2018 DIEP Surgery
Comments
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SadieSue09, thanks for that. I may take you up on it. :
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Hi everyone,
A first post after quite a lot of lurking in this community, which I've found v useful. I had a delayed DIEP flap reconstruction on Saturday with a v reputable London surgeon as an NHS patient. I'm quite sore and tired and have very crampy bowels, for some reason, but I think I'm probably doing relatively well so far - I managed to go home with a couple of drains (one now out) after 3 nights in hospital, and I'm moving around fairly normally at home between quite long periods of rest. I wasn't given particularly detailed discharge advice and would love to check out a couple of things with others who have been given more thorough counselling. One is about walking around - I hunched over the first time I got out of bed, but since then have felt OK to walk around upright - have people been told this is a problem? I'm also contemplating going for a short walk today (day 5 post-op) - am I overdoing it, according to advice people have been give?. I'm just sleeping in my bed normally (though not that comfortably) and am also wondering if I'm doing myself harm by not being in a recliner!
I'd also be fascinated to know what people have been told about bras, and whether you know if there's any evidence. I was advised to buy a sports bra that gives good support and have done so, but it does feel tight and uncomfortable against my bruised skin, and I do wonder if it's actually harming the blood flow. Have other people been told not to wear a bra, and if so are you wearing anything else at all on your breasts? Would love to hear thoughts, thanks v much!
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TWills....I’m at 5 weeks + 1 day today since my surgery. I admit the bending over part to me was really tough in the beginning. It made my back hurt terribly. So at two weeks I started standing up straight. I kept trying to MAKE myself hunch over but I could not make myself so I was walking straight pretty quickly. However, just this past Monday I had to work. I had to stand up for 5 solid hours, and the pain in my abdomen went from a level 2 when I started to about a 7. I wondered if it was because I was not hunching over? There was a tremendous pressure on my incision. I also get twinges of pain in my abdomen and my sternum. During the day, I’m actually doing really well! I’ve been super active, running up and down stairs, walking my dog in the hills, driving a lot and working almost every day. But I get pretty tired at night so I took a rain check on my 60th birthday yesterday!
I did find out that my PS cut through my ribs (Thank GOD for you ladies or I would never have known to ask him), which is probably why I am still having pain in my sternum. He had to cut through the lat muscle from the past reconstruction I had so it took more time. I had a 12 hour surgery with two surgeons.
Just_me2....hang in there! Even though I never had kids, I hear it’s like that. Going into surgery I kept thinking...”Holy Sh*t! What was I thinking??? I changed my mind!!” Admittedly, the first two days for me were tough but by the third day, it was getting better, and continued to get better every day. I’m even ready for Stage 2!! Let us know how you are doing. Ask lots of questions and keep using this wonderfully educated group of women.
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Welcome diepinlondon!
I have to go to sleep so this will be brief (well...I tried making it brief but I failed miserably). I wanted to say that I did not hunch over for long and I seem to be doing fine. I have not hunched over since a week after I left the hospital. The thing about this surgery is that everyone seems to heal differently. I do have a bed that moves up and down so I have been sleeping in a V position. I was way more comfy than trying to sleep flat. I’m actually still sleeping with my head and feet raised. I posted about this in my last post but I forgot to mention that I NEVER went without wearing my binder. I slept in it and That truly made all the difference in the world. After my week 4th week appointment they said I could switch to spanx, which thankfully made it much easier to dress!! But the binderplannning on a second stage surgery?
As far as bras, they sent me to buy a “Post-Op” bra. Just awhite cotton, no support. It has two buttons and a little Velcro tab to hold it together in the front. And it is bigger to allow for swelling right after the surgery. I’ve also been wearing this every day and night. At four weeks, he said I can wear anything except an underwire, because I think they are afraid ifvblocking blood flow. I an just looking forward to Stage 2 because i’m at least one cup size different (I think I am a B On the left and a C on the right). : /
Hardest part for me to was knowing when I was over doing something. I walked in the first week but not far. Everything around me is either uphill or downhill so I waited for about 3 weeks .But I did walk out to the garden and wander around. Trying to not reach too far for things, not lift anything over 5 pounds, and not drinking coffee or tea were my hardest challenges. Luckily my PS said I’m healing fine so I guessI did ok. I’m sure they stipulated these guidelines and that there might a teeny bit of wiggle room, but for the sake of safety, they ask everyone to adhere to them.
You’ll do great! Just keep coming back to this wonderful group. They have given me WAY more information than my surgeon has!! Correct information!!
Sending you good healing thoughts??
