2018 DIEP Surgery
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I'm not that far out but I do understand nerves grow about an inch per month. I'm still numb under arms but I expect that to come back eventually.
Saw PS today for my 4w follow up. The good - everything healing well. No necrosis, seromas or complications. He thinks we can get volume back with lipofilling. I had some doubts but with risks associated with implants after DIEP, I was willing to give it a shot. He said we could do it in 3m. Awesome! Best part - I can toss the ab binder and start light exercise.
Surgical coordinator called me into office to schedule and said first available surgery is March 2nd. I almost cried right then and there. I'm trying to put on my big girl pants and figure out how to retrain my head to stop thinking about this process as if life is on hold. I'm trying to figure out what tricks I can use to comfortably stuff my bra on a regular basis. And I'm trying not to go dark about the likelihood that they cant fill all the divots and flatness with one session. So sad and disappointed right now...
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hopewins, don’t give up. Things happen and surgery dates open up. Don’t hesitate to call the scheduling department and check on a regular basis.
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Hi all! My DIEP flap surgery is scheduled for October 16, and I’m a little (ok, a lot) terrified. I’m 5 1/2 years post- bilateral nipple sparing mastectomy with implant reconstruction (the recalled Allergan implants - ugh). Other than having a great cosmetic result, I haven’t been happy with the cold, firm gummy implants generally and especially hate having my chest wall muscle in front of the implants. After talking with my oncologist and plastic surgeon, we decided going ahead with DIEP and getting rid of the implants would be a good solution for me. Thankfully my weight gain since being on AIs means I nowhave ample midsection fat/tissue. Ha!
I’ve been making my way through this thread, and finding lots of good info. Would love to connect with others going through the same surgery in a similar timeframe.
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Hey Lawyergirl. I am in the Bay Area too. So you are taking out implants and doing DIEP? I Am just done w BMX w expanders and supposed to do implants in a few months. I had nipple sparing and my expanders are actually over the muscle not under...
I was told not enough belly fat to do the DIEP (which I still find hard to believe) at original consultation and I was happy at the time since I was so scared of the mega surgery. But now I am worried about the 2nd surgery to come for the real implants and all the other risks. Any thoughts or experiences living w implants? I am feeling torn and wondering if I should switch now somehow to DIEP. the thought of opening stomach muscle etc is a bit daunting also. How did impanta feel? did you ever forget they were there? Basically all choices suck huh?
PF
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lawyer girl, I had a similar experience. They talked me into doing an implant and I wanted a DIeP, so 2 years later, I am having my DIEp with significantly worst cosmetic results then if I did it in the first place. Could not live with the implant under my muscle. Begged to have the implant over the muscle, but they said I was not a candidate because THEY streched out my skin and it could no longer support the over the muscle implant. It was cold and I just felt like it was dead, the muscle ripples on it were ugly and the sensation of having it inside me, it was awful. I am 10 weeks post op DIEP. It's better then the implant. I swam in the pool and even though my left side felt different I did not feel the sensation of the implant rubbing against my muscles. That was great.
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Hi purple-flower & AliceKo!
Purple-flower - Yes, I'm getting my Allergan gummy implants removed and having DIEP reconstruction done at the same time. And yes, all the options definitely suck!! I was also scared going from tissue expanders to implants. My procedure to swap expanders and implants turned out to be a piece of cake. Outpatient, no pain, and I almost immediately had a better range of motion than I did with expanders. The cosmetic result was also pretty good. At this point (almost exactly 5 years with the implants), there are definitely times when I forget they are there. Maybe even most of the time. But when I'm aware of them, they feel foreign and weird and cold and hard. Not hard in a tissue capsule/scar tissue way, but hard in a firm, gravity-defying, unnatural sort of way. I've been able to do almost all my regular activities with them, including weight lifting (squat and dead lift 150+ lbs), cycling, running, kayaking, etc. I've only been able to do "girl-style" pushups because doing full on pushups with the location of my chest wall muscle freaks me out. Also - because the implants are so insanely firm, it's been almost impossible to find a bra that fits right. The cup has to be the exact shape of my breast or it looks weird under my clothes. My decision to get the implants out and do DIEP flap right now is a combination of concern related to the recalled implants, the implants never really feeling quite like "me," wanting my chest wall muscle to be back where it belongs, and my desire not to have to continually monitor implants or have future surgeries to swap them out since I will (hopefully!) live much longer than the lifetime of any implants. Maybe it would be worth having another conversation with your PS about whether DIEP might be an option for you before you do the implant swap?
AliceKo - I totally relate to all of the things you were feeling about your implants! I'm really happy to hear that you're happier with the result of the DIEP surgery, and that it felt better when you were swimming. Would you mind telling me a little more about the difference in cosmetic results after having implants vs if you had the DIEP procedure for your initial reconstruction? My PS made it sound like the cosmetic results would be just as good now as if I'd had it done initially, but maybe I should ask more questions about this. Any tips for surgery or recovery based on your recent experience?
