wait for reconstruction

hi there,i had mastectomy 13 months ago,i have finished all my chemo and radio,i went to see plastic surgeon today and have been told there are 60 people in front of me for reconstruction and there is over a year wait,im gutted 1m 39 and fed up of living like this im sick of having to think about everything i wear and remembering to not bend over in front of people.
my nhs paid for prosthesis is now too big so i had to buy another which was a stick on,that is losing its stick already so i will have to buy another,i also need new bras .i find it so unfair all this extra money i am having to find through not fault of my own,i find it terrible that companies who sell mastectomy products are profiting from our misfortune.
obviously im pleased that my treatment has saved my life,and im very grateful,but i still cant move on,whilst i only have one breast.is anybody else on here having a long wait like me,if so how are you coping.
i really dont mean to whinge but my family and friends dont understand.

Oh Donnaw I know just how you feel. I had my mx in Jan 2010 then chemo and rads and then went on waiting list for recon. I have just reached the top of the list and was due to have op on 7th Sept but got cancelled the day before. You can imagine how I felt! I am now due to go in next Wednesday so fingers crossed that it will go ahead this time. I feel that the whole of this year I have been in limbo waiting to have a date for op. I too have all the angst with the prosthesis. Hate having the clothes problems etc. One thing with your prosthesis, if it is the wrong size you should be able to get another one on the nhs and you can get the stick on ones. Try contacting your bcn. Wish the waiting lists weren’t this long but they seem bad all over the country.
Pam x

Hi Donnaw
Yes i know how you feel too!

I had mastectomy two years ago and was fitted with a tissue expander at the same time.

It did work out well, so i had to go back on waiting list for an LD flap at a new hospital, under a new ps.

The whole experience has been horrid, as i was nearly in the situation, where my expander implant had to come out and i would have been left with nothing for some months whilst it all healed up.

If you are wanting recon, i don’t think you can really move on, until it has all been done, and it is such a long process to be a a part of.

All the very best and i hope your turn comes soon.

Nasreen x

I’m in the same position, I finished my treatment in May 2010, I had expected my next surgical appointment would be to discuss reconstruction, need less to say I was disappointed when I had to be told by the nurse that they won’t look at me until I’m a year post.

I’ve remained very active throughout keep myself as healthy as possible got great mobility back in my shoulder skin in good nick so pushed for my plastics appointment in October 2010. Decided to go for the DIEP, told I would have to wait but likely to be within a year. Surprise surprise when I rang up today to ask if there was anymore info for me I was told 2 years. I’m totally devastated, I’m self employed and have been careful not to take on work that might be when I had expected to be going in for surgery. I feel like I have been mislead the whole way, and having unrealistic expectations only leads to more upset. I feel like I did when I was diagnosed, with all control being taken away from me again.

I can’t believe I thinking about it but I know lots of the good surgeons have private practices has anyone ever had this outside the NHS how much does it cost any help or advise gratefully received I’m based in London so trying to remain hopeful. Feeling like I can put this part of my life behind me is far more important than the cost thanks alli

Hi, I’m in the same position too! MX in April 2009, after loads of treatment - bad reaction to chemo wanted to get back to full health and finish herceptin first, before starting to plan for reconstruction. Saw PS a year ago, was told probably April this year, already had pre-op in June 2011 and went to support group arranged by the nurses at the hospital. Letter out of the blue last week saying that hopefully within next calendar year! Don’t get me wrong, I count my blessings that I’m still here but very disappointed. They said that NICE guidelines have changed which is why more immediate recons are being done. I personally think someone has pulled some of the funding. To go from a few months wait to 18 months is a bit strange. The NICE guidelines changed in 2009, so unless it takes a really long time for them to be put in place I remain a bit suspicious. Couldn’t have immediate recon because even with NICE guidelines, they wouldn’t have done it because strong possibility of rads. Rads has meant can’t have implants, so have to have DIEP. Not something to take lightly, but had finally thought I should do it now rather than regret it later. Bras falling apart, and wrong size because put through chemically induced menopause to take arimidex - thought no point buying new ones, but will have to now. I’ve been quite taken aback by how emotionally I’ve been feeling about this. All the best with the wait, and fingers crossed to you Pam. Alice xxx

I agree, this whole recon business and having to wait, is a total nightmare for some.

I think recon is all part of the recovery process for alot of ladies, and having to wait months and months for anything to happen, is so hard.

I don’t know what the answer is…

I have just this week had part of my new recon done. But the second part needs to be done in a few weeks (long story).
Then my other good side will need some work, and then a nipple.

Had mastectomy two years ago now, and after one failed recon, do not want to have to wait any length of time for the remaining procedures to be done.

Naz xxx

Just thought I’d share my experience. Had mastectomy 5 years ago and recon was never mentioned, waiting for results and the long wait to start treatment was all that was important at the time I guess.
The first time I went to buy a bra post surgery was the worst and an absolute nightmare …I cried in every changing room and shop,(usually still do) Guess we’ve all been there :frowning: . Two years on I asked about recon and a referral went to plastic surgeon. Over the next 2 and half years I had 2 visits to a plastic surgeon and specialist nurse and was told each time that I was low priority as cancer patients came first and no time limit would be given…Just wait.
One NHS specialist even asked if I would consider going private… LOL I told her that after a cancer diagnosis the private health insurance would be either extortionate or refused.(Did annoy me though).
The waiting time is VERY frustrating and upsetting because you want desperately to try to move on and away from the cancer experience but can’t and Donna my family would also often ask “have you not heard from the PS yet?”. GGrrrr.
The waiting makes you think about how you’re managing your life with a prosthesis but I also found myself doubting whether to go through with the recon. However, Out of the blue I got a phone call to go for the surgery with 10 days notice. It’s early days for me at the moment and still wonder if I’ve done the right thing…too late to change my mind now.
Unfortunately there are too many cases of breast cancer these days and I think the system isn’t able to cope, apparently there are a lot of surgeons who will not even consider recon.
If you’re newly diagnosed ask for immediate recon because it seems that you have the best chance of getting it…you can only ask.
Don’t know that my experience will help but ladies we just have to hang in there and count our blessings on a daily basis to try to help us cope. Jackie x

I had my mx in April this year and have just finished chemo and radiotherapy. I have a tissue expander and the last time I saw the surgeon which was a few months ago I asked how long I would have to wait for recon. He was quite vague but said it would be “a few months” and “not this side of christmas”. He then went on to tell me how they used to make patients wait 2 years in case of recurrence but with all the advances in detection processes these days they don’t do that so much. What a relief!
I have an appointment to see the surgeon in December and I was hoping I could have the recon done before my 50th birthday in April. I hope I’m not going to be disappointed.