2018 DIEP Surgery
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Lula, thanks for these important reminders when dealing with HR!
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Thanks Lula, I am so worried about losing my job. I have never had a warning of any type, i will print and forward everything to my hime email!
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Sage advice for all of us, Lula. Thank you!!
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Hi Ladies,
Reporting in 8 days after Phase 2 surgery. Turned out a little different than expected because going into the procedure my breast surgeon biopsied a spot she didn't like on my skin and turns out -- surprise! chemoresistent cancer hanging out on the scar of my original biopsy site. Yes, you can get local recurrence even when your whole breast has been removed. Cancer is a never ending party. So I knew about a week prior that I was now going to have to get radiation after this procedure, which changed the original plan a bit. 6 months after radiation I can go back and fix all the problems radiation caused, and hopefully do a nipple recontruction then too. So a two-phaser just became a three-phaser, but they said whatever they do next is minor and can be done in the office, not under anesthesia.
I had my "dog ears" fixed on both ends of the abdominal scar -- this is the term for where the skin sticks out a little at the ends. This was an elliptical excision that now looks like a few inches added to the end of the original scar. It certainly is long! But no difference in terms of disguisability under a bathing suit, etc. and it'll be nice to be totally flat there. He didn't do any liposuction in that area and I don't relate to the description of "boxiness" in the hips some ladies here have, so I guess we are all just different.
On my breast, my PS had made the reconstructed side larger during DIEP surgery, he explained that it made for better outcomes with the skin. He cut along the original vertical scar under the breast and reduced (using liposuction) and lifted the breast. He didn't go for complete symmetry, as he wanted to allow for the tightening that will likely happen during radiation.
The breast surgeon also performed a lumpectomy -- which kind of cracked me up, as if a mastectomy wasn't enough for this poor breast now I got a lumpectomy too! -- on the inner area right near where my cleavage starts. I suspect that site will be kind of a bummer post-radiation -- there's a dip under the skin that PS says will look worse after radiation "shrink wraps" and the scar may show under low cut tops.
I had the procedure on a Thursday and had scheduled to be out from work through the following Friday. Honestly, I could have gone back to work probably by Wednesday, but had a flurry of doctor appointments and figured a mental health day would be a good thing, so I didn't. The procedure took about 2 hours under anesthesia, they were able to use propfyl so I had none of the debilitating naseau I had with the DIEP procedure. I could walk easily and took hydrocodone for about 2 days then downgraded to tylenol/advil then down to something maybe once a day. The abdominal incisions hurt the most for a few days, after that faded the lumpectomy site hurts the most on and off, but super manageable pain level, no comparison to first surgery. I had a lot of fatigue for 3-4 days. Also, not sure why, but residual nerve pain from my mastectomy flared up, so I had to increase my dose of Lyrica (I have been on this since my first surgery, but had lowered the dose midsummer).
Interesting aside -- my PS put a cadaver nerve in my breast during original reconstruction, and connected it to the skin paddle created from the abdominal tissue (basically my aerola replacement). I have complete sensation in that skin, which surprised the PS quite a bit! If that choice is available to anyone I would jump on it. It's very different than the rest of my breast which has mild to zero sensation depending on area.
It's really nice to be close to the same size, and I'm bummed about the cosmetic setbacks to come, but overall I would say Phase 2 was super easy and completely worth it. For those closer to the beginning of the journey, I'm 8 months out from the DIEP surgery (simultaneous to my mastectomy) and I feel it was very worth it, despite how challenging the recovery was at times.
Hope this is helpful! Happy to answer any questions.
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Hi All,
I just interviewed my fourth PS and think I will go with him. Out of the four I've interviewed, he was the most thorough and gave very detailed info about what he'd like to do. He seems very enthusiastic about making me look as good as possible. The only issue is that his office is an hour and a half from my home. That won't be an issue for the surgery, but all the post op appointments may be a pain with all the driving. The PS says he wants me to have someone available to drive me around and look after me for 6 weeks. Considering how easily I recovered from my mastectomy that seems like a lot, but I will ask my mom to come help. I'm sure others have had similar issues. If anyone has any tips I would appreciate it. Oh, I only had a UMX, so this is only DIEP for one side.
I hope everyone is doing well. My surgery probably won't actually be until early 2019, but I have learned a lot from this thread.
Thanks!
Rebekah
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Hi again everyone. For those of you who had stomach drains what did you wear home from the hospital? I am thinking yoga pants and a long, big button down top. Thanks!!
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that is what i wore.
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My surgery is done! I feel great and hopefully discharged tomorrow. No narcotics just Ketorolac and Tylenol and I can think clearly! A bit longer than expected. But I think it was all good. Will find out in the morning when I see the surgeon 🙂. I believe he fixed everything that I asked him to. But I have a Breast binder and abdominal binder this time for my stage 2 DIEP .the pain is not as bad as I expected.
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carmstr- so glad everything went well!! Warm thoughts and healing wishes coming your way!😀
esny - that’s exactly what I wore home and for weeks after surgery anytime I went out.
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Lots of questions
Has anyone not needed the phase two? Or had very little done? I'm a chicken and don't really want lots of work done unless it is needed.
