Not-so-good surprises in DIEP surgery and recovery?
Hi all,
For those of you who had DIEP surgery, could you share
(1) What are the things that you didn't anticipate to happen that you wish you were told by your doctors?
(2) What are the things neither your doctors or yourself had anticipated?
(3) Exactly how long did it take for you to recover to being fully normal?
I appreciate your input!
Bella
Comments
-
1) I didn't anticipate that the surgeon would have to change mid-operation froma Diep to a "muscle-sparing free tram" (although I remember signing a paper saying that chance existed, it didn't sink into my fear-filled brain - red flags should have immediately gone up - beware any surgeon that makes you sign such a paper.) I also didn't anticipate that my PS would make my new foob so LARGE - it was extremely heavy, fat and flat........took 3 more surgeries (with a new PS) to make it look remotely like my other good side.
I also didn't anticipate that my surgeons would go ahead with surgery even though I presented with a fever (they left the decision up to the anesthesiologist who I had never met - and after a 5 minute exam he said I was "good-to-go"........thus setting me up for the next thing that no one anticipated:
2) I didn't anticipate (nor did my surgeons) that I'd get MRSA in my abdominal incision and have to stay an additional 2 weeks in the hospital (for a total of 3 weeks).Also - no one anticipated that I'd need 2 blood transfusions in the hospital - and no one anticipated that I'd get a large abdominal hernia that needed another opened abdominal surgery to repair.
3) It took more than 5 months to feel normal enough and to be allowed back swimming (my surgery was early March - by August I was permitted to swim - although not at the level I used to swim.)
Hope this info helps you Bella! Good luck with everything - be sure to choose a PS who has TONS of experience and try to talk in person to one of his patients.
0 -
Swimangel,
Wow. Thanks so much for sharing that. This is incrediably helpful. So far I have been hearing all great things about DIEP, but as you had experienced, many things could go wrong with such a long and complicated procedure.
Thanks again,
Bella
0 -
Great questions!
(1) What are the things that you didn't anticipate to happen that you wish you were told by your doctors?
- How ugly I would be after Stage 1 (beautifying and shaping didn't come until Stages 2 & 3).
- I expected I would be bandaged. I wasn't. I should have asked what I would be seeing when I woke up.
- that the one and only goal of Stage 1 is for the tissue to survive.
- That the skin islands from the belly would be so much lighter than my breast skin - thus looking like huge white circles. Very strange to see in a morphine haze.
- That there would be huge hollow areas in the armpit areas - because the mastectomy takes all the breast tissue and you have breast tissue that extends into that area. The tissue mounds don't extend all the way out to fill those areas. I had mastectomy and immediate DIEP.
- That only the residents would be seeing me post-op in hospital. I really needed to see my surgeon. - Gedge Rosson at Johns Hopkins - good guy though and excellent surgeon in spite of this.
- The reconstruction eventually came to look very good, though.
(2) What are the things neither your doctors or yourself had anticipated?
that they would take too much tissue and the abdominal scar would stretch out and not fade. 2+ years later and it is as angry and red and ugly as ever. Very disappointing and disfiguring.
(3) Exactly how long did it take for you to recover to being fully normal?
- I think was comfortable doing just about everything I did before surgery within about 8 weeks (except for some yoga positions - like cobra - couldn't stretch the belly area very well). I don't think I'll ever feel "normal" again, though.
0 -
Wow, these do not sound good. I am looking into the DIEP procedure as well. This might sound horrible, but I want the tummy tuck. But I am worried. I don't want to exchange one deformity for another deformity. My scar is very unattractive. Perhaps if it were flatter I would like it more. It really dents in. I can't even wear a V-neck shirt as this dent shows. Even the surgeon (whom I thought was wonderful) said she wasn't very happy with the cosmetic result. I really wish Doctors would realize that there are people behind these breasts and that this is not any easy thing for a woman to go through.
