Hi I am due to have diep reconstruction following mastectomy back in 2016. Surgery was delayed due to chemo and radiotherapy. Surgery is booked for March and I am looking for advice on things I might need following surgery I have seen mention of special bras and knickers etc . In essence any tips and advice would be very much appreciated as I haven’t spoken with anyone who has undergone this type of surgery.
Hi Sarah,
I had a double DIEP op in December 2015. I took support pants and front fastening soft bras into hospital with me. Took a couple of days for me to be able to wear the bras, but the pants were an absolute god send. All my pj’s were front fastening too because of being constantly checked by nursing/medical staff. Means you only have to open the buttons rather than constantly pull your top up (a godsend in the middle of the night!!) All the best with your op and wishing you a speedy recovery. Big hugs, Ann X
Hi Sarah. I was a tad unfortunate in that I got an infection post surgery. Ended up in hospital or 12 days instead of the expected 5-7. But this doesn’t happen to everyone, and I was unlucky, so please don’t think this will happen to you. When I got home I needed help to shower and change dressings, but other than that, I felt quite good. Within a month, I was feeling pretty normal, although my wounds took a while to heal and I did have have quite a few surgical clinic appointments so they could keep an eye on them. I didn’t drive for 6 weeks post surgery and returned to work in the first week of March, so did need almost 3 full months off. I’m really happy with my new boobs and am really glad that I had this procedure done. I know 2 other ladies personally who had this procedure, and we all had about the same recovery time as far as driving and returning to work is concerned. And please remember that this op takes a lot out of you, so be kind to yourself for the first few weeks. You may well be exhausted by menial tasks to start with, so take your time to rebuild your physical strength a day at a time. I walked every day, venturing a little further each time. Hope your op is plain sailing and that you’re as happy as I am with the outcome. Ann X
Hi Sarah
i had a bilateral mastectomy with diep recon last August.
As far as recovery think everyone differs but would allow yourself at least 3 months maybe more driving for me was 6 weeks as per my insurance company
I found the first night the hardest as I had a Bair hugger heated blanket and it was so uncomfortable and hot, a real help was taking in some flannels with me that I asked the nurses to wet every hour or so and put them on my forehead and neck to keep cool.
at home I needed help to showe etc as with a double you can’t do much as you can’t lift your arms.
if you take the painkillers make sure you get laxatives with them from the nurses as you do get constipated on codeine.
you will feel tired even doing the smallest task at first but it passes after a few weeks.
another thing I found really useful is that one of the nurses rolled up a small towel and taped it into a roll for me to put on my tummy scar area if I felt the need to cough as it can be quite painful to cough at first.
You will feel you will never be able to walk out of the hospital unaided in the first day or so but it does get better and you will.
which hospital are you at?
good luck
SL x
Hi Sarah, I had my DIEP surgery 4wks ago and my experience so far is as follows:
- meds: I was discharged after 7 days with codeine, paracetomal and ibruprofen however I stopped the codeine immediately as it was causing constipation…as well as senna tablets one of the surgical team recommended eating kiwi fruit, which really helped (apparently other fruits are too bloating). Since then I’ve been coping fine with any pain by taking the paracetamol and ibruprofen twice a day.
- bras/underwear: I was told by my nurse on the plastics team at the Royal Marsden in London that I would need to wear high-waisted support pants and a front fastening maternity/sports bra post-op. However when it came time I found even trying to get the support knickers on so painful my surgeon said I didn’t need them and that if you’re a “smaller” build there isn’t a need for the support pants (although I’m guessing every surgeon has his/her own protocol for patients).
- wound care: once discharged I was told to cover both the breast and abdominal wounds with brown surgical tape (flesh-coloured micropore) and to change the tape every 3-4 days. About 3wks post-op most of the wounds were healed sufficiently to begin massaging them with a basic moisturiser (I used Aveeno). However, there is a small area at the centre of my abdominal wound which is stubbornly refusing to heal (I’ve been back to hospital a few times to get this looked at) - apparently it’s not uncommon and tends to happens if the surgeon has maxed-out on the amount of tissue they’ve taken.
- I found I only started walking straight and upright about a week ago (3wks post-op) as before this it was too uncomfortable to straighten up, so don’t worry if you’re still walking around like a little old lady a few weeks post-op!
- The first week out of hospital is the hardest physically so don’t be surprised if you’re not doing anything more than moving from bed to the sofa and back again. It’s important to take things very easy - I live on my own and even though my mum came to stay with me for that first week it was still very daunting being home initially. 4wks post-op I’m still not supposed to be lifting/carrying anything heavier than a 1.5l bottle of water, which is very frustrating but you learn to adapt.
- Before you go in for your op do make sure you’ve prepared your home for your return - plenty of pillows in position on the bed to prop you up; a rolled up towel to help when coughing/sneezing; items that you use regularly within easy reach/waist height; if you have a walk-in shower get a cheap perching stool to sit on when showering (i found that very helpful during my first week home)
- Arm exercises: do do these as religiously as possible as it’s the best way to avoid muscle tightness or cording.
