2018 DIEP Surgery
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Thank you so much chicks! Suburbs...4th surgery? Gah! My 2nd to take care of the dead tissue, was like my Phase 2, he still wants to do some fat grafting but I want to let them settle a tad to see what we are really dealing with. I still have to have the ovaries out, thinking end of October and he said we can do it during that surgery because he knows my OB/GYN very well and has piggy backed onto that surgery before. Getting back on the table is the LAST thing I want to do right now! Just sitting down and typing this all out, helped clear my head a bunch! Guess I should’ve done that sooner! You are NOT kidding about the patience factor, my goodness! You are all too sweet and I pray for us all, to heal and find some peace
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Finn21, have no fear as everyone is different. I had phase 2 in December and am pleased with the outcome. I had a dog ear fixed, new nipples constructed and the Ken doll cod piece reduced. No complaints. The third surgery was to remove an infected abscess. The fourth and last will be to even out the other dog ear. I’ll have to wait for months but that will be fine
I totally agree that letting it all out really does help. This is a really lovely group, very caring and supportive. My sense is that everyone appreciates what you’ve been through. Keep on healing.
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What in the hell is a “Ken doll cod piece”, are you talking about “down there”under the abdominal incision, otherwise known as a FUPA? ;-
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No crotch bulge here (I think?) , but wondering about how everyone's digestion is going post DIEP.
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I do have the crotch bulge and I'm hoping that goes away. No digestive problems. I wondered if anyone had dry, peeling skin around the tummy incision. I have dry skin to begin with, I'm assuming it's from the skin stretching.
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my crotch bulge went down slowly but surely. For whatever reason it takes that area the longest.
OCDAmy- if your tummy incision is healed, a quick swipe with cetephil lotion across the scar and surrounding area works wonders for the dry skin.
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Finn21, all I can say is I here ya. I am faaaar behind everyone else in my recovery. So much so I kinda gave up on posting becuase no one seemed to be feeling as rotten as I am. You know how a bell curve looks? Well, you and I are the frickin tail. The reply my surgeon (who happens to be over a thousand miles away) gave me was, "Well, everything you're describing to me sounds normal but I guess you're just experiencing it a little harder." Maybe because I've been healthy my entire life and led a very active lifestyle, I had a preconceived notion that I would heal quickly. Boy was I wrong. Thank you for sharing, at least I know I am not alone.
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I will tell you there is more to healing than physical from this surgery. There is an emotional side to healing and I'm dealing with that now.
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I hope everyone can feel comfortable and supported posting, regardless of how their bodies are responding from one day to another to the hell BC is putting them through. No one is alone, especially when they are sad or hurting, and need to share it.
Sometimes I post feeling responsible for encouraging others, sometimes I post super-positive stuff because I am truly having a great day, or because I am trying to convince myself that I am.
I don't tend to post when I have a day when I want to punch everyone in my immediate vicinity for being selfish and seeming to have zero empathy, or when I cry because I can't leave my house because it's been a heat wave, I can't tolerate heat due to neuropathy from chemo, and I can't swim because I still have scabs. Or when I just cry, because. Maybe I should, maybe we all should, for our mental health. And maybe we don’t want to, which is okay, too.
I think people are extremely brave and are engaging in self-care if they need to/ want to post about shitty days, healing issues, anger, sadness, or whatever they think others may not want to read. This isn't Facebook....we come here to talk about cancer, which is horrible, and to share whatever nuggets of joy or luck, or good news that may possibly be hidden in the whole thing.
Love you,
L.