Do they have to do the oval scar in phase one? Does your new foobsize depend on your abdomen tissue? I have gained weight but want very small reconstruction and these C implants out. Would losing weight be good or bad? I've had two different things said at consults. Also had a PS tell me that my pain might be worse?
Anyone have frozen shoulder going into phase one? I'm doing therapy and dry needling but not having much progress in movement.
Thanks
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I haven’t had phase 2, but I’m going to. I could definitely live with things as they are, though. My dog ears aren’t super big, and my breasts are very close in size. My original hangs a little lower than the DIEP one, but not in any way noticeable if I have a bra on.
You don’t necessarily get an oval scar, but I did. I was surprised, because I wore tissue expanders four months, and thought there was enough skin. My surgeon said that the breast hangs more naturally with the oval. Yes, foob size depends on abdominal tissue, and whether you are getting one or two. Mine came out bigger than he thought he could do.
I don’t see why you would want to gain or lose weight if you are not underweight or significantly overweight. My BMI was just over the “normal.”
I had very little pain with the DIEP. No frozen shoulder here, maybe someone else will chime in on that.
Good luck with the decisions, and there are never too many questions!
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Shades5blue, I did not get the oval scar in phase 1 (haven't had phase 2 yet). My PS originally said I would, so I was surprised after surgery. She just used my under-boob scars to perform DIEP and a lymph node transfer. I did have a cold shoulder going into surgery and made sure the operating team was aware of it. It is almost gone now - I've been going to PT twice a week for it and the limited range of motion I’ve had on that side since BMX and radiation. I'm seeing great progress.
I've had two “extra" good things come out of my 16 hour DIEP surgery. First, the bone pain I was experiencing with Letrozole was gone when I woke up (although stiffness remains) AND the TMJ I've had for 25 years is gone. My dental hygienist said (my long) intubation during surgery must have moved my jaw enough to get it back position. No more popping or pain keeping my mouth open at the dentist! woohoo!
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Hi there. I am 39 and recently diagnosed. I am in a pinch to decide if I want a diep or implants. They need to know asap. I am having reconstruction at the time of a dbl mastectomy. Thoughts? Recovery times, complications etc. Any advice would be really appreciated!!
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It’s a very personal choice and influenced by your goals. First off, i would not let anyone rush you in the decision. If your cancer is so aggressive that your oncologist is pushing for the mastectomy asap you can always do the reconstruction later. You need to research and talk to plastic surgeons in order to make an informed decision. It may help to have an idea of your treatment plan. I suggest that you read this thread from the beginning for info on the many recovery from surgery paths women have had. There are also some threads on implants as well as single vs double mastectomy. Read those too.
Not all plastic surgeons can do Diep so you may need to talk to several. My breast surgeon recommended double with implants. I am 100% happy that I didn’t follow that recommendation.
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Hi everyone - just checking in quickly to say things are better but definitely haven't gone as expected. I'm going back into for additional surgery tomorrow morning as all of my incisions are open - both breasts and my abdomen. My abdomen is healing as is my left breast but my right cancer side is just ugly. The abdomen seems to be just "one of those things" that happens. I still think it's related to my first night in the hospital when I was so sick. They told me I couldn't pull my stitches but I felt like I'd been ripped in half. Was due to morphine which I should have known would make me sick - I'm pretty weak stomached anyway - even with the patch and pre-meds I was still vomiting. My left breast glue came off too early and while it's looking better, I'll be glad to have it closed. My right breast had a large hematoma and a blood blister while in the hospital so I've been dealing with it all along.
I'm finally at a point where I don't completely regret doing this but I'm super scared about tomorrow and it not working. I'm set to go back to work next week as I can deal with the dressing and the issues and still function. My posture isn't great but it's getting there.
Please send prayers that tomorrow's procedure does the trick. I need something to go right with this procedure.
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I am going in tomorrow for my phase 1 surgery. Oddly calm today as opposed to the last few anxiety- ridden days.
Ill post when I can about recovery
Shellybeans- so sorry to hear about your complications. I Hope all goes well for you. Sending good thoughs your way.
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Good luck esny! Hoping for a successful surgery and recovery.
Shelly, sorry to hear about your tough recovery. I sure hope they can get all that cleaned up.
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I still have a hip drain that's shows not a hint at slowing 4 weeks post op. Any suggestions for compression with side zippers?
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Scheduled for my DIEP and removal of implant tomorrow.
I'm ready!
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I have had phase 2 and will need phase 3 in 3 more months. This one will even my breasts and add more fat grafting. I hope that is all. My insurance is nearing its lifetime cap...
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Thinking about you esny and kicking-cancersbutt...hope your surgeries go great tomorrow. Shellybeans, praying that yours goes well too, I'm so sorry to hear about these complications and that you've got to have more done. I hope they get you all fixed up.
Mucki1991, sorry to hear you still have a drain. I never used compression garments so don't have any recommendations but hope they will be able to pull your drain soon. They pulled mine at 5 weeks even though I still had output. I've had one manual draining and am having another one tomorrow.