0 -
Hi, Kathleen - I realize that these posts make it sound like it's all bad news - but it's not - the point of this thread (and I think it's a great topic that doesn't get enough attention) is the unexpected surprises - things we wish we'd known ahead of time.
There are plenty of threads extolling the virtues of the DIEP procedure. How wonderful it is - how "whole" people feel afterwards. This one is focusing on the unexpected - the less than ideal outcomes. Hopefully it's useful - but it shouldn't dissuade you from pursuing your preferred reconstruction option.
The tummy tuck from the DIEP is a nice bonus for many women. (my own view is that while it is nice - it is not a fair trade for real breast with real sensation and I'm a little tired of it being sold to me as such).
My abdom. scar is not a normal outcome - generally speaking. I've had 3 prior abdom. surgeries (major, major surgeries) and in each of those my scar faded to the same color of the surrounding skin - leaving it much less noticeable.
In my DIEP case, I believe (but will never know for certain since it's a rare surgeon who will admit he made an error in judgement) that too much tissue was taken.
There's a video on line that shows a real DIEP operation - condensed - and makes a big deal out of that particular decision point in the process.
I hope other women will add to this thread with their experiences - adding their own versions of "what I wish I'd known ahead of time."
We can never know everything and each case will be unique. We're not allowed to expect perfection - but I think we can expect excellence - ALWAYS. Excellence is CONSISTENT. It doesn't mean that everything is always perfect - but it does mean that a surgeon has consistently good results - not just good results on a good day when the anatomy is as expected and there are no complications.
0 -
I'm scheduled for a unilateral DIEP on 2/28/11, and I just had a CT scan so the ps can better predict if I am REALLY a candidate for a DIEP or whether she will have to do a muscle-sparing free TRAM instead. I'm glad to hopefully know this before anesthesia!
The insurance company gave her a pretty hard time about approving the CT as it is not "standard procedure" but her persistence paid off and finally they did approve it. Now I just have to wait to see what it revealed.
My doctor told me that she believes I will not need a Phase 2. She believes she can approximate my other breast all in the first surgery (I'm small breasted, a small B cup). She said if anything she will "overshoot" the size and have to lipo my foob if it is too big. I wish she would inject extra into my real boob, but not an option lol.
I have really heard that the DIEP / TRAM recovery is significant from a lot of people. Someone just posted on the DIEP thread that she is able to put her own socks on ... on DAY 16!!! Another blogger I read said she could not sleep in her own bed for 10 days. I do not understand why a bed is not as comfortable as a recliner, but I'm about to find out.
Also, my ps said she wants me released from the hospital after 2, or maybe 3, nights. I have never heard of such a short stay, and I'm scared to be sent home in a lot of pain, barely able to move! But she said the risk of infection in the hospital means get out asap. One night in ICU, one night on the regular floor, and home if all is well. ?!?!?!?!?!?!? So scared about that.
I will have my bs, and 2ps's doing the procedure, skin-sparing is planned but not nipple-sparing (DCIS too close to nipple). Choosing to keep my healthy breast, hoping to keep her forever. She was always my least favorite, but now it is her chance to shine, lol.
0 -
Stillhere,
I completely agree with you -- the purpose of this thread is to learn the unexpected. I am sorry I couldn't post earlier because I exceeded five posting per 24 hours' limit!
I had a surgery before, and had two unexpected complications which my doctor didn't prepare me for. So this time around I really want to know this time what are the things that may go wrong. Especially since SMX or BMX with DIEP are large and long surgeries, it is good to know what I might get myself into.
Thanks so much for everyone's input!
Bella
0 -
I think there can be both good and bad expectations. For me, it was all good. I was surprised at how fast I recovered and after the first two weeks, how little pain I had. Stage 2 was a breeze, no pain at all. I was surprised at how l had a lack of energy though--took about 6 weeks before I was really feeling like myself. The assistant to my PS said I was a "model" patient--because it was so easy etc.. So it can turn out better than you expect. Be informed but don't expect the worst.
