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diep reconstruction

28 REPLIES 28

Re: diep reconstruction

I am due to have a diep flap in 18th July at Stoke Royal. From my first appointment it has taken 14 months. I am happy with work that he has carried out up for other ladies. I

I had an implant 15 years ago which quickly became encapsulated. I am very excited and a tad anxiou s. 

What have other ladies taken into hospital with them. Did you have compression knickers and sports bras while in hospital or wear them at discharge?

I am sorry to hear that other ladies are having a difficult time.

Re: diep reconstruction

Hi Brenda

I am interested to read you had your surgery at East Grinstead, how was it?

Re: diep reconstruction

Hi Marie 

Just to say Iv been reading your posts and I wish you luck , hope everything works out for you . Big hugs xx

Re: diep reconstruction

Hi

I live in Surrey.  Have just posted, as I am so fed up with NHS I am going to Europe to have the Bu Lateral Diep done, as mentioned earlier according to NHS we all have CHOICES and Europe is included, given my GP has gone out of his way to get me to return to the NHS who did a botch job on me I find it unlikely he will sign off the forms for me to have the surgery in Europe, however, I read  a doctor had problems with her funding, she paid and then reclaimed it from them.   My priority is to get rid of the pain and these dreadful implants and after I have done that then I will start to re claim AFTER I have changed my GP

Re: diep reconstruction

Hello

I am so sorry to hear you too are having to wait so long for your surgery.   Not sure if this will help, according to NHS construction we all have options and they extend to Europe, I have just been to Belgium and their list at the moment is 5 months, you could ask your GP to arrange the funding for you there, if you decide to go this route send me another message and I will give you all the details.   I have been waiting for a year here and have seen 2 hospitals without success, I am sure the NHS are preventing, I am using our savings and going to Belgium to have it done.   I saw the hospital this week and it is FANTASTIC, far better than UK, no queues in A & E either.   Price 22.000 euro for bi lateral Diep flap reconstruction.   I have heard of people who have been able to claim back from NHS.   If you look on NHS choices web site - according to the LAW we have choices!

Re: diep reconstruction

Hi, for recovery, you should estimate 1 week per hour of anaesthetic. Its not just the surgery you need to recover from, its the anaesthetic too. Waiting lists are long now. Im anticipating about a year to wait. My surgery will be in the Mersey region.

Re: diep reconstruction

Hi tracyH you will first have to be refered by gp to a breast specialist. If you are suitable for DIEP they will then refer you to plastic surgeon. The wait is usually a year as they are so busy and it is a long op. My plastic surgeon does one a week as it blocks a theatre for the day?
I am now 10 weeks post op. I have read that some ladies went back to work after 3 week quite honestly I couldn't even straighten properly after 3 weeks! Everyone is different and recovery is based on age and previous cancer history. I had the full works, chemo, db mx, radiotherapy , Herceptin and Letrozole for 5 years initially! I had a series of failed tissue expanders and silicon implants! All this commenced March 14!
DIEP was my last hope I am 61! Good luck.

Re: diep reconstruction

Hi Marie 

What area of the country do you live in?

Re: diep reconstruction

Hi

Apologies for the delay in replying, I have spent the last 4 months trying to find surgeons with Diep Experience, I found them, the prices range from £25k - £50K which we cannot afford.   As mentioned we paid for my mastectomy and reconstruction because the hospital I attended want to perform a lumpectomy on me 5 times.   I had the LD flap, the implants deflated as a result of a tube having been left inside me, they were replaced at my local NHS and she put DOUBLE the size implants in me they are heavy and exceptionally painful and they too have started to capsulate.   I went to my GP and asked to be referred to another hospital, I went and of course the consultant was a friend of the lady in the hospital who put double the size implants in me, he was very rude to me and antagonistic, then he said they have an 18 month waiting list!    He also told me I could end up having nothing, I almost fainted, my husband advised me not to go there he was with me and said that man us RUDE  I returned to me GP who again tried to get me to return to our local NHS I refused.   I explained where I would like to go in December, I attended an appointment with them yesterday - travelled for 8 hours in total, was there 10 mins and the surgeon who my GP arranged for me to see told me he is retiring in 2 months, thus did not even bother to examine me, he said he will recommend me to another BUT he does not know if he will do it, foolishly I did not ask why, I just cannot understand what is going on.   I am slim, I do not smoke and I do not drink,   I am so so so depressed, does anyone have any ideas, we just cannot afford to pay up to £50k

Re: diep reconstruction

Tracy H...I had a DIEP  on the NHS.you will need consultation with your surgeon who can then refer you to the plastics team if need be.It is major surgery,and I advice to get fit before you do have it.Best of luck,and let us know of any developments .