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I just wanted to share the info on this page from a plastic surgeon. I think it answers why we should stay hunched over as much as possible, and why we should sleep in a “V” position.....
It makes sense that it has to do with the pulling on the abdomen and creating a worse scar:
https://www.pacificplasticsurgery.com/scar-tension-problem-and-solutions/
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I’m going to post photos of my post op instructions. It’s based on 3 phases, 0-2 weeks, 2-4 and 4-6 post op. Every Dr is different but these were mine and I would have loved to see these much sooner before my surgery so I could prepare. In 4 weeks out today, standing upright in the morning but kinda hunched as the day goes on, no pain though. Hope this helps.
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Hi DIEPinlondon. Walking is very very good. Don't over do it but try to do it frequently. I had caretakers that made me get up intermittently and walk. If you are home and walking, then you are doing great.
I did not wear a bra for weeks and even now only wear one when I go out. I had to buy stretchy loose bras just for appearance sake. Every PS has a different set of instructions. Some insist on abdominal binders and post surgery bras and some don't. There seems to be no consensus on the topic. Best wishes for a speedy recovery
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TWills, brilliant. What a great post. Until I did PT, I did not receive this kind of detailed information about how to proceed. This is great advice
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DIEPinLondon- if you have a recliner definitely try it. Sleeping in a bit of a V helps the incision and helps to get comfortable tremendously. If you don’t have a recliner to sleep in, prop a bunch of pillows behind you in the bed so you’re semi reclining, put 1-2 pillows under your knees and if needed a little pillow under each arm. No side sleeping for 6 weeksminimum and no tummy sleeping for 8 weeks minimum. No sleeping flat for 6-8 weeks. I would also put my feet up anytime I was sitting anywhere other than my recliner often with s pillow under my knees. On the bra- if it’s too tight it could impact blood flow. The company anaono is in your area I believe. Their full coverage pocketed and front close bras are perfect post DIEP and even got an ok from my doc in NOLA post surgery (stage 2). And they are super soft too. I’ve posted links to both below. The only other thing I can think of that hasn’t been covered is to make sure to shower backwards-don’t let the water hit your chest directly. Allow the soapy duds to slide over the incisions or simply pat the incisions gently with a soapy washcloth-don’t rub or scrub them.
https://www.anaono.com/collections/mastectomy-surgery-must-haves/products/pocketed-front-closure-bra
https://www.anaono.com/collections/radiation-therapy/products/pocketed-full-coverage-wirefree-bra
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Fabulous stuff, thanks v much indeed! Much more detail than I was dispatched with. There really seems to be a lack of consensus on the bra thing then? I wonder if anyone has ever done a study? They got me to get quite a firm control sports bra, but I do feel as if it cuts into me which doesn't seem right. I have just replaced it with a much softer front fastening cotton post-mastectomy bra that I had. Does anyone know what purpose the bra is actually supposed to serve post-op? Apologies if going over old ground, such a vast number of helpful posts that's hard to know where to start.
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bra is supposed to help with shaping and give light support to the tissue so it’s not pulling against the sutures.. They basically tack the tissue down when creating the new breast mounds. You don’t want anything compressing the blood flow or pulling against those sutures inside and potentially separating the chest wall and the flap.You want everything to stay right where it is and adhere to the chest wall with plenty of blood flow to keep the tissue healthy and alive.
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DIEPinlondon - congratulations! I walked upright quickly, walked outside from the first day out of the hospital, slept in my own bed, etc. when I asked my doctor how to behave he encouraged me to do what felt good. Plan to be tired but moving around was better than not. I was instructed no bra of any sort for 4 weeks. I just wore loose tops and layers. Bought super soft bra when i returned to work at 5 weeks.
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runrcrb, wow...that's the best post op experience I've read! I hope you don't mind me asking, but where did you have your surgery done? And when? Dawnann
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I'm back! Stage 1 reconstruction was successful. After discussing my various donor options with Dr. Levine and Dr. Allen, I decided that they could take my saddlebags. I sure wasn't going to miss them! So, I now have new breasts and two 8-9" scars on my outer thighs where my saddlebags used to be. The breast reconstruction surgery I had is called lateral thigh perforator flap or LTP. Since this isn't a surgery that I've seen mentioned in the forum, I may copy this post and create a new post for future members.
My surgery was on March 19, and I was discharged from the hospital March 22. The two breast drains I had were removed prior to my discharge. I was walking around the day after surgery, walking the hospital hallways on days 2-3, shopping on day 4, walking around a mall on day 5, and walking 4 NYC blocks on day 6. On day 6 I traveled back home and have been doing as much as I can around the house. On day 8, I stopped using the little pain medication I was using.