- If work/family life allows, do take as much time as you can to recover - it’s easy to forget this is major sugery not just a “boob job”. Pre-op I naively told my employer I would aim to be back in the office in 4-5wks; however it’s very clear to me that I will need more like 8wks before I can even contemplate work. I was told I’d be fully healed in 3mths and my body will feel like my own again by 6mths.
- Depending on how much tissue your surgeon is able to harvest there is a possibility of needing 1 or 2 smaller “top-up”/refinement procedures 3mths post-op. I’ve already been told I’ll need this as I didn’t have enough tummy fat to fill out the breast (and I didn’t want an implant) but that the procedures are day surgeries/overnight stays.
There may be times post-op you feel weepy or dispondent (I certainly did about 10days post-op) but it does get better and means you’re another step closer to putting all it behind you.
Yasmin x
6 Likes
Hi Sarah,
I didnt get to Bossom Friends as not feeling upto it. Decided to think about the nipple recon when im over the recon. One thing at a time …
Like you, i wondered what to take into hospital so i rang and asked my surgeons sec to ask. She gave good advise, usual toiletries, full knickers (i bought sainsburys own cheap ones). No girdled required for me but maybe you should ask about this as many on here seem to have needed one of these.
I asked my surgeon about this & he told me that they way he stiches doesnt reqire a girdle ? they really are progressive & fantastic at BRI.
Bra cropped tops. I brought 2x m&s pack of 2 £14.
Loose top & pants to go home in.
I took a front fastening nightie rather than pjs but didnt wear it. Just wore the hospital one as doctors need easy access as will be checking new breast contantly. I didnt have the energy to bother wearing my own.
I too care for my mum and made provision before the op for her to be looked after whilst i recover.
Also my family have stepped up whilst i take a back seat. Hope you are able to do the same Sarah.
One the first day i was totally out of it. My surgery was an epic 12 hours. So no visitors needed. The surgeon rang my family when op complete.
2nd & 3rd day still pretty spaced out but my husband came to see me. I decided not to let my children visit till i was out of high dep & on the ward.
I was stood up and walking slowly by day 4 and discharged on day 5.
The first week at home is a bit of a blurr. I slept alot. 2nd week started to move around a bit more.
Ive got better and better since. Trying to walk out every day (weather permitting!). Pottering about, cooking etc…
6 weeks post op & im getting around ok, not driving yet or lifting anything heavy tho. My body really letting me know when ive done too much.
Planning on going back to work after 3 months but only if im fully recovered.
I was very fit & heathy before the op & i have a supportive husband & children which really helps.
Sarah the procedure is a tough one am not guna lie so dig in. Keep the long term & summer in your mind and good luck.
Hope this helps.
CJ ?
Its tough Sarah im not gunna lie to you but i am totally overwhelmed by what Mr Williams had been able to do for me.
Hi Sarah. I had a bilateral mastectomy with diep reconstruction 3 weeks ago in whiston hospital liverpool. they are amazing there. the Bair hugger heat pads were hard work …especially as I’ve been flushing since tamoxifen started. I bought myself a chillow pillow which I took in which offered wonderful relief! I also took in a small battery operated hand fan. I was up and walking on day 2 (well, more ‘hobbling!’) & thought I’d never be able to stand up straight again! however with the help and reassurances of the physios I was more or less upright by day 5 when I was discharged!
I did buy front fastening nighties etc but stuck with hospital gowns instead as they were so much easier for the constant checking (was every 15 mins the first night to check blood vessel whooshing in breast with a doppler) and to accommodate the drains and catheter. All the drains were removed before I came home and that first shower was heavenly! I bought front fastening soft bras but they were too small with the swelling. tHe hospital provided 2 beautiful M&S ones fitted by the OT.
All in all it is a huge op but worth it! I couldn’t handle the thought of implants which may need replacing in the future. The frustration is holding back from doing too much at home and having to rely on others for help. But I’m. getting better at that! very best of luck with yours. take care, Jacqui x
I’ve found this thread really useful. I don’t have an exact date, but am told they are trying to organise for early April. Trying to get organised at home for my period of inactivity! The tip about the little electric fan is really useful.
I was diagnosed in mid December (multi focal 4 areas invasive ductal in right breast) and feel I have had to really fight to get the surgery and reconstruction I want/need, because I wanted the other breast removed as well. I am having to travel 2hours to see the surgeon who has accepted me and who has been so supportive since I met her. My local area don’t even do the diep reconstruction and gave me no information about where I could go. I found my own surgeon, but the delay and battle I have had has caused me a lot of anxiety and distress. I am also concerned that it has allowed the cancer time to spread. I was originally told my lymph nodes were clear, but now I have 35mm piece in 1lymph node and have to have a level 1clearance at the time of my surgery.
We shouldn’t have to go into battle with the NHS when we are already going through the biggest fight of our lives! They shouldn’t treat us like we are automatons who don’t need information and will be good little girls who will do what they tell us and be grateful for it! That’s another rant over!
Feel quite calm at the moment, but know that will change once I get the date.
Sarah, CJ, Yasmin and Jacqui (hope I’ve got everybody whose very recently gone through this on this thread) how are you all doing now? Hugs to you all. Hope everything is going well with your healing. I know you’re all at slightly different stages of recovery, but hopefully you’re all feeling more like yourselves.