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Hi Team DIEP,
I'm two days shy of 4 weeks post surgery and am reporting in. I've hesitated to post as my story is a little scary (after the fact) but it all had a great outcome. I had the DIEP procedure, a diastasis recti muscle repair, and a lymph node transfer. My surgery lasted 18 hours - about 8 more than expected. Apparently my 4 previous abdominal surgeries in the 1980s (appendectomy and endometriosis) plus a cesarean 17 yrs ago left my left vein "chewed up and congested" so my Dr had to do a vein graft for the DIEP blood supply hook-up. The initial lymph node transfer "crumbled like tissue paper" because of radiation damage so they had to do it again (first nodes were taken from my groin, second set from my stomach). Had a blood transfusion (the NP at my first check up looked at the surgery report and just said "WOW. You lost a lot of blood.") My Dr said that everything that could have gone wrong did and it was the longest surgery she's ever had. My husband said I looked like the Pillsbury Dough Boy when they wheeled me to my room at 2:30am. I stayed at the hospital from Tuesday to Friday. Had a catheter for two days. Was taking only extra strength Tylenol by Thursday, although it took about 10 days before my head finally cleared. Had 4 drains (one on the side of each boob and two on the "cod piece"), down to one lower drain now but it is not showing signs of abating (my Dr. expected this). I've been a complete sloth and in bed since I got home until day before yesterday - woke up and just felt good so I got up, showered, and went to the movies. By the end of the day was almost upright. The first few days at home did feel as bad as my BMX, but that improved. My muscle repair has been the hardest to recover from (I guess in combo with a tight and swollen but smaller stomach) but I decided to take a good three weeks to let everything heal and I think that worked. Taking daily showers and getting back into post surgery garb was my biggest activity. My abdominal scar is still a bit crusty but I've been keeping it moist with Bacitracin and it looks pretty darn good. My boob scars look fantastic - as light pink as my original BMX was after a year. Stomach and pubic area are still swollen. I had tissue expanders and am SO relieved they're gone. I HATED the feel and weight of them. Nothing is slicing into my armpit now but my side boob is pretty swollen from the node transfer.
My biggest reservation in doing DIEP over implants was the possibility of new scars. After my BMX, my scars were only under my breasts and out to the side but turns out she was able to reused the BMX scars and work with my existing pockets. These babies are STUFFED - I'd say they're at least 25% wider/fatter than my expanders and I can feel the "stuffing" almost up to my collar bone (but granted they're still swollen). My Dr. said the more tissue she could add, the better projection she could sculpt in surgery #2. I'm still wearing my hideous hospital bra and a high wasted Marena post surgical side zip panty girdle that is actually more comfortable on that off. Dr. said to keep wearing some type of medical grade girdle thingy for at least 6-9 months and some type of abdominal support for 18 months. It's doable.
I have to say that except for being groggy for 10 days after surgery, I don't think all the surgery fiascos affected me too much and I have to give my Dr. and medical team huge props for the great job they did with what they had to work with. I'm 100% happy with my decision to switch to DIEP.
Also one other win - I was off Letrozole while in the hospital and have been back on for 3 weeks - muscle and joint pain have not returned (knock on wood).
And a funny story ... when the NP was checking my abdominal scar she got a worried look on her face and brought a mirror over to show me an inch long section where the skin was grey just under the scar - she wasn't sure what it was but didn't like to look of it. Was very relieved when I told her that it was the remains of my tattoo. I like to think its tucked up somewhere in my left boob.
Everyone sounds like they're doing great - some moving faster than others but everyone at their perfect speed. Take care, everyone!
Lanne
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Well said, Leatherette!
Vickki
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Hi all,
Sorry Finn about your issues. I did read someplace that having the immediate DIEP as opposed to the delayed which is what I had, does present more complications and issues sometimes, I hope you feeling better.
I am 4 weeks + out now and pretty much normal. A bit slower still but more and more energy daily. My incision is almost completely healed a very small 1/2" in the center of my stomach that is still an intact scab, but the surgeon had cleared me for swimming, no jacuzzi or bath yet. I can sleep anyway I want to now, I was very happy to hear that. Stomach sleeping is still too painful for more than 10 minutes or so, but it does relieve my back when I do. Side sleeping is fine, if I prop pillows under me. My breasts do look a bit uneven and lumpy, my radiated one is definitely smaller and there are hard places near my sternum on both breasts my PS told me to massage, but he can fix it in the revision. My stomach incision is quite ugly and much higher than I expected, the PS thinks it might release some before the revision, but if not he can do more revision on that as well. My belly button is not round, it is vertically long and that is not pleasing to look at either. I forgot what he said about that, but will bring it up again when I see him in September. He is thinking my revision will be some time in October. He wanted to know my thoughts on nipple construction and I told him, I liked not having to wear a bra, and a constructed nipple would required me to wear a bra to look presentable, a tattoo would not, so I might opt to just have a tattooed nipple rather than a 3-D constructed one. My MO is prescribing Nerilynx immediately, so I hope I can continue this recovery before it get worse from those side effects...
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Lanne, so glad to hear from you. I'm so sorry to hear about your long surgery but it does sound like it was a success. I'm curious about the node transfer. Were you having lymphedema? Has the node transfer fixed it? Wishing you continued healing
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carmstr- I kept my nipples, and they’re the reason I wear a bra. I like the idea of just tats.