0 -
Just stumbled onto this thread. I am scheduled for DIEP on March 1. My PS mentioned the possibility of muscle sparing DIEP if necessary. Now, I'm thinking I should tell him absolutely not.
0 -
The best of the best do DIEPs only, with no thought to muscle-sparing trams. CTAs or MRAs are standard, to determine the diameter of the blood vessels. Again, the best of the best can work within these paramets for DIEP (or SGAP.)
I had SGAP, and what was most unexpected for me was the fatigue I had for about 8 weeks post-op. I thought surely I'd be back to my old self quicker than others, because I'm in pretty good shape--but NO! I had some anemia after that knocked me for a loop (I live at a high altitude) and it took me a while to get back to my regular activities of climbing and cycling and Pilates.
Also, aches and pains where I didn't expect them--across my hips from the flap removal. Still a little tender to this day.
0 -
I happened to click on this thread because I'm nosy, and I'm always interested in learning something new: one of the effects of having ADD, I guess.
But a few of you mentioned some angry red scars years later. When I was having my nipples tattooed, I mentioned to the tattoo artist that I hoped the scars (I had T/E, then implants) would fade in time. They have, but not enough to suit me. It's been over a year since the mastectomy, seven months since the exchange. Every time I see them in the mirror I'm reminded of the cancer.
She said she believed that in time they would fade to the point they wouldn't be noticeable, but if they don't, I can come back to her and she can cover them with flesh-colored permanent make-up. I'd never heard of such a thing, but one thing she does, in addition to areolas, is cover up of scars or old tattoos someone no longer wants. (I guess taking them off with a laser can sometimes leave a scar.) She's also had to put this kind of make up on BC survivors who've been torn up by their surgeons. (She wouldn't tell me who's the worst offender; probably legally she can't, or maybe she might lose business. But she did tell me she's never had a complaint about my PS, which is good to know.)
She told me to wait at least six months, maybe a year before making a decision; give my scars time to fade a bit more. I don't know if something like this would help any of you ladies, especially if the scar is raised or dents in.
0 -
Bella - it's good you're doing a lot of research prior to any surgery. Please visit http://www.hospitalinfection.org/ for the 15 steps you can take to protect yourself against hospital acquired infections, like MRSA and CDiff.
0 -
Hi all,
I am 4 weeks out from DIEP surgery on my left side and thought I would add my 2 cents worth.
For the most part I am pleased with my outcome except that I will have to have some revision done later. I was hoping to avoid that procedure.
I think one of the main things no one informed me about was the intense back pain from not being able to stand up straight. At four weeks that is better but not completely gone.
I thought that at 4 weeks I would be able to walk more than 1 1/2 miles but then I suppose everyone is different in that regard.
I have had some depression which I didn't expect but I think that may be from boredom and not being able to do the things I could do before. Patience is not one of my virtues. Also, the jury is still out on whether I am glad I did this surgery. I think once the 8 week period is over and I can start getting back to my "normal" life I will be glad.
Thanks for starting this thread, it has been helpful for me to see what others have gone through.
Ramona
0 -
I had bilateral mx with immediate diep surgery in November. Things went well but still numb around breasts and stomach. Does the numbness ever go away?
Did anyone have liposuction later to touch up and fill in breasts? Going for stage 2 in a couple of months after my chemo is finished.
0 -
I am so glad this thread got started. I felt like I was the only one with unexpected "issues" from diep. It does seem like I must be the exception because everywhere I read ladies are raving about their diep breasts and hear very little about any complications. I have been reluctant to write because I don't want to scare anyone. Overall, my doctors say the procedure was a success.
My surgery was 14 hours. I had a hematoma and went back into the operating room the next day. I had a bladder blockage due to the catheter that was placed at the time of surgery (the most painful part of the whole ordeal). I went home on day 5. From there, it was all about pain meds and drains. I would say my recovery at home was what I had expected.