Re: diep reconstruction

Hello Brenda

I noted we are same age!   Have just posted a question, I had bi lat mastectomy in 2005 whuch we paid form took a lot of our savings, the implants deflated, the replacment implants were done in 2011 and they are so so painful, 2 specialists have said they are oversized, but the problem I have is who does it on NHS, in private sector they want about £15k, to do them and to be honest we really do not have that kind of money, one hospital has quoted me £2445 for 4 nights stay in the hospital!

Re: diep reconstruction

Hi

Had bi lat mast 2005 with immediate reconstruction using LD flap with an implant, first implant deflated, current implant is so so huge and painful it must go, I am 67 has anyone had the DIEP flap on NHS 

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Re: diep reconstruction

Hi all,
Just wanted to update how my op went and some more advice needed please.Had my op last tuesday,went well(about 6 hours),was out of it for the rest of the day.Had to stay in bed wednesday because of low blood pressure.Thursday evening walking around(after feeling very woozy during the day)Friday just needing panadols and ibrufen,and able to walk to bathroom to wash myself,saturday ,home-yippee.Monday,allergic reaction to elastoplast of all things,so needed steroid cream,rash is healing,however today had dressings changed at hospital and have a haematoma on reconstructed breast.The doctor squeezed my breast to get the blood out ,and took squab (he didn't seem too worried,and there wasn't a great deal of blood),I am going back on tuesday.Has anyone else had this ,I am now about ten days after surgery,am a bit worried ,as the implant reconstruction kept failing.The flap is warm and isn't sore,and I feel well.Any advice greatly received please

Re: diep reconstruction

Brenda, when I got home from hospital, I called the BCC helpline with concerns and when feeling down, during the first few weeks home. The women I spoke to on the other end of the phone were magnificent! For me, it was a roller coaster ride emotionally and my pain continued until about week 8 when I could finally reduce to over the counter pain meds.

I had my little laptop with me in bed (and hospital) and I fell into comparing my recovery with others. I was reading of a woman who was jogging at week three and another who said she took no pain meds . I also read awful recoveries of women who's flap had become infected and other problems. DIEP is a huge op, that takes time to come back from - each day in recovery does build on the next. I do take to heart that what someone else did or the experience that someone else had will not be entirely how it is for me or you. My sense of humour kept me from feeling sorry for myself.


The day before surgery, I walked around the back garden at sunset with my bra and top off, feeling the breeze against my skin - my soon to leave me left breast. I said good bye to it and thanked it for serving so well by feeding our son and that we had been together for 56 years. I have a memory of that closure and it helps, because it is a permanent, lifelong change - an adjustment to accepting the "new normal".
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Re: diep reconstruction

Hi ladies, I really am new to this forum chat, and I've just spent nearly an hour catching up on so many pages of such helpful, different and interesting comments. Lilac Blue, fantastic your list of such helpful things needed to take into hosp. at time of op also comfort clothes during and after surgery, and much more. I'm due 9th April a couple of months away still, for Diep recon. have been on waiting list since August, mx was in June 2011, have done quite a bit of reading as I'm sure we all have, and although I was a candidate for three types of recon. PS said diep was best suited for me, saying that, insisted I don't hold back on putting on weight, need to add at least half a stone or more, more tummy flesh available for op, I'm getting there, but out of my comfy zone, still eventually will hopefully be a tummy-tuck. I get the impression most ladies are quite a bit younger than me, I'm 67, and I live alone, so it's been good reading what can/cannot be done, saying that I have plans to stay with my daughter after op for at least a week, so I'll be resting all I can, and once home friends, neighbours and family will be on hand to help, especially if I have to return to hosp for dressings, that does worry me a bit, my hosp is E.Grinstead, about an hours drive, how did any of you ladies cope, I'd like to hear......Brenda

Re: diep reconstruction

Hi LB, My hip scar is horrific too and has taken me a while to get used to it. Along with two reconstructed breasts I feel that I have a totally different body than I did before. My hair has still refused to grow back much since I finished chemo in Oct 2012 so when I look in the mirror - who is that person?
Hope that you are recovering well from op and you are pleased with results.
Charbs x