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I am strongly considering 2020 DIEP Surgery for both breasts, but don't know if any doctors in MN practice. Of course, the Mayo Clinic is located in MN, I don't see any doctors on the list from my locale.
I am planning on the DIEP because I had to forego reconstruction at the time of my BMX this past January and I've read about way too many issues with implants. Also, to me, implants are foreign objects to the body. I am concerned because I am overweight that PS won't consider me a good candidate for DIEP.
I'd love to hear specifics and possibly recommendations for DIEP reconstruction PS. Thanks.
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Tinkthetonk - I am overweight and I was a perfect candidate for DIEP. My PS never mentioned anything about weight. I had plenty of fat and skin in my abdomen so it wasn't an issue. I had my DIEP surgery July 24th. My surgery went longer than planned as my PS was having issues with the blood vessel for my right breast. Otherwise everything went well. My only issue was at the same time I had my right ovary removed the old fashioned way so my right side was very painful. Drains were a nuisance but that is to be expected.
I have phase 2 November 22nd.
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I will have a UMX and immediate DIEP reconstruction on November 13th. Only concern is if the path report doesn’t show pCR. I think im actually more concerned about the surgery than I was chemo, and I was just plain scared about that! I’ve been reading the surgery/recovery checklist. It’s been extremely helpful!
Diane.
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Hi everyone, I haven't been here for quite a while. I had my DIEP July 2018 and 1st revision Oct 2018. That left me asymmetrical and 2 different size cups. The radiated side was a B cup and the noradiated side was a D cup. No inframammary fold on the non-irradiated side. and sits quite a bit lower than the other. I had phase 2 10 days ago at a different hospital. I went to PRMA in San Antonio. I am doing well except here is quite a bit of discoloration to my breasts. I can't see it very well because there is foam bandaging that can be removed until 2 weeks post op; but around my breast it is very dark red, purplish, and in places it actually looks black. I took pics of it and sent it to my PS office, but I am sure they won't see it until Monday. Anyone else remember anything like this with phase 2 revision for bilateral DIEP?
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Carmstr835, if you had lipo and fat grafting then there is a lot of bruising that is caused by this procedure. The good news is it clears up in a couple of weeks. It’s good that you sent a pic to your PS for clarification. Keep us posted on how you are doing.
Bella
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Thanks bella
I did, but not there, it was in my cleavage area, this discoloration is the side and below the breast. But it is probably just bruising. I wont know what the breast looks like until I can remove the foam. I should hear something by tomorrow to be sure.0 -
Dvhmouse:
I had my DIEP surgery on the right breast on 7/25/19 and my path report didn’t show pCR. That only meant that instead of doing Herceptin & Perjeta for a full year of treatment, my MO switched me to Kadcyla every 3 weeks. The side effects are much better than the H & P. No diarrhea!!!
The DIEP surgery itself wasn’t that bad. I was really sore on my lower abdomen. My chest was fine because they used a nerve block during surgery—that was wonderful. Getting in & out of bed was slow for a few weeks. Ask & see if the hospital has a cancer patient gift shop. Mine did and they had the camisol/bra with Velcro pouches to hold the drain, that was really helpful. And they gave it to me for free, even better.
Angie
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Angie,
Thanks for the information on Kadcycla. I found two very tiny masses this week that my BS confirmed Friday, so I may be looking at Kadcycla after surgery. Will you have radiation, too? I was told with an incomplete pCR that I would have both radiation and Kadcycla.
The breast surgeon told me that the breast reconstruction isn’t as painful/uncomfortable as the abdominal incision area and that the major complaint there is tightness. I’m getting a Brobe for once I come home as well as an extra front close bra. I don’t know yet whether the PS is a “wear a bra 24/7” type or not, but I’m trying to be prepared.
Diane
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Yes it is just bruising. I just heard back from the PS office so all is good
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dvhmouse,
No radiation here. I was initially going to have radiation b/c I was going to have a lumpectomy. But, then they found DCIS in the same breast so I couldn’t do just the lumpectomy.
The abdominal incision was quite sore, tender & tight, but very manageable. Moving around in the bed was tricky & awkward for several weeks after. Now feeling so much better, just numb on the abdomen & breast in a weird way. Tucking my shirt into my scrub pants & just the feeling of the pants on my scar feels weird, almost like you can’t really feel the clothing. Hard to describe.....
Angie
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Angie, your description was really helpful! Did you end up spending the first couple of nights at home sleeping in a chair, or were you able to get comfortable in bed? How long before you felt like you could do “normal” activities?
For those that had UMX surgery, were you in a compression bra from day one for a couple of weeks, or did your PS limit the number of days you needed to wear one?
Thanks!
Diane
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Dvhmouse - have you confirmed with your PS that he/she will still do immediate DIEP if you need rads? My PS would have put in a TE if I was going to need rads. Then I would have had delayed DIEP.
I don't recall reading about DIEP patients wearing surgical bras, but maybe I just missed it. There is certainly a lot of variation from PS to PS. I think I've seen that TEs and direct to implant get surgical bras and DIEP often uses the zip up camisoles if anything.