I did not expect what my foob would look like. I ended up with a flat pancake shaped bcup on diep foob which did not balance with my natural d cup.
I also have extensive blistering around the breast incision that resulted in red/pink scars about 1 inch wide about 6 inches long even 18 mos. after my mx.
About the numbness, I did expect my breast to be numb as a result of my uni-mx. No surprises there. However, I did not expect the numbness 2 inches above and below my belly incision and all around my new belly button.
I am currently in the "process" of stage 2. Here is another surprise. I thought stage 2 was going to be a simple tatoo and fipple. My stage 2 includes an tissue expander under my diep, 5 expansions, a scar revision procedure, an implant exchange operation, fat grafting, a tatoo and a fipple. Stage 2 is different for everyone it seems.
I have full confidence in my ps and I have faith that all this will result in a foob I can live with.
My mx was performed on Aug 8, 2009 and I should be done with the "process" Sept. 2011.
What a journey!
0 -
Wow sounds like you have been through alot. I hope my stage 2 is not as complicated. My ps says the nipple and tatoo are easy procedures and the liposuction is painless. should I be concerned that it will be more complicated.? My ps says I could go to work the next day.
0 -
did the thought of 10 - 12 hours asleep in the operating room freak anyone out? i'm terrified...
0 -
marxi ~ I have heard it is not the length of time you are under anesthesia but the going under and coming out of the processes that are difficult. One of the reasons I declined a diep procedure was the length of time under anesthesia. I went with implant reconstruction thinking it would be easier but I have had to have several redos and each time I had to have anesthesia.
0 -
Hi all,
Sorry for the lack of response for a few days -- I was busy at work. Thanks so much for everyone of you who shared your experience and provided such useful advices as to what unexpected things could happen.
I just found out my MRI results, it seems that there is a linear enhancement of 4cm on the left. I think this would mean it is inevitable I will have to do MX. In addition they found microcalcification on the right which means DCIS cannot be excluded. This could mean I will need to do BMX.
Sometime as I think about the MX and immediate DIEP, my focus has been on how long the surgery would be, how long the recovery would be, what my foobs would look like. I am reminding myself again and again my first priority is to get rid of cancer. With DIEP taking up so much time and effort for the procedure and the recovery, together with possible complications, I don't know whether it is worth it.
What do you guys think? Or maybe I should just be brave and think positive?
Thanks,
Bella
0 -
A DIEP in the hands of a highly experienced surgeon is shorter, more effective, and has a far better result. I chose to travel, as my local guy take 12-16 hours to do a DIEP. By going elsewhere, I was able to have a bmx and diep in 4 hours. I was told to expect 6, but for some reason they were able to shorten it. Experience makes the difference. Having done 1000's is important.
0 -
Hi Bella,
When I first started reading this thread, I thought that perhaps you were too fearful of DIEP, and you need to be strong and assured that you and your surgical team will get you through it with the best outcome!
Yes, it's a long procedure, but so is bc. As I told my 88 year old mother who was terrified of the thought of me undergoing an 11 hour surgery, "I'll be sleeping. It won't be a problem for me. But I don't know how the surgeons do it!" Well, two years later, I still have tightness around my abdominal scar, and my foob scars feel tight in really cold weather. They don't look perfect, but I'm finished! I'll never have to exchange my implants, or go through this again. And yes, I had bc in each boob, so I had a BMX with immediate DIEP. Never looked back and never doubted that I made the right decision for me.
In terms of complications, I almost lost the left DIEP on the second day, but thanks to two dedicated surgeons who took turns checking pressure in the blood vessels in the middle of the night, they saved it. I was in ICU, so that the foobs could be monitored hourly, for four days. But even with that, a transfusion, and the drains.... it was still worth it! If you're really reluctant/afraid to undergo a 10 -11 hour surgery for a bilateral DIEP, the surgeons/artists at NOLA have been known to finish in under 6 hours. It's worth considering a trip to NOLA if it will ease your mind! Good luck!!