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Bogey1925, I made a list of pros and cons. If you have a top microsurgeon as your PS, that makes your decision much easier. Ask how many surgeries they do at your center and their results. I’ve had my troubles but would never change my decision. The thought of dealing with expanders and the shelf life of implants weighed heavily on my decision. Good luck with your decision and keep us posted.
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Has anyone had experience with KU Med in KC?
Dr Butterworth at KU did a friend's surgery and she had beautiful results. I had reconstruction 10/2004 (different Dr), I am not a big fan of the implants so I thought Diep would be better for me. I am a little intimidated by the recovery! It sounds worse than the mastectomy!
I just scheduled my surgery for the end of March (they are booked that far out!)
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Hi All! I am joining you with a DIEP soon to be scheduled for next month. At least I think so. I am new and overwhelmed. Here’s my first dilemma:
I am torn between two PSs who both seem great. The only real difference is that one says he can do the procedure at the time of the mastectomy no problem and has better results that way. The other says no and she must wait for the final pathology report from mastectomy. I am DCIS grade 3 as of now and am opting for BMX. She does not want to have reconstruction if I may need radiation. The first doc who will do it once (and my oncologist) say that radiation is unlikely because of the BMX and would happen only if there is a lymph node problem. I really only want one surgery and recovery period because I have lots of little kids at home. Any advice?
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frogdog - i can only offer my experience. Neither my breast surgeon nor the two plastic surgeons I consulted considered immediate reconstruction even before we knew the full treatment plan. You can ask for a sentinel node biopsy ahead of your mastectomy- it would be outpatient but general anesthesia. That would answer the node question. If there is a chance of radiation I would delay DIEP until after. PM me if you want a picture.
Happygirl - this thread is long but if you go back to the start you will find lots of different stories from women. For me diep was easier than the mastectomy
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I second everything the Runrcrb said. I would not want to have rads to a DIEP breast and I found DIEP easier than the mastectomy. If a sentinal node biopsy is possible, that might be the way to go if you want immediate DIEP.
I am so sorry to hear about the drains hanging on that long! That must be awful.
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FrogDog12,
I was almost 100% certain that I would not need radiation prior to my mastectomy. My plan all along was to have TE's put in because I was initially going to do implants. Once I got into surgery we learned that the chemo had not had any effect at all on my cancer, so radiation was put on the table. That was a shock because I had an MRI after AC and it had showed shrinkage. Apparently it actually grew on Taxol. So, even though I had no node involvement, we were just so worried that the tumor had actually grown during chemo, that I decided to be aggressive and do rads. If I had done immediate recon, the rads would have damaged it.
I doubt this will be the case for you, but I just wanted to throw it out there. I totally understand the desire for one and done.
Rebekah
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FrogDog12, IMO it's better to look at the long game with BC and recon and not short term results. You can space out your recon surgery as needed to accommodate family - they will adapt.
DIEP recovery is usually (only) about 60-90 days and that is such a short time in the grand scheme of things - after BC you deserve to put your well being first for that little while. I'd go with a two stage approach and keep more options open.
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Hi all. Please forgive me for asking questions that have been asked before - I have scrolled thru the posts and found so much good info but still have questions for anyone willing to respond
I am going to NOLA for a consult in December - surgery is scheduled tentatively for March to get me on schedule. I am 10 years out - had bilateral with immediate implants 10 years ago but got an infection last year and had them removed this past March. I am on the thin side but have a pooch (50 years old, too many carbs and hasn’t hysterectomy) so hopefully i have enough to make two boobs.
What questions would you ask at consult? (Dr Sullivan)
It seems 4-5 days in hospital is norm, I plan on staying in New Orleans for another 5 days after that. Then probably flying back to NY. What does 10 days later feel like? Still have drains? Friends will be down in NOLA ans will be taking their camping trailer from place to place and want me To go with them since I don't have to be back to work. I assume that is not a good idea and i should just fly home to recover?
Did I read someone also had a lymph node transfer? I have very slight Lymphedema but it would be nice not to have it at all if possible?
Thanks in advance
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Hi Everyminute - I had a lymph node transfer in July as part of my DIEP surgery. I think it is working. My affected upper arm is definitely a bit bigger than non-affected arm but not so big that clothes don't fit. I've also been getting massages as part of my PT to increase my range of motion, and that definately helps too. I'm not feeling that heavy or tingly feeling I did before.
Like you I'm hoping it is insurance against lymphedema showing up later. As for now, I don't notice swelling like I did before and right after surgery. Haven't worn my sleeve in weeks - I rarely even think about it anymore.
It did add to the length of surgery but not to recovery, I didn't notice much difference between my good side/good arm vs the transplant side.
The transplanted tissue was first taken from my opposite groin (which felt only slightly tender) via the tummy incision and then a second section was taken from my stomach. The first transplant “crumbled" bcs of the affects of radiation - and they had to do it over.
I had 17 lymph nodes removed as part of BMX - only 3 were positive but luckily those three had not burst (or whatever it is they do). My PS/surgeon told me they don't know how many nodes they get in the transplant chunk - they just hook up the veins and arteries and assume the best.
My insurance covered it. Happy I did it.
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