . .you can use the search function and likely find all kinds of suggestions. I think there is an inexpensive Warners that has been recommended a few times.

Betsy- do you have access to TimTam's picture site?  My story is there. 

I had a near-failure on one side during my SGAP stage 1.  My doc worked really hard to save it, and it seemed like it had blood flow so we didn't redo it at that time.  It was really firm after that (not hard like a rock, just firm), got slightly softer over time so we kept watching it, but still mostly firm and round like an implant.  We went ahead with 2 stage 2 surgeries, but after the second one--which was a year after the original surgery--where I had nipples created the nipple on the bad side never healed.  The flap swelled up and then started draining liquefied necrosis through the nipple incision. After a couple months it became clear it was shrinking and wasn't going to stop draining.  It was still draining 7 months later when I had the replacement.  What they took out last month was a third of the original size, and it was the tissue that was closest to my chest wall (i.e., closest to the blood supply).

I think my situation is really unusual, I've never heard of a failure like that so far out (neither has my doc).  It's possible other people have had necrosis that liquefied and got absorbed, and wasn't as large a volume of tissue.  I think that happens, especially with hip and GAP flaps.  I've been hesitant to talk too much about what happened because I don't want people to think it will happen to them.  We have enough to worry about in this process   Necrosis happens, the docs deal with it in various ways depending on the quantity.  My doc avoided doing lipo on my stomach because she had a feeling she'd need that tissue for a replacement.  

Almost 4 weeks out, so far so good.  There's a firm area but it's shrinking so I think it's probably a hematoma or something like that. Trying not to worry about it.  It's been a long process, I hate that I was one of the unlucky ones, hate that I had to give up even more of my body, but very grateful I have a surgeon who only wants the best for me and never considered walking away from the challenge.  Looking forward to being done.

Brenda... I can imagine it was not fun... I had a similar problem, just in a shorter period of time, and smaller scale... During my mastectomy, the BS got a little too close to the skin and I had skin necrosis (or damaged skin with blisters and very raw)... it may have healed eventually; they had me putting A&D ointment on it and it was improving, but all that moisture prevented the incision below it to heal (as one person told me (Dr Trahan or laura... can't remember), and so at the two week post surgery mark, the incision started leaking fluid... the leaking increased and the incision got bigger, until my whole breast shifted and was liquifying (or so it seemed)... By the 3.5 post surgery point, the hole in my breast was the size of an egg and leaking quite a bit... I had been sending photos every other day to Laura (Dr D's PA), and once the hole was that large, they flew me back to NOLA... I then had a wound surgery to remove the dead stuff and they did the DIEP the following week to rebuild it, removing the bad skin as well. I feel unfortunate that it happened to me, but fortunate that they hadn't used my belly in the first place (which was the initial plan (to use hips and abs))...  Dr Dellacroce did everything he could to make it all right. Shi* happens and we have to deal with it... Of course, we never plan on complications, but it happens... My left hip breast is still firm and swollen, but improving and doesn't have any nodules, just firm... the right ab breast is also firm and swollen (more than the left), but where the ab skin is, its soft and squishy... I hope it all works out since I have run out of donor sites. I am now 3 (right) and 7.5 (left) weeks post op and as long as I see improvement day by day, that's all I can ask for.

Re: caffeine and chocolate, at my second post-op (2 weeks post-surgery), my PS said I could resume caffeine and chocolate. Much to my horror, I found that I can't even finish one cup of coffee now because it tastes funny and the caffeine gives me the jitters. Ditto a cup of tea! DANG! Chocolate doesn't seem to be a problem, though....