Lanne- what a long road! Glad you’re doing well!!😊
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Re node transfer - I have had a bit of swelling in my cancer side upper arm. Not major but definitely there. It is about the same now, post surgery. I asked my MO how successful the surgeries were and he said they're not sure yet as it's relatively new. I think the upside is worth it and hope to see improvement after the surgery swelling goes down. I think I read somewhere that it can take up to a year to see final results.
Right after surgery my whole arm was very swollen but elevating it with pillows fixed that. Before surgery my tissue expander and frozen shoulder hampered normal movement and I think that contributes to swelling. Radiation, too. I'm hopeful that if nothing else, it doesn't get worse. If so I'll consider it a success
When I first met with my Dr to discuss DIEP, she measured my arms and just stated transfer would be part of the surgery, along with my stomach muscle repair. Insurance covered it all so I was up for it. No post op pain or discomfort from the transfer. I still sleep with it elevated.
Lanne
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Lanne, sure hope it helps. So far I have not had lymphedema and I am keeping my fingers crossed. One weird thing I had not thought about but am noticing now...I have a few random hairs on my new breast. Gross.
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I have a couple of questions for you ladies that are months out from surgery.
I went camping this weekend and my belly scar was hot so I decided to place a bandana of ice cold cooler water on it. I know some of my stomach is numb but didn't realize the extent. It was a bit frightening feeling absolutely nothing in the center portion of my stomach. I also realize a lot of pain comes from this part of my stomach. When here I thought if something had no sensation it wouldn't be causing pain. Does that make sense? My nurse said it could take years to come back. Has anybody had numbness go away and how long did it take?
Also, do any of you ladies feel like your new breast is "tacking" itself higher up around the armpit? If I extend my arm all the way up the tissue feels almost stuck up there.
Oh one more! For those of you who went out of town for your surgery, did you do a phone pre-op for stage II? It feels like a big disconnect.
Thank you as always!
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Parachutes, I am six months post op and still have numbness. The breast will settle, especially after Stage 2. Be sure to communicate issues you want addressed in Stage 2
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Parachutes,
I don’t know that my breast moved when I raised my arm but I definitely had side boob (my PS even referred to it that way). In my follow up surgery my PS removed a good bit of that fullness. When we planned out what to address he commentsd that removing the fullness is simpler than adding. Two weeks post stage 2 i like that my breasts look more alike in fullness and position. I will say that the pain/discomfort from liposuction is more than I anticipated. Hopefully it stops being at the top of mind in the next few weeks.
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Noticed that my DIEP breast is jiggling! LOL! After more than a year with rock hard TEs, it was so great to see some life back in my breast.
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OCDAmy, Thanks for my first smile of the day 😀
Vickki
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OCDAmy, Yes! Yay to jiggling lol.
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love jiggling
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OCDAmy That is very encouraging to hear and also made me smile.
My surgery is next week and I am getting so nervous. I know this is goimg to be rough and long process I just hope I will feel it is all worth it. I feel that I have pretty realistic expectations but starting to feel a lot of anxiety. Any enoiraging words or advice are very welcomed. 😊 Thank you all.
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OCDAmy-laser hair removal should be covered by insurance for those pesky hairs as part of the recon process. Many PSs have the machine in office and will take care of doing it and filing with insurance. I’ve done it just about everywhere (super dark hair and very light skin just don’t mix well no matter what Snow White admirers say...you never saw her legs and I swear she waxed her arms-LOL!)
Parachutes- out of town pre-op for stage 2 was day before surgery for me just like stage 1. Actually I met with PA day before and discussed my concerns as PS was out of town.PS came in morning of and did the markups and final discussions on what all would be done literally right before surgery.