I’ve got my date now, Sunday 29th April, it’s a weird feeling, because whilst I can’t wait to get the cancer out of me, I don’t really want to have to go through this op or lose my breasts and then I can’t wait for the op, so that I can be on the other side of it and get to know what we are really dealing with and start looking forward. Don’t we have to run the gamut of emotions with all this? Does anyone still feel sane after this? Love to you all xxx
Hello Fairy Dust
I had my DIEP in November and I felt very much like you, both wanting to move on with things but being scared about the actual operation because there is no going back. I had a delay becuase when I had my pre-op CT scan they discovered a large cyst on one of my ovaries and I had to have this removed by keyhole surgery and then recover before they could do the DIEP.
The way I tried to think about the operation was not so much losing my breast but losing some unhealthy bits and relocating some of me.
You will get through it and cope with whatever happens. I have recovered well and been amazed at how quickly the time goes by, which means that the worst bits are soon in the past. I am not very good at asking for help but decided that I would take everyone up on their offers of support, visits, food etc and this really helped. I also decided that I would not keep it secret and everyone was really supportive. I support my Mum a lot and all her neighbours, district nurses etc made sure that she had lots of support when I was out of action.
All the very best for the 29th.
Hi fairy dust. I felt similar to you: on the one hand I was terrified and overwhelmed, but on the other hand, I just wanted them off to get the cancer out! I was also bizarrely excited at the prospect of a tummy tuck! I’m a fat cow! the morning of the surgery I was terrified, but the team were amazing and so relaxed and calm that I felt safe and reassured. The aftercare on the ward was top notch.
We’d be somewhat mad wouldn’t we if we weren’t scared at the prospect of such a major op. I’d had chemo first and the surgery was easy compared to that! deep breaths hun. you can do it. Jacqui xx
Thanks Jacqui and Strawberry. Not been on for a while. Looked in a couple of times, but not felt up to posting. Emotions all over the place with just over a week to go until the op.
Seeing GP tomorrow about maybe going off work next week. Managed to keep going for the last 5 months through this, but really finding it difficult to put that happy face mask on every morning. I love my job, but think we sometimes just need to take time for ourselves through this ordeal, if only to maintain our sanity. Feel like I could do with a good cry (or very loud scream), but haven’t been able to.
Hope everyone on here is recovering ok. xxx
How’ s everyone doing?
I’m home now and 1week post op. It’s strange looking at what I posted before and how I feel now. I’m quite surprised by how well I do feel as long as I don’t cough, sneeze or laugh!!! Ouch!!! Feel happier than I’ve felt since my diagnosis before Christmas. Body looks bruised and battered, but cancer well and truly evicted and body showing promise. Managed to stand in my shower this morning! Hubby surprising me on how well he is looking after me.
One thing I must say is how well cared for I was in hospital. All the staff were amazing. I was a long way from home (2hour drive) hubby and a couple of family members visited in the evening, but because of excellent care I felt very safe.
Would love to hear how those who’ve gone before me are doing now. Hope you are all feeling amazing. xxx
1 Like
Hi,
I am discussing a reconstruction using my stomach area if it is possible for me. What size lump lump did or do you have? Many thanks.
I’m 12 wks post bilateral diep and completely back to my old … somewhat more bustier…self! tummy tuck is glorious! had radiotherapy straight after …about a 3 week gap. finished radiotherapy last week and the zapped boob still pert and full (but burnt!). only had radiotherapy on left side and nodes done there too and so far no major hardening or shrinkage occurred. warned that this may happen still but I’m hopeful! The surgeon has reassured that when I get my nipple reconstructions, she will do some lipo if boobs inbalanced. It was the best decision I made to go for the diep. good luck to u ladies going through. …or come out the other side. I still say it’s a walk in the park compared to my chemo! happy to answer any questions xxxxx
Good to hear you’re feeling good fairy dust! ditto about the level of care. awesome medics and everyone else I came across whilst in hospital. They are seriously talented and really care.
They are bigger than I wanted but when I lose weight, they too will lose weight but not sag as much. They are certainly full and pert with a cracking cleavage! I had my nipples removed too so they literally scooped all the breat tissue out from there, got to my lymph nodes on tne left through the breast so no underarm incision, then stuffed then with tummy fat. I go back for nipple reconstruction in Feb next year when everything’s recovered. tHe slash from.hip to hip is already fading. the ‘new’ belly button is even amazing. remarkable really. With a bikini on, you cannot tell I’ve had any surgery. x
Thanks chasanddave. Yes i would be interested to know the effects of radiotherapy although hopeully there will be none? What did they say if you do get any side effects? Many thanks.
Hi Linda. For the burns it’s been creams and dressings. they’ve all largely healed now in less than 2 wks from last zap. any long term boob change/shape the surgeon says she’s happy to revise before the nipples go on nxt year.
Thanks.soz saw u mentioned lipo in previous post. I just hope this is an option for me. I am getting a second opinion from royal marsden in london although not keen ogn travelling there whilst on chemo as i am in the south west although from lancs originally.