Diep 2012
Comments
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Wishing everyone the best with their upcoming surgeries. Think positive! I am now 18 months post BMX/DIEP and really couldn't be more pleased. For you newbies, I had my surgery in the beg of Dec 2010 and I was downhill skiing in CO the 2nd week of Jan 2011. I have since lost 20 lbs and 2 pant sizes. I had my stage 2 ( fat grafting, lipo and nipples) done this past Nov. so I just have nipple tattoos left. After surgery pain was manageable with meds. I was off narcotics before I left the hospital. I found that Valium was indispensable for back spasms I had from being in the hospital bed too long. My advice is to get up and walk the halls as soon as you can and do it several times a day while you are in the hospital. When you get out keep up the walking. I was in NYC and went out and walked around the block at least twice a day even in the rain. Drink, drink, drink lots of water to flush out the anesthesia drugs from your system. You will be swollen for quite awhile so don't fret. I love my new breasts and they really helped me with my recovery. They look real, feel real and I don't feel so much like a cancer patient. Thanks Dr. Levine.
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Robin... Yes, you should be off Tamoxifen for surgery, so ask that question.
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Well, to add add to the joy of awaiting my UMX/DIEP on Tuesday, the BS nurse left a message that they didn't have my EKG, labs or dr. evaluation. I did the labs at the same hospital, and at my primary for the EKG and her physical. Primary told nurse they hadn't seen me since my initial visit in Jan., even though I've been back for a UTI and a finger cut, plus the EKG. Could they have lost my EKG? And of course I can't find a receipt for it. Did I dream the whole thing, even writing an email to a friend I had taken it?
Well, I have the weekend to obsess. Wish this was over.
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Chris - your insurance company should have a claim for the cost of your EKG...you should be able to call them or check online for benefits paid out.
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Update from surgery on 4/13......surgery was a success according to the ps. I haveone small area of necrosis. Pain isnt too badin chest more so on the leftside where she had to take out a little bit of cartiledge to attach blood supply. I still have a good amount of pain in abdoman. I do try to stand straight when i walk but a bloating feeling below the incision and it sticks out the most there than anywhere else on my abdoman. Still sleeping on recliner couch and not sleeping well. Might try one night in bed. Just afraid I wont be able to get out. I also have 4 numb finger tips on my left hand. Thinking I have a pinched nerve in my elbow. Still have one drain left and not sure if it will ever slow down enough to get it out. To me they are the worst and quite painful at times. Im concerned that i might be getting a blood clot in my leg which i will talk to them about on tues. All in all things went good. I have been in a funk the last few days. Down to only taking oxy at night which is good. Wishingifelt better that is all. It has just been 2 weeks but i guess since i bounced back so quickly from the bmx i didnt plan on it taking so long.
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Hoppy... Your post just made me remember that I had numbness too.. I think some of it is the position my arm was in at night, resting up on a pillow.. it did finally go away, and was only after I had been in bed.
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Totally bummed out. Doc's office just called and pushed back my surgery another week. Scheduling conflict. WAhhhh!!
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cmbear - So sorry!! I know that has to be so frustrating. One more week to think about it....aghhh! Hang in there and soon you'll be on the other side and can share your story for the rest of us that follow you.
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Ok. I have a question. Well maybe 2. Or actually 3.
I'm exactly 6 weeks post-op. At the end of last week, I decided I'd wear a cami-type bra. I still have a couple of hard spots (which I believe are fluid) at the bottoms of both breasts. The left side had the DCIS and the right side was prophalactic so it was nipple sparing. I would get shooting pains that kinda lingered in the area where the fluid was. I would really feel it when I was putting the bras on. Do you think that struggling to put the bra on and/or the pressure from the band caused the pain? I had a bit of the pain the week before, but not nearly as intense or long lasting. The nurse at the PS's office said it was nerve regeneration and not to worry about it. I stopped wearing a bra again yesterday and have had no pain since then. I will also say that I haven't had any tinges when I reach for the seatbelt (which I did before). Ideas? Advice?
My second question is: my tummy overhang is obviously gone from the DIEP. However, there's an area that starts just above my "new" belly button (which is too much of an outie for my taste) and encompasses about an inch and a half on either side going vertically down my abdomen that is a little puffy. I hate to think my pouch is coming back vertically. Would that still be some fluid?
Finally, I had nipple sparing on my right side. At one point the nip turned dark purple, but then scabbed over and turned pink. The skin has just about all come back. I've been keeping a wet-to-dry gauze over it and taping it town. Now my once very big, protruding nipple is starting to cave. Could that be from the direct pressure the gauze being tightly taped? I'm also surprised that my nip is smaller than it was before. The PS said it wasn't a bad thing since mine were so big before, but the assistant also mentioned that they had considered using the huge nip for nipple sharing when they replace the left one. Has anyone heard of that?
Ok. I can't count. That was actually 4 questions.