Sue
0 -
I had a delayed uni diep in Sept. 2009 and had been out of treatment for 2 years. I studied the procedure and luckily didn't have any surgical surprises. My biggest problem was sleeping when I got home. I don't have a recliner so I used pillows to prop my knees and back and head so I would sleep sitting up. Sleep was elusive. I couldn't wait to get out of bed in the morning. It really helped when I was able to sleep on my side and flat again. That was probably at week 4.
Like another poster, I was not prepared for the mild depression I experienced. My mastectomy, chemo and rads were behind me. Being home again and out of work for 6 weeks brought back many bad feelings. Poor sleep certainly didn't help! It was mild and it did lift when I returned to work. Still, it came out of the blue and I was not prepared to revisit such thoughts.
FYI: I love my diep breast and feel very fortunate to have such a wonderful outcome.
0 -
What I wish I'd understood prior to selecting my DIEP surgeon was that the chief of plastic surgery at a famous university hospital is not the same as an experienced microsurgeon. My doctor may have had 25-30 years of plastic surgery experience, but he was not all that experienced with the exact procedure I was having, and that is CRUCIAL to getting the very best outcome possible.
I wish I'd studied photos from several surgeons very carefully, comparing symmetry, shape, artistry....or viewed their actual results in person.
We didn't anticipate developing an ileus and ending up in the ER 10 days post-op for a double enema because I nothing I tried helped me have that first bowel movement. We didn't anticipate that one flap would nearly die, nor that it would actually survive! He didn't anticipate that I would find a more experienced surgeon to complete my reconstruction because I'd lost faith in him, for good cause. I had a few complications that I blame on some negligence on his part, or the part of the OR staff. After all of the issues, what I really couldn't have anticipated is that I would be so incredibly happy with my result after going to NOLA to have it all fixed up!
I don't think your body ever really returns to the normal you once knew, but you find a new normal and feel pretty good by 4-6 weeks out.
0 -
KCshreve,
Wow. A BMX and DIEP in four hours? This is first time I hear about this short period! My PS from Beth Israel told me it's about 10-12 hours. And they are one of the best DIEP doctors in the greater Boston area.
It's amazing that this can be done in 4 hours.
Thanks,
Bella
0 -
As far as I know BS is doing mastectomy and PS is harvesting fat from tummy. They are doing it at the same time. Double mastectomy takes 1.5-2 hrs and that is more than enough for PS to harvest fat, close abd incision and prepare vessels that have to be reconnected. PS usually have residents in doing small preparations for him. My surgery started at 8 am and at noon it was done, they were closing me up. I was supposed to be out from OR around 2 pm,they called my DH and told him so. Unfortunately, I had clotting issues that nobody was aware of and my flaps kept dying. My PS was reconnecting them 4 times not knowing what could be wrong. At the last attempt he used Heparin directly on my flaps and that worked. He left me open in OR for next 4 hours to be sure flaps would survived. I was out from OR at 8 pm - after 12 hours. During all that time PS was calling my DH from OR telling him what was happening.
I stayed in hospital 7 days, Heparin hooked up through IV with special machines on my legs to prevent blood clots. They were afraid I would develop pulmonary embolism. I was 12 weeks blood thinners (injections) after surgery to prevent blood clotting.
I was lucky my PS was so determined to finish his job. I am more than happy with the results and although I went trough a lot I would go again the same path. Not so sure my PS would.
0 -
Sue,
You are absolutely right. If this is the way to deal with BC, and since DIEP does not require a lot of revision surgeries afterwords (which I hate), I will just do it without much hesitation. My PS teams from Beth Israel are very good, because they are the first who performed DIEP in the New England area, I think I will stay with them instead of traveling all the way to New Orleans. Beth Israel is one of the Harvard Medical School affiliated hospitals here in Boston. Thanks so much for your encouragement!
