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DIEP reconstruction
Hello everyone, hope you are well. I just want to rant about having to wait for my reconstruction. I asked last year for this op (Spring 2011). I finally got a pre-assessment date in Jan.2012 and date for March 28th - unfortunately this was cancelled. Given another date of 4th April - this was cancelled. Phoned Broomfield and complained and was given another date of 19th April - today been advised this too is cancelled. I have now been given a date of 2nd May 2012 and asked to have another pre-op assessment on 19th April!!! To say I am angry and frustrated is an understatement. I've told the whole of London about my op as I was so excited to get some semblance of self back but I have to keep telling everyone 'its off' again and again. AAAAAAAAAAARGH! Is this normal? We have enough to cope with when faced with breast ca. let alone dealing with the final frontier and being knocked down over again. I am so angry I keep being dropped; I sympathise 100% with the fact someone else has greater need than me but I'm now feeling totally fed up and down. On top of this my husband doesn't want me to have the surgery so he's quietly happy each time its cancelled. I just don't want to hear about another long waiting list anymore, I need to get this done. Sorry to sound selfish but hope someone can put my mind at ease. Would be nice to learn of a good outcome from any ladies on here and hope you are happy with your new selves and didn't have this dire excuse for cancellations. Ann x
Hi there,
When you're gearing up for something so big, having to wait and wait and wait is just terrible. I had an immediate diep with my mx, so unfortunately someone else was moved down the list to fit me in as the hospital management wouldn't increase the surgery slots. I really hope you get a final date soon.
In the meantime, you could make a complaint to the PCT and or the hospital, or contact your MP....?
It's brilliant that more ladies are being offered recons and are feeling confident enough to go for it, but the resources aren't being increased, in my area anyway. I felt really sorry that someone had to move down the list for me, as it was full for eight months ahead with ladies waiting for delayed recons like you. Even so my op was more than three months after my dx.
If you would like to hear about some people's recent experiences of cancellations and waiting but then actually going through the op, let me have your email address on a pm and I can put you in touch with several ladies who have been in just that position. It Is worth it, despite all the difficulties. The waiting isprobably worse than the actual op. And there is a tough few weeks afterwards but everyone I know feels glad they went for it.
Dont despair, you will get there and hopefully your recovery period will be when the weather is good. Dont forget to PM !
Big hugs,
Nonsuch
Really sorry you are in this position. I have had my operations cancelled and changes done over the last 2 years. In the end I ended up putting in a complaint and felt really guilty, the response was not very helpful but I do think it got things moving faster. I done this through PALS rather than ranting myself. I was worried they would treat me differently but they didnt.
Good luck with getting a date and hope you get sorted soon. Im 5 weeks post double recon one diep one tram and doing much better, will be worth the wait in the end xxx
Hi Ann
I am really sorry to hear about your situation, it must be really distressing and frustrating for you, especially after you have been waiting for so long.
I can't comment regarding your operation being cancelled as I have to say once mine was booked, it did go ahead as planned. I had a mastectomy, full node clearance and immediate DIEP just over 4 weeks ago and I am so pleased. I am healing extremely well and nearly have full movement back in my arm now.
I did not have my operation at Broomfield but at The Nuffield in Brentwood as a private patient. There is a strong possibility that your DIEP could be done by the same surgeon as me (not allowed to name on here) and I can promise you if it is, you will be ever so pleased with the result.
Please feel free to PM me if you want to ask anything and if you let nonsuch have your email address we may be speaking more often
Big hugs
Natalie xx
Hi. Sorry to hear that you have had long waits and cancellations to contend with.
I had a seven month wait between seeing the ps and my op. I had one cancellation one day before my op was scheduled but they then gave me a date two weeks later and kept to that. It is a fact that delayed reconstructions are not classed as priorities so get moved down the lists. I think that as more immediate recons are being done which are priorities because they are removing tumours so the lists do seem to be getting longer. I know of some ladies who have been on waiting lists for over a year now, still with no dates. It is terribly frustrating when you get bumped. I had all arrangements in place, dog already taken to kennels etc when I had my cancellation phonecall.
All I can say is that the wait is worth it. I am very pleased with my diep recon which was done six months ago. I can now wear what I like and feel much more confident about my appearance. I had a week in hospital but once home was able to look after myself fine. I had a very good recovery and was driving after three and a half weeks and back to pilates classes after six weeks.
I hope your op does go ahead on your new date.
Pam
Hi
Sorry to hear about all your cancellations. I had five, two of them because I developed a tiny rash (which was 'nothing' according to a dermatologist) but obviously any risk of infection must prevent surgury. The other three were admin errors so I can really understand your frustration. I might be wrong here but I dont think they are allowed to cancel it again without very good reason so for that reason I think it will probably go ahead soon. My op cancellations affected quite a few people (I am a teacher) and arrangements had been made. My op did finally go ahead on 21st March, it was worth the wait and I am currently recovering.
I did explain to my plastic surgeon after the first two cancellations how upset and frustrated I felt and she has been brilliant and supportive. I do feel she has done the most fantastic job and I am so grateful. All the waiting and disappointments are now just bad memories. Oh, and its three years since my original mastectomy. I hope that helps you.
Linda
Hi Ann so sorry to hear of your cancellations it must be so frustrating for you, hope you get a date soon and they stick to it, nothing worse than getting yourself syked up for something that inportant and then it is cancelled, my date is 24Th May just hope they stick to it! keep your chin up love, Lynn XX
Hi Ann,
Sorry to hear about your cancellations. My hospital was brilliant I had to cancel my app but another one came through within 2 weeks, I did not know whether I was doing the right thing and like you my husband and my grown up sons did not want me to go through with it. I can quite honestly say the wait was to me horrendous, lots of self dount, as I being too vain, did I really need to put myself through this after all the treatment for the cancer. Anyway I have my surgery 3 weeks ago, I had a LD flap which is not as invasive as the tummy tuck, I could not have this due to a scar on my tummy, but while I was in hospital and now even during the recuperation I can say it's worth it, I can now wear 'normal' clothes even at this early stage and I have yet to have another op, before it's all finished.
Keep your chin up, I know it's frustrating having to wait and a bit scary, but just remember it will be worth it in the end, and the recovery period will be in the nice weather. The worst thing for me is I cannot drive for at least 6 weeks, but I am doing as I'm told especially with the scar on my back.
Its worth it.
Marilyn