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iswimbikerun - I have heard of them using a larger nipple for recon on the other side. But I don't know anything about it, just that they do it.
Swelling can supposedly take 6 months or more to go down completely. I'm at 3+ months post MX and still feel bloated here and there.
No thoughts on your other questions. Sorry.
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cmbear- That is so disappointing! I'm sorry. This is a hard surgery to get yourself ready for and then for them to reschedule it...well, that just sucks.
iswim- I'm 11 weeks out today and I still have some swelling. I have that same vertical area from just above the belly button down to the groin area below the scar. It's getting better. Not nearly as swollen or as tight as it was. I can't answer your other questions. I haven't worn a bra since surgery and I don't have any nipples. lol Hope someone comes along who can help you.
Tomorrow I go in for my pre-surgical stuff for Stage 2 on Monday. Just the pre-surgical evaluation. EKG and history and physical. Nothing new since Stage 1 in February, but I guess they have to do it. And after that, I will have more naked photos done. Geeze, I hate that part but another necessity I guess. Afterwards I'm having coffee with my clinical trial nurse and that is always fun so something to look forward to after the icky stuff.
Stage 2 on Monday. Not having much done. Just lipo to fill in a few small divots and make righty the same size as lefty. I have decided against nips and I don't regret it at all. I'm doing 3D tats even if I have to fly to Baltimore and have Vinny do them. It's just day surgery for me and I'll be home on Monday. Love not having to stay overnight. Sure is different than Stage 1! So ready to get this all behind me!
Hope everyone is doing well! We are quiet here lately.
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Hello ladies! Well the op is all done and all is looking well. Today is day 2 and I have been up out of bed for a couple of hours and the room has finally stopped spinning. Pain is not too bad but the meds are holding that at bay. The PS are happy with how it all looks and blood flow is really good. The surgery took 12 hours (bilateral Diep ) and I have a flat tummy! The scar had to be higher as I had lost fat below but very happy with how it looks! Hopefully I will be out in a week!
Cheers Robyn -
Thank you to goldlining and c8ndygr1 for responding. It is awesome to hear real stories from women that have gone through this. I see another plastic surgeon who does the DIEP flap at the end of the month. One thing I have noticed is that my right arm is 1/2 inch bigger around the bicep and 1/4 inch bigger at wrist so thank goodness I will be seeing the surgeon in a couple of weeks to see about getting it checked for early lymphodema. (I had 15 nodes removed). I can't thank you ladies enough for passing on your experiences! I have been walking 5 km a day with walking poles to get the upper body workout and work my arms as well. I go for my herceptin treatment on May 3 and after that I only have 3 more to go! I had to phone the clinic though and tell them that the nurse totally missed my portacath and put my herceptin in the side of the port instead of through the top and boy has that been painful! So frustrating when I have to deal with the nurse (who is a sweetie) not being as experienced with the ports as my original one was. The first one has retired though and the last two times of treatment the new nurse had to try twice the first time and 3 times the second time...still missed the proper hole but did manage to get it in the side...sigh...
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Just found this thread! I have to read through it all. I am waiting for the call to schedule diep flap surgery. Had a consultation in October. Still not 100% sure so would love to hear real life experiences. Anybody here had surgery in Toronto? I had a mastectomy in 2008 so have had some time to think about it.
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snobird: I am at 10 days since surgery, how in the world were you skiing at this point. WOW. an inspriation. but I still have drains in, will have the 2nd procedure to fix, take out excess skin and tight up everything this thursday but still are not walking great etc. You must have been in amazing shape prior.
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here's my story: Surgery Monday 4/23. I am 10 days post surgery. surgery was 10 hours, in ICU for 3 nights, regular room for 2 nights. In ICU they wake you every hour to check the vein flow, kind of like a sonogram for veins. You get absolutely no sleep. by the time Friday night came I had enough of people poking and waking me. I could have stayed two more nights but went home Saturday morning just so I could sleep. At that point that's what I really needed, all the drugs come with me so little pain. The pain really wasn't from my breasts as they are totally numb but my stomach in that it is so tight it's unbelievable. I left hospital with 4 drains, 2 breast 2 abdominal Doctors happy with everything. I took pain drugs every 3hours to be on top of it so never in real pain just discomfort; again because my body feels so dam tight. Monday after leaving hospital went to PS and she took out 2 breast drains, put on some gauze under the sexy surgical bra and sent me home. Schedule the stage 2 surgery, which is to tighten everything up, take out excess skin on flap and make it all look good. this is a 3 hour surgery they say. after this the only thing left to do will be tattoo and nipples which they say is in about 2 months. I am here in NYC doctors are Dr. Carlin Vickery who is amazing! oh abdominal scar is as low as my c-section scar but reaches from one side of me to the other litter ally hip to hip; scar around the bellybutton cause they have to cut a new open a new one; and who knows scaring on the breasts as I haven't looked yet. Pillows propped up in bed, wearing night shirts to sleep which are big and bagging since the drains are pinned to my bra and in front but during the day I put on yoga pants I got at target really great and the drains hang off my bra of which I either wear a big tshirt or a zipper up also got at target which has pockets insider to put the drains, its by Champion and sold in the area with the ex cerise clothing. I think I covered everything, let me know if anyone has other questions, will try to be helpful. Good luck and feel well to all!