Re: diep reconstruction

Charbs, I hope you are better and better as each day passes. The softening did come and my physio massaged my breast to get it going. That helped quite a bit and the odd sensation of my numb 20 inch hip-to-hip graft incision being massaged gives me the willies. It give me the sense that spiders are walking across my stomach. I'm six months out and the graft area is a rudy red blure of a line and has not yet turned white in colour. I do want that. I'm grateful for not having any infection or any problems really, yet the graft incision has been the body change that has taken adjustment to live with, said by a woman who 13 year prior hd a c section. This hip-to-hip incision far out weighs that. You are right on about keeping the breasts warm and buying the thermal camisoles a terrific idea. For my diep stage 2 surgery that I had this past Wednesday, I bought the day before - a £8 black fleece hoodless zip up at Sainsbury's and it's been perfect to throw on easily, soft and warm, with no hoody bulk at the back of my neck to contend with.
LB, x

Re: diep reconstruction

I had a double mastectomy with node removal and immediate reconstruction using my tummy tissue 5 weeks ago. The op was carried out after I had gone through 6 cycles of chemo, but I am pleased that I had it done. The results are very good, one breast had to be made smaller to match the other as I have had surgery before and this breast is a bit misshapen but improving all the time as it softens. It all feels quite tight still but I do feel as if they are a part of me.
I was in hosp for 5 days, suffered no pain only discomfort and normal painkillers did the trick for me. I still need them at night to get me off to sleep as it is uncomfortable to turn over or sleep on my side.
I was walking around the day after the op. I wore hosp gowns all the time I was in as the nurses needed to check the new tissue and the blood supply, so it was easier for them to access both breasts. It is important to keep the whole area warm while the new tissue establishes itself so I wore thermal camisoles over my sports bra when I got home.
Good luck.
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Re: diep reconstruction

Thanks everyone,will start stocking up on useful stuff .Feeling a bit better about op now(think i had pre-op wobble).Have been eating loads to try to get as big a belly as possible.Thanks for all the advice.

Re: diep reconstruction

Hi Gill , Cluck and everyone,
(Gill I think we have commented on FB).
I had a DIEP flap on November 10th, it took 9 hours, and I am a size 10-12 and was told it would be very tight.
My boob , nicknamed "Belle", is absolutely fantastic and has been worth every bit of pain.
I was bed bound for 2 days, out of bed day 3. I was nursed with my legs on 4 pillows and sitting upright. I actually did manage to sleep like it. When I got home I slowly took the pillows away, and was pillow less, under my legs by about week 3-4. I was not allowed to stand up straight for 3 weeks, and actually was given a zimmer frame to walk with, boy did I get the mick taken!
Day 1 and 2 were quite uncomfortable if I tried to move a lot, but I still managed to bed bath myself. I was walking a little day 3, and day 4 when catheter out, I was walking the length of the ward to the loo! Home on day 6.
I had a few problems with seroma collection with my stomach, but the PS saw me weekly after the op and drained it with a needle, it wasn't too bad.
I was driving after 3 weeks, and back at work, three v long days a week, just after 6 weeks. I am now 9 weeks today and played golf, went to zumba and swam this week, although PS said with most peeps this would be 12 weeks; he admitted defeat as I hate sitting around!
My new boob is fantastic, I am having a nipple made in May and will need some lipo-fill then too as there are some dimpling in areas. MY tummy has healed really well too, but it is still Very tight 9 weeks on. My scar is 50cm long!!!
All the pain and discomfort has been worth it.
I am still wearing my sexy (not) Marks and spencers medium resistant knickers, they are sooo comfy, but now wearing normal bras. I wore sports bras post op, I found these the most comfy, but other ladies were wearing those "magic" bras with no seams etc.
If anyone has any questions, please ask, or PM me.
Good Luck girls
Ruth 13 ( Fiona)
PS. Lilac - I took a hoody, never wore it, the plastic wards are so hot with all the tissue flaps everywhere, and I just wore nighties initially ( when catheter in), then PJs.