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Not having surgery now, but had DIEP in 2007 when it was fairly new. Dr. Michael Zenn at Duke University in Durham NC did mine, He did a fantastic job, (IMO) and I have had ZERO problems with my new breasts since. I will readily admit, and told him at the time,he's an awesome surgeon and a lousy tattooist. When he rebuilt my nipples, they wouldn't stay, and healed flat and non existent again. He did the original Tattoos, and they faded to nothing in about a year. I went back to a friend who does tattoos for a living, and she redid them, and now the doctors are amazed they are tats and not real. She did them "3D" and they are amazing. I did have an issue from the flap site last time, my belly button area wouldn't heal and I wound up having to have revision surgery a couple of times. I'm now left with a scar, but after 12 years, its faded, I have a permanent 6pack it what it looks like. LOL
My question, even after a double masectomy and DIEP, my cancer returned, they did a lumpectomy this time, both sides, so I am real uneven and weird now. What kind of reconstruction can they do on a reconstruction? Anyone have experience with that? I had one doc say a fat transfer, lipo it out of one place, inject it in where needed. I just don't know how that would work.
Thoughts?
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Ann63, good luck with your surgery. Being so many years out from chemo, chances are it will be much easier for you. Anxiety is normal. I remember at some point I just had to jump into th deep end of the pool and know everything would work out.I hope you get there too. All the best.
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I'm coming into the final countdown for my surgery. I call it my Picasso make-over since his painting always looked like parts of the body were moved all around. I've gotten quite the belly with the AI's I'm on so I guess I'll have pretty good breast size once all is done. Twills - we have the same doctors so I'm praying I have the outcome you have. I go in for pre-op, blood work, and meet with the physical therapist on 9/4 - surgery is 9/10 and I'm seriously praying everything goes ok.
My BMX was 1/30/17 and after I got my drains out I really did okay. I know this isn't the same - and there's a lot more to it - but geez I just hope, hope, hope it goes okay. Some days I just think I should go flat and not bother - it would be so much easier. But I think I'd regret it later on so I've got to do this now.
Well, enough of all that - just wanting to stop in and thank everyone for continuing to post - the good, the not so good, and the unexpected. It really does help.
Michele
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Thank you suburbs for the encouragement. 😊That is my hope that being so far from chemo and everything will be to my advantage. Although I have heard that those who do MX and reconstruction at the same time mostly have a better outcome as far as looks but I'm not as concerned about that and too late for that anyway. Plus with the radiation back then they wouldn't consider doing anything until I had healed from the radiation.
Shellybeans I can totally relate to what you said. I have gone back and forth off and on over the past several years and thinking going flat would be ok but just didn't get better for me. So I'm going for it now. Praying all goes well for you.
I too am so thankful for everyone's postings. Seems like I learn something new everyday. Never thought I would need electrolisos on my foob but good to know they can do something about it and insurance will cover.
Onejeno so sorry to hear you had cancer come back after all of that. I hadnt heard of getting cancer in the DIEP but I guess there is that possibility. I have read that there are certain PS that specialize in revisions of reconstructions. I'm sure there are some in your area. There has to be some ladies in this community that have had experience with this too. Thank you for sharing about the 3D nipple tatoos. I have seen pics and they look really good. Only thing for me is that I would have protruding nipple on one side.
So I'm thinking anout the 4D but that is down the road a ways. Hugs and best wishes for all the strong and amazing women here. 😍
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Hi ladies,
I am in desperate need of information. My surgery was July 3oth. I'm 16 days post op. I'm recovering well except that my abdomen is pulled so tight that I am miserable. The first week, I was able to eat small amounts of food throughout the day without issue. I was eating less than normal, but I felt fine. For the past 4-5 days, I can only tolerate a few bites of food at a time. After eating, my abdomen becomes extremely bloated. I am very uncomfortable for hours. This evening, I ate 2 1/2 ounces of a grilled pork chop & have been miserable ever since. For the past several days, I'm only able to eat 400-500 total calories & about 1500 ml of water each day. Even with the reduced amounts, I'm miserable all day. I've lost 10 lbs in the last 4 days. I'm eating mostly protein & I've eliminated sugar, caffeine, & gas causing vegetables. I've tried Beano, Gas-X, Probiotics, etc... without any relief. I'm no longer taking pain meds except for Tylenol & Motrin & continue to take Colace resulting in daily soft stools. I've read about "swelly belly" & how some ladies never get relief. That it ends of being a chronic problem. Have any of you experienced this issue? How long does it last & what is causing it? I'm a very strong person, but the tightness in my abdomen is so bad that I cry everyday. I can't imagine living the rest of my life like this. Also, for those of you who had you abdomen pulled too tight, does it eventually stretch out or get better? If not, is there anything a surgeon can do to release it? Thanks in advance for any information.
PS - I went in for DIEP, but PS ended up taking a small amount of muscle on each side surrounding the vessels (if that matters).
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