My thigh incisions are pretty tight, so I'm hoping they loosen up soon. I'll have my thigh stitches removed next week (or at least every other stitch and then the following week I'll have the remainder removed). I still have 2 drains in my thighs that are still pulling quite a bit of fluid. At this rate, the thigh drains may have to stay in another week or two.
From what we can tell so far, stage 2 (which I scheduled for June 1) will involve smoothing out a lump near the end of my right thigh incision using liposuction and possibly fat grafting to adjust for breast size differences and any fullness issues.
Overall, I am happy with my decision to go with the LTP surgery instead of PAP or SGAP. With my LTP surgery, I wasn't sitting directly on my thigh incisions. I can imagine that I would have had more pain with PAP or SGAP, since those incisions would definitely have had much more contact with sitting and sleeping.0 -
Good morning!
So I have a strange question for you all. I was supposed to have BMX directly to DIEP last month and because of a positive node have TEs instead and will be doing DIEP later this year.
Yesterday I had my 6 week follow up of the BMX with TEs and the Nurse Practitioner(w/25 yrs experience) said — so tell me why you have these strange scars- stitch lines?!? Well seriously .. I thought this was normal! My scars look like a capital T on each breast with the top line a little wider than nipple width. (I did not have nipple sparing) She said typically there is no scar going down only straight across. Can this be because I am doing DIEP?
What did y’alls scars look like if you had TEs before DIEP?
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teaberry- yes it's because you're doing DIEP. Most BSs will just go straight across especially if you're not having skin sparing. It's quicker when you have to sew the nipple areaback together. The route your surgeon took should leave you with a smaller scar area that can easily be covered with nipple recon/nipple tats and the straight line scar down fades really nicely. Doing it that way also helps eliminate a banded look across the middle of your entire breast from one incision and scar tissue. And since you were supposed to have immediate DIEP, those were the incisions that were already made he made use of them. Once all is said & done, you either won't be able to see any scars or they will be very slight and someone would look at you topless and assume that maybe you had an augmentation. Kudos to your surgeon!
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Thanks v much for the pillow under knees advice - a significantly more comfortable night with four pillows under my head and two under my knees. Also today, one week post-op, I went to a pub for lunch with my husband and son and then walked home - around a mile! Beginning to feel surprisingly normal, even though my body looks like a battlefield of stiches and bruises. Had an hour's lie-down after the walk though.
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so glad the pillows worked for you diepinlondon! It’s great that you’re starting to feel more like yourself again. It will come, just remember time is your friend to get there.
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Thanks! An awful lot can obviously still go wrong, but I must say one week post-DIEP op, it's not as bad as I feared. I've had something approaching a normal Saturday, albeit a quiet one that will be followed by a very early night, I'm only taking paracetamol, and I'm only a little uncomfortable. Fingers crossed that this continues, and that others with upcoming surgery will likewise feel it's better than you expected!
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Hello Diepinlondon, Happy Easter!
So pleased to read your recovery is going well after such a short time too. That's great you only need paracetamol now. One of the worst things for me after surgery is the constipation from strong painkillers. Chocolate Easter eggs + constipation wouldn't be a good combination!
It's so interesting how varied recovery rates seem to be and this is just one of the most useful things I'm learning from this site. I'm also in London and also considering a delayed DIEP flap. I'm seeing a surgeon at the Marsden next week. I'm just wondering if you could tell me who your DIEP surgeon was and where you had your op? Was your op unilateral? If so will you be having any surgery to match the other breast?
I hope your smooth recovery continues and you can enjoy the Bank Holiday now it has finally stopped raining!
All the very best to you and all the other brave women in this wonderful site.
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I have been dealing with a little drama.......I am having delayed reconstruction so have not had anything done except my BMX. I recently felt a lump and of course panicked. I made an appointment with my breast surgeon and she also felt the lump so she immediately ordered an ultrasound. I was appreciative that they were acting quickly and I would know my results immediately. Turns out it was just tissue which was a great relief. This brings me to my biggest reconstruction fear......I can now feel anything quite easily but once reconstruction is completed this will become more difficult. When I asked how I will be watched I was told just my regular self exams and twice a year professional exams. This scares the crap out of me......so much that I have even considered staying flat.
Justme2 how are you doing?
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Heather12 I will pm you exactly who and where as otherwise it all becomes a bit too identifying, but it's a major London teaching hospital with a surgeon with a high reputation privately as well as in the NHS, so I feel quite fortunate, as I imagine you would be at the Marsden. I have had a delayed unilateral DIEP with the other side lifted and reduced a bit at the same time - the surgeon felt she needed to do this to get a good result, and I am quite impressed with the shape I've come out! She says she'll need one more go for the final result, but that that will be much less disruptive.