Re: diep reconstruction

I thought I would start a list (in no particular order) that might serve as a reference... PLEASE add your suggestions!!! Anything at all you either found helpful OR wish you'd considered before your surgery.
Here we go, again, please add YOUR favorite tips--
Move commonly used items, kitchen tools, etc to low shelves before surgery
Have constipation meds ready - *important*
Fill scripts before coming home so you won't have to stop on the way
Have a pillow for the car-ride home. Have extras handy for propping up at home
Lip balm / lotion
Mp3 / Music player/Kindle/laptop with chargers
Notebook for managing meds, etc
Phone / have friends' numbers handy
slippers
dressing gown
camisoles/tanks which can be stepped into (as opposed to pulling over-head)
Silky bottoms/PJs to make getting in/out of bed easier
button up shirts
zip up hoodies/ warm ups
pull on, easy pants
sports bras (got mine at Amazon, mostly cotton, different colours 3 for £15) or whatever support is suggested by your surgeon
dry shampoo
regular shampoo/conditioner
face wipes
baby wipes
floss holders

Re: diep reconstruction

Gill, all that has come before applies to you too. Do you have someone that can come a help for a bit or friends who can get your child to and from school for a bit? YES, asking for help is not easy and you have to do it. It was one of the hardest things for me and my woman friends were more than happy to help, it was me blocking the good, I guess..pride? Call the BCC helpline as they were super to me during the run up to the op.

I also did my own depilatory "down there" (not full yet, low and tidy) the night before the morning I arrived for the op and that pleased the surgical staff.

During the day while I was in bed, I rarely read as the meds made that hard, so it was online for me flitting around like a magpie, magazines, tv and radio. I bought groceries online, that was time consuming and as well as easy. Forget housework for a bit or hire someone to come in. I found a woman who told the news agent in the village know she was available for housework and I had her come in for about 3 months.

If you drive, you can buy online a thick, soft sheepskin cover for your seatbelt that velcro's on and off, so you can move it to drivers side or passenger. Make sure it's thick or looks thick in the picture and don't buy a thin one (cheaper and those are useless) The thicker ones displace the weight of the belt across your chest and much more comfortable for being in a car. I think the one I purchased was £15 and they come in different colours and two sizes and I bought the longer of the two. I still use that now six months out, and as I have stage 2 in a few weeks; it's a keeper.

Keep talking Gill and you can get through this. No one asked to be in this club and with help from family, friends and insight offered from women who have as well as BCC, Dr.'s and staff, you will get through this horrible time in your life. LB, x

Re: diep reconstruction

Hi Ladies
Like Cluck I've been away from the Forum pages for a while, but have come back looking for advice re DIEP recon, which I'm scheduled for Jan 23rd
I'm concerned as I live alone with a 7 year old daughter, and I've been worrying about how I'll manage. I think its because I've got the time to worry about the details, unlike when I had my mx, it was all so quick. I think I need to accept that I will need all the help offered and I'll have to ask too.
Thanks for the detailed info on your experiences, its been very useful
Gill

Re: diep reconstruction

Hi Cluck. I think I remember you from 2010 as I had my ops in Jan 2010 as well. Like Saffronseed I had delayed diep (in Sept 2011) and up lift and nipple in 2012. As others have said a big op but so worth it. I have just been for my annual mammo and the radiographer had to ask was it a full mx or just partial because the recon looks so good!
I was in hospital for a week. Each day doing a bit more. By the time I got home I could potter around quite ok and I live alone and coped fine looking after myself, simple cooking but kept off the cleaning! I tired easily and to start with only walked very short distances gradually increasing each day.
I healed with no problems and was back driving after three and a half weeks. I avoided any lifting for six weeks but cautiously started back at my Pilates class at this time and looking after my grandaughter one day a week.
Good luck with your op.
Pam x

Re: diep reconstruction

Cluck, like Saffronseed, I have no regrets and know this was the best recon I could have. I had my hesitations because of recovery time, and my onc said this was a blink of the eye on my life timeline and that my son and husband would be fine. And they were. My surgery was 10 hours and was well looked after. You will be able to get the kids up, breakfast for them and lunches packed for school, with someone else taking them to and from school and back to bed for you, perhaps a shower or bath, back to bed. It does and can work out. Friends will offer to help, mine did and please say yes to that. My friends care and so happy when they could help.

The time will go by fast and then, before you know it, you will be here on the forum, typing a response to another woman who is looking for understanding and info of what is to come. I think we all felt scared befroehand. Big hugs to you and please keep talking and sharing. It does help.