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rtnyc.. I am surprised they are doing the stage II this soon... I waited three months and wished I had waited 6... at three months I was still swollen, so there is no way for them to know 100% what needs fixing... so next Jan 2013 I will have stage IIa... And then wait at least three months for tattoos...
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I too was surprised to read about Stage II coming so soon for you, rtnyc. It is definitely hard to tell how things will be at this point, things are still so out of whack. I had Stage II about 3.5 months out and it was OK. It's a fine line to walk, wanting it DONE but giving things enough time to heal to see what needs to be done.
I've also been surprised about re-excisions happening so quickly. I had a month between surgeries as my BS wanted me to heal up before she went in again. One more way that we see how every surgeon is different.
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Cookie.. I was reading your signature and it says >7cm... did you mean cm or mm? 7cm is pretty big... then the next line say 1 cm IDC... Did you have 7cm DCIS and 1 cm IDC??
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Yep. I don't remember the numbers now, but the area they took out in my first LX was greater than 7cm in one of the three dimensions. They took out a lot. I started as a G cup, but it was pretty noticeable. AND we didn't get clean margins, so they took out more, and then again with the not clean margins, etc... In the middle of the large area of DCIS was an much smaller area of IDC. I don't think that the whole area was FILLED with DCIS, but it had spread pretty far in the ducts (hence the not clear margins etc...). It had probably been there a while, but still wasn't palpable by any of my docs. They found it on my very first mammogram - calcifications - the radiologist was pretty sure it was cancer before they did the biopsy even.
In the end I had a UMX w/DIEP - NOT what I was planning on in the first place, of course.
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It is amazing how many times you hear how things change once they get in there and take it out.
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DFOnt - Toronto here. PM me if you want.
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Yeah, I think the PS had an idea of the size of the main area before surgery from MRI, but I had that pesky DCIS that would be there, then skip a bit of the duct then show up again - hard to be sure they got all of it when it does that.
I'm at home now so just pulled out the path report from the first LX. I tsays DCIS spanning 7.9 cm. The specimin size was 8.7 cm x 8.5 cm x 3.0 cm. Being the science teacher that I am, I calculated the volume of what they took out and realized that it was a bit more than 220 mL, which is almost 1 cup in volume. Now, I'm not sure that was how much they actually took out as the dimensions were the max in each, but still, they did take a lot.
I knew that there was an indent in my breast, but until I saw photos of me from the front, I didn't realize how deformed my breast actually was. If we had ended there, the BS said that they would have done some fat grafting or something similar to fill it out. Now, instead we're going to reduce the other side so I'm going from a G cup to a C or D cup. My choice.
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Once my BS figured out I had 9cm of DCIS, in addition to the mucinous tumor, MX was the choice. Thank goodness because there was an IDC tumor hidden near the DCIS. I was about an F cup. I'm a D cup now and loving it! I had a breast seroma that drained 220cc the first time; when I converted measurements I was stunned that it was almost 1 cup!
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Paula... After your seroma was drained did it leave a divot? Mine did and it was only 15cc.
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Wow Robyn, up and posting on day 2!! Good for you!! Get some rest!!
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Paula - I'm a little worried that the PS didn't reduce me enough, but it is what it is at this point. I already had him reduce the DIEP side once about 3 months after the DIEP surgery. Now he gets to lift and reduce the other side (still original equipment) so that they match - then nips and areola. I'd probably skip nips and either get 3d tatoos or nothing, but since I have a nip and areola on one side I think they should match.
I'm not excited about more surgery but I AM excited to get this whole thing behind me.
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Hello. I'm Jennifer and I'm 10 days post op after BMX w/Immed DIEP. Physically I'm doing well, but mentally today was tough. Feeling a bit claustrophobic in my own streched skin. And Frankenboobs are more upsetting than I thought they would be. No regrets, but it still sucks.
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Jennifer--I'm chuckling at your reference to Frankenboobs. DH keeps referring to me being a Franken character as you can see the cross hatch marks around my incisions. I know they're fading, but he things it's funny nonetheless.
Hang in there! Some days are tougher than others (I'm almost 8 weeks out). Ironically, week 7 was the hardest, but this week has been great!
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Hello. I'm Jennifer and I'm 10 days post op after BMX w/Immed DIEP. Physically I'm doing well, but mentally today was tough. Feeling a bit claustrophobic in my own streched skin. And Frankenboobs are more upsetting than I thought they would be. No regrets, but it still sucks.
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