I debated a lot last year whether to do immediate or delayed, but did delayed partly as I wanted to minimise life and family disruption at the time and in order to lose some weight and be as fit as possible pre-op - I have made reasonable efforts at this, and feel as though the conditions for the operation, physically and psychologically have been pretty good at this time, so that I probably was right to go for delayed. It does seem as though recovery time from this and other operations varies greatly, as you say, and probably in a way that's not that easy to predict.
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It sounds like everyone is progressing well. I have a question, though for those that have completed phase 1. I live alone and do not want to inconvenient my brother by staying at his house again like I did when I had my BMX and getting around is not going to be easy the first week. Did anyone ask for home health care? They can prepare a meal or 2, help with grooming and bathing. I have insurance that would cover this if it is medically necessary. I am quite concerned about how I will get through the first 2 weeks.
The requirement for my insurance is a medical procedure that needs to be over seen by a nurse. Could the tubes I will have be something that is medically necessary to be over seen? Or perhaps having them removed? My surgeon requires me to fly to him for the surgery the day before and the plan is for me to stay at the hospital a full 7 days before I go home. I am thinking they may remove most of the tubes before I leave but that will still leave the stomach tubes that will need to be stripped twice daily and then removed. I don't think I am supposed to return for 2 weeks.
Did anyone ask for a home health care aid?
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I didn’t have Home health but I would have needed it if I wouldn’t have had round the clock help for the first week and a half to two weeks. Could I have survived? Yes, but I would have had to disregard a lot of the post op instructions which isn’t good.
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Speaking of home health---is it hard to get approved for? Insurance wise...
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Greeneyes,
My insurance company told me if my surgeon prescribes it, it is a covered benefit. However, they told me a visiting nurse for medical reasons is a requirement for home health. If you don't need a nurse, then you can not get the home health care either. I will need help bathing and probably cooking, unless I can pick up a small microwave to place on the counter. I can't reach the one above the stove unless I raise my arms too high. I might need a nurse to help with the drains, if they are still in when I go home. I hope I can at least get up to go to the bathroom by myself, but not sure. When I had my BMX my brother helped me a lot. I plan to call a fewhome healthcare organizations in network for my insurance company to find out more about the requirements. I will post when I know more.
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I have some updates. I was told to get home health care is very hard. My Dr and surgery is not in my own state and a health care aid or home nursing can not be ordered by an out of state Dr. I will need a local primary care physician to order than care, but I was also told they only cover 1 -2 days a week. Skilled. Nursing care can be ordered daily, but not home health care. I will need daily care that would require out of pocket expenses, and not covered by insurance. July is a rather warm month. Surgery scheduled for July 10,And I do not have air conditioning and I believe a daily shower will be imperative to keep my a surgical sites clan in and healing.
I have a few more leads to follow before I give up. I am a veteran, and it is possible the VA might have some option for me. Otherwise I will have to depend on others to care for me. And that is not something I am comfortable doing for an elective surgery.
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Don't think of this as elective surgery. You have every right and need to get back to a physical self that makes you comfortable.
I didn't need a lot of help after surgery. Mine was single though and I was otherwise healthy and fit going in. But, I did allow others to bring me food and drive me to the doctor until my drains were out (day 10).
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Carmstr835,
I am a single mom who is also stressed about taxing others as I will not have anyone around the clock, but have friends who are rallying to help (and luckily include healthcare providers). I'm not sure where you live, but in Massachusetts there is a wonderful nonprofit that provides assistance in all the areas you describe (and more, like massage and acupuncture), open to anyone, regardless of financial status. Please check out the Ellie Fund here:
https://www.elliefund.org/for-patients/
Perhaps you have a similar nonprofit in your area. Here's another that provides cleaning in your home. You may need your social worker/care team to advocate but I would hope your primary care doc would do that.
http://cleaningforareason.org/free-home-cleaning-services-for-cancer-patients
There must be more nonprofits, Google for your own region.
Good luck, we'll be thinking of you
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Good evening ladies,
I've been thinking a lot about everyone's recovery time. In y'alls opinion, do you think having a MX and a TE placement first then the DIEP surgery would lend to a quicker recovery than having a MX and the DIEP at the same time? I'm wondering if not having the trauma of removing the breast tissue makes anything different or is that wishful thinking? Good lord, I'm not looking forward to experiencing the breast pain and loss of ROM all over again.
Have a peaceful night.
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