Re: diep reconstruction

Hi Cluck, its worth ringing the helpline who can put you in touch with someone who has had a DIEP and can go through it all with you on the phone and answer any questions you may have. I had a DIEP last year - it was a delayed reconstruction as I couldn't have immediate one. I do not regret my decision one bit and love my new body and so proud of my new breast. I was very anxious beforehand as its a big op and the medics go through all the gory details with you (they have to!) and it is off putting. I was in theatre for approx 9 hours and then in intensive care (they put you in there to keep an eye on you) - I was back home after 5 days. I was told not to do anything at all for the first few weeks - so I just relaxed and got waited on. I found walking upright difficult as my tummy was tight and also getting in and out of bed for the first few weeks was hard (again due to tight tummy) but I was soon back to normal and driving and doing normal stuff after 6/8 weeks - its best to be prepared though so you need some help for the first few weeks. No regrets at all from me and I am due to go in for my other breast uplift on 16th January and can't wait to get it done and completed. Good luck xx

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Re: diep reconstruction

Thank you for your reply,will have a look at the other threads.
Thought I had definately decided,but worrying now that it is the right thing to do.From talking to PS this is only thing suitable for me,and don't want to have no reconstruction.Feel a bit guilty as I have 6 and 7 year old and want to be fit asap (I've had lots of problems with my arm after all the ops,but physio is really helping).Wish I could fast forward a couple of months.
Thanks again for replying

Re: diep reconstruction

Cluck, there quite a few different threads here at BCC discussing DIEP. You want a very good, experienced PS to preform your DIEP. This procedure is really about skill in order to get the best result. You seem to have been through the implant mill and had undesireable results and sorry to read all that has come before.

I hope you have time for recovery. DIEP is a journey, at least for me it was. A DIEP is a longer, more complex surgery and the recovery period is longer. I can honestly say, I really was not prepared for the 20 inch, hip-to-hip incision. It was painful and yet, I had no infection or problems. I walked hunched over for about 10 days and forced myself to start standing slowly up. Your stomach will be tight and will have a newly formed tummy button. Mine is now a few inches higher than my last one. I also post-op wore soft trousers (jersey), as my jeans or other stiffer fabric trousers hurt against my hip-to-hip incision. I found Lands End UK has a good selection, that washes and wears well and on sale frequently. You also need compression pants and I bought those at online at Matalans (shape wear - high waisted, Sainsbury carries them as do all department stores) in two sizes up from what you normally wear, due to swelling.

I slept on my back for over 8 weeks using pillows under my legs, sleeping on my back - legs articulated. I took opiate based pain meds for the first 6 weeks (they also helped me get to sleep) and that is about how long it is until you can drive again (if you drive). You also need someone to care for you, at least for the first 2 - 4 weeks. I was in hospital for 6 days and went home with no drains.
My husband worked from home for the next 3 weeks (I have no family in this country and his elderly mother is up north and neither of us desired her help) and got our 13 year old son squared away for school, meals, etc.. There was one point my husband wanted to go away for business at week three. I called the helpline at BCC and after he chatted with the kind nurse responder, he changed his mind or rather, she changed his mind about going away at week 3. The first four weeks after DIEP are the most critical because each week builds on the next. It was not, (at least for me), a smooth, straight line of recovery.

I have insurance and have had physio weekly for sometime - the past 5 months. My physio massages my fat-fill breast to help get it soft and also my hip scar. My physo also is helping me to get full range of movement back bacause back at the end of September, I developed a froen left shoulder. Went to a ortho consult to get that sorted and still more physio.

I'll have stage 2 surgery in a few weeks for scar revision, lipo of my left breast and hips to smooth them from the dents at the end of the incision and nipple placement. I was a small breasted woman and my goal is to get back to looking as much like myself - as I was before surgery. My left breast has been over-filled and I've been wearing a insert to balance the look under clothing.

The thing to remember is that everyone's experience with surgery is different, everyone's pro vs. con list is different and everyone's emotions are different. So don't think that every experience of DIEP on what someone else did or the experience that someone else had will be how it is for you. We are all different and I hope this time around, you have no infection and that all goes as smoothly as possible. You deserve it.
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diep reconstruction

Hi,
Haven't been on here for very long time.Diagnosed BC Jan 2010,had mast with expander implant,then chemo and rads.Had implant replaced with permanent implant March 2012,but had many infections and five ops later have had to have implant removed.Have been advised Diep is best recon for me,with reduction on good breast and have date for op Feb 4 th.Am very nervous about op and would like advice about recovery,how people managed to sleep afterwards etc .Also I am quite slim so concerned about what my stomach will look like afterwards.Any advice please