I was cleared to start wearing bras again at my 4w appt but I think that's early. I'm waiting impatiently to find a bra that will be comfortable! Like others have said - underarms are numb but sensitive. Chest wall/rib cage is very bruisy feeling. I still prefer commando (on top) while I'm at home. I'm almost 6w out from surgery.
Recliner is great if you can do it. I think I slept in one for 2w. You can't use your arms to adjust your full body weight and you can't use your core muscles... so if you slide down in bed it's a PIA. You almost need to roll out of bed and get back in to adjust. There are a few umx'ers here, so hopefully they can give u a better perspective.
Good luck!
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HopeWins,
I haven’t confirmed whether the PS will still do the immediate reconstruction if I need rads, but I have an MRI on Tuesday to check if there have been any changes (good or bad). If it looks like the lesion has spread, my BS will let the PS know. Other options will have to be considered at that point.
I guess I’ll be wearing my camisoles a lot, which is fine as I prefer those or nothing. I just plain don’t have that much to support! 😉
Diane
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dvhmouse,
I was in the hospital 5 days (I had some bleeding due to a mild bleeding disorder & had to return to the OR) & when I came home I was able to sleep in my own bed. My husband bought me one of those “husband pillows” to prop my head & chest up. I then put a pillow under my knees to try & keep me from sliding down. When I would slide down I’d have to roll on my nonsurgical side & push myself back up, gently. Tricky to limit the use of my surgical arm which is also my dominant arm. My hubby has been a great help with assisting me in or out of bed.
I was able to do normal things around 2-3 weeks after surgery but I really limited my activities because I was just tired. I think I finally vacuumed myself around 5-6 weeks after surgery—so thankful my mom vacuumed for me while she was here.
I had a unilateral mastectomy w/DIEP and my PS had me wear nothing or just the zip up camisol for 4 weeks. I mostly wore no bra with my pullover one-piece dress....tricky to get on & off without over-using my right arm, but I somehow managed. Then I could wear a light shelf bra after that. That’s what I’m still wearing because it’s pretty darn comfy. My PS didn’t want any compression garment on my chest for fear of compromising the circulation. I did, however, have to wear Spanx shorts for 8 weeks. I absolutely hated those things! I go in for phase 2 surgery on Nov. 14, and will probably have to wear the Spanx again because he’s going to take fat from my inner thighs to fill some on my upper right chest wall. 😖
I’m now about 10 weeks out, I went back to work last Monday. Feeling pretty good overall. Still numb in my armpit, upper arm & side of DIEP breast and all of the incision/scar areas. Still get occasional nerve ‘zaps’ in the underarm, not sure how long that will continue.
Angie
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So it has been a few years for me since I have been on the site but I just had DIEP surgery on my left side 9/26 so not quite a week ago at University of Michigan hospital. I was diagnosed 4 1/2 years ago and had my mastectomy 4 years ago. I had tried implant and TE that failed so I waited another year and had this surgery. So far everything seems to be going well. It has been nice reading these posts and finding a place to look for answers and share information. I was surprised to hear people wearing camisoles or bras as my surgeon said nothing around the DIEP or stomach. My first follow up appointment is next week. The thing that surprised me the most after surgery was having this heat hugger on me for 48 hours. It was the most miserable thing to me but they said necessary to help the vessels and circulation generate. Did anyone else have this
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Duzy, I had that bear hugger heated blanket and my room was really warm plus no caffeine. Not fun.I had no compression on breast but a binder and then spanx for stomach.
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Duzy,
I had forgotten about this but for the first several days in the hospital, they kept my room really warm. Like 85 degrees warm to make sure the blood vessels stayed dialated.And I was having some hot flashes too. My husband bought me a goody bag filled with gum, mints, a battery operated fan & a rechargeable fan. I still use those fans for hot flashes!
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exact same they gave me two little fans but they did not help much and the no caffeine was just as bad. Theysay for at least 3 more weeks. Maybe I will finally quit the caffeine habit
The hospital kept the room really warm as well. That to me was the wors
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OCDAMY. Did you wear the spandex right away or after the incision healed
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Duzy, I started wearing an abdominalbinder the day I left the hospital then switched to spanx after 2 weeks. I also wore one for stage 2 where they did a lot of lipo around hips.
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For those of you that had to wear Spanx, how high did they come up (over belly button?) and how long were the legs?
Sounds like I’ll need short pajamas for the hospital, so I can stay comfy. I hate being too warm.
Thanks,
Diane
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they said nothing to me about the binder or spanx so I will have to ask. Thanks for the info
I was in for 4 days so I just wore the gown and I was so hot it was easier.
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I liked the binder better than spanks. It just wraps around your hips, goes up to your waist. It was more comfortable and I thought helped me stand up taller with the tummy incision. I wore the spanx when I went out because they lookbetter with clothes.
I just wore the hospital gown too. I had a catheter the first day and they have this monitor hooked up to the DIEP breast and they come in every hour the first day with a Doppler to check for blood flow. You won’t want to wear pajamas.
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ould one get a plain super soft camisole/chemise on underneath the binder instead of a large white t-shirt?
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