Now I’ve finished treatment I’m hoping to have Mx on my good side. I don’t want reconstruction. I’m just wondering what the time scale might be. Can I ask if anyone has had same and how long did you have to wait?
Hi boxofrogs!
I finished chemo mid November (after left sided mastectomy in June) I was put on the waiting list for elective surgery with the plastic surgeon in October. I am wanting my ‘good side’ removed aswell, but am slightly different to you in that I also want both sides reconstructed. I have already ‘breached’ the 18 week waiting time and have been told that as surgery is not life saving/urgent, I could be waiting a further 8 months!! I appreciate that there will be urgent cases that take priority, but it feels like I’ve been left in limbo.
Wishing you better luck with your wait! xxx
I had left mx last August, saw surgeon in Jan this year to discuss prophy mx to right side, immediate recon. I was offered surgery in April but turned it down because I have an exam! I have now got a date in June.
So it was about three months waiting, or five. Not too bad. I hope you are not waiting too long. x x
It probably depends on where you live.
I was told that the waiting times are well over a year. And even when you finally get a date, the likelihood of cancellations are very high - delayed reconstructions are continually displaced by people having immediate reconstructions.
Yes, in theory there is an 18 week target, but this target is never met (at least not in my area) for delayed reconstructions because of all the immediate reconstructions which have priority as they are part of cancer surgery.
I’ve decided to have mine done privately as I couldn’t cope with being in limbo for that long. I want to get put back together again and get on with my life. I’m lucky to have taken out some private health insurance a few years ago. It doesn’t cover the full cost of my reconstruction, but it does cover the hospital bills and more than half the surgeons and anaesthetists bills.
There are other options for people facing long waits on the nhs. Surgery is cheaper in places like Belgium and you may be able to claim ithe cost back if you travelled to another EU country due to “undue delay”. See: nhs.uk/NHSEngland/Healthcareabroad/plannedtreatment/Pages/Article56.aspx
I’ve never tried to do this myself, but it is something I would consider if I faced a long wait.
Update: Having looking into a bit more, you may not even need “undue delay”. There are two routes to getting planned treatment abroad in the EU funded by the NHS: the S2 route and the Directive route. With latter, it looks like you don’t even need “undue delay” - the approach is that if you are entitled to the treatment here, you can get it there.
Hello Ladies
It is true that initial bc diagnosis takes priority over reconstruction ops. I had right mx in September 2012 using strattice recon. I was told that this would be followed with a mastoplexy of on the other breast to gain symmetry. I was put on the waiting list in Feb 2013 and op was cancelled 3 times. I finally made a complaint and had the op in November last year.
I now want to have a permanent silicone implant put in prior to nipple reconstruction. My surgeon is very reluctant but again finally put me on the waiting list. I fear that I will be waiting years. I hope to move house very soon which will give me some extra cash and have decided to go private and dam the cost. Sadly this seems the only way forward to me and the only way to reach the end of the journey. Like many of you, life feels like it is on hold and we are forever waiting.
Regards Chris
Hi all
Joining the conversation late for the benefit of those reading it down the line… I went down the elective surgery route having been tested positive for the BRCA1 gene. My private medical deemed it elective and wouldn’t cover it. The nhs deemed it ‘routine’ and dumped me on a waiting list. 12 months later I got my surgery but it was too late, I already had a small tumour. I am 38.
So my advice to you if you are going down the elective route, don’t sit back and take the delays on the chin: if they can’t fit you in, you should at least be offered regular scanning to detect any changes.