Wonderland,
Thanks so much for sharing. So my questions to you and all DIEP people are:
(1) Shall I get a recliner? I don't have one at home. If I should get it, what type would you recommend for sleeping comfortably at night? I can't imagine a recliner would be more comfortable than my bed
(2) Depression. I can understand how that can happen -- I feel depressed sometimes even now during the day at work -- and I am not even scheduled for a surgery yet! I will discuss the exact type and possible dates for surgery with my breast surgeon next Wednesday. I would anticipate I will have some level of depression during the recovery period, but my family (parents and my DH) will be here for me, so I should be OK. I think acknowledging that depression is a part of this process could be the first step to manage it.
Good luck with everything!
Sandy, you are right -- some doctors are more research doctors and they are only do clinical work one day a week so they are not as good as someone who work as clinician most of the time. I am glad going to NOLA fixed everything for you.
I agree that a new normality would be established after the surgery and recovery. I think hoping everything return the same as before may be too high an expectation. I will learn to use the new body with its energy level, lift strength, etc, to its best extent.
Thanks so much,
Bella
0 -
Hi Bella,
Yesterday was my 5-week DIEP anniversary. I had bilateral DIEP and BMX and sentinal node dissection on Jan 12th. Needless to say I am physically feeling must better than the previous weeks. Not that I felt bad the previous weeks (I went back to work FT after 3 weeks) but I didn't feel as agile and able to do things.
(1) It's so important to choose an experienced surgeon. I had two plastic surgeons (including Robert Allen) who had done 100s of DIEPS and knew just what to expect. What do I wish I knew before? That my pudgy tummy was not enough for two fully rounded breasts. In some cases, a second, fat grafting operation is required to add mass to the girls so they look more boobish. Other than that, I think that I expected the first week of pain, the not being able to stand up totally straight for a week, not being able to lift arms, the drains.. but after the drains come out (10 days post-op for me) you feel so much better.
(2) Not anticipated - change in bloodwork after surgery that is delaying chemo. Make sure your blood work is comprehensive and you're in good health going into the surgery. 8 hrs of anesthesia takes a toll.
(3) In answer to #3 I can only tell you that I feel very good at 5 weeks - not ready to go jogging but to do some low impact exercise. Usually lifting and exercise restrictions last for 6 weeks.
Good luck to you! Sounds like you're doing your homework on this.
Laura
0 -
Bella,
I did OK without a recliner. The main thing is that you have to keep your knees bent because of your abdomen and and I wanted to keep my breast elevated. It was easy to do in a hospital bed. My bed and pillows were fine - just a hassle at times (pillows shifting, etc). I'm a back and side sleeper and I really wanted to lay on my side! It was such a relief when I could.
I was really surprised about the depression that crept back into my life. All of my treatments had been finished for 2 years and I was pretty much back into the groove. I think it was because I was doing so good and then had to slow down again. Plus, I revisited the reason why I was at home: being blindsided by breast cancer.
You are just starting your bc journey. You will eventually get back into the groove of your life, but it will be different. Accepting the fact that your emotions will be on a rollercoaster will help with depression. If at some point you find that your thoughts are staying too low, you may want to ask your onc for an antidepressant to get back out of the hole. I did half way through chemo and stayed on it through rads. No need to cry every day when I can get some help! And help it did.
You sound like you have awesome support from dh and parents. Use them, cry on their shoulder if you need to, and let them help you.
What you are doing now is the best thing you can do! You are educating yourself about this surgery (physical and emotional). The unknown is too scary. The more you know, the more you can make sound decisions when the time comes to make hard decisions.
Good Luck. We are all here to support each other.
0 -
I bought a recliner because I thought it would be better to be prepared and have one rather than try to manage getting up and down flights of stairs and in and out of bed (although my bed is high). I've been worried about post-op pain and that's now shifted to the thought of being asleep for so long. My PS has done thousands but it still will take 10 - 12 hours to bilateral DIEP (I guess that's the maximum). It seems like an awfully long time to be under.
0 -
Shreve.. I am wondering where you went for your DIEP
0
