I was referred to a surgeon back in March. My mastectomy was 18 months ago, I’ve completed all my other treatment, am a non-smoker and have a healthy BMI so there shouldn’t be any delay from those points of view. I’ve seen the surgeon twice so far and he agrees I’m a prime candidate.
However, due to a succession of missing referral letters, misunderstandings and so on things have been going really slowly. I’ve now had a letter from the hospital saying I have to go and see him AGAIN in December, at which point they’ll consider putting me on the waiting list. And that list is 9 months once I’m on it.
I’m totally miserable about my appearance. I’m a 32F, so the asymmetry is extremely obvious and I can’t wear anything which doesn’t come up to my neck; swimming with my children is right out of the window! Also, my kids have already missed out on 2 years of holidays due to my treatment, now it looks like we won’t be going anywhere next year either if I want this operation to go ahead (can’t risk not being around on the date or presumably I’ll go back to the bottom of the list). Quite frankly, I really want to get some quality time in with them while I’m healthy in case it comes back!
How long have other people had to wait? I don’t mind going outside my region if it would speed things up. Anyone know of a private hospital which does this type of reconstruction??? (I’m getting really desperate, losing sleep over this and frankly making myself ill again!)
i first saw my surgeon december 2006, she referred me to plastic surgeon who i saw in feb this year,
she penciled me in for july this year, unfortunatly that date was cancelled as they found i had a leaking heart valve,
and wouldnt continue with my diep untill i saw a heart specialist.
Anyway i got that sorted and had to wait till 26th september.
So i guess if i had not been cancelled in july , it would have been 6 months from seeing plastic surgeon to op.
Hope you get a date soon, it really is worth the wait.
I had mastectomy Dec 05 was originally told by surgeon recon would follow a year later,that was not true, later found out from Onc that PS wont consider recon until at least 12 months clear of rads.
Got referred after my 1 year check up, this was january 07, had 1st PS appt May and was told to think about options and I would get a second appt through for a month later to confirm, luckily my BCN told me to ring his secretary who pencilled me in for recon for 31.10.07 as when I saw him again on the 2.7.07 he was fully booked to the end of year.
So thought I had been clever as had my letter confiming dates of surgery and pre op assesment and then BANG just over a week ago I get a phone call to advise canx due to hospital politics and scheduling and new date would be Feb 2008, I was not happy as I knew I was being put to the back of the queue, I insisted that the system was wrong and patients should be kept in the same order, also advised florida holiday booked for next June as like you kids have’t been on a proper holiday since August 2005, that same eveing I then got another phone call to advise new date 11.12.07. So surgery just before christmas again (mastectomy was 21st) but I was no way going to refuse.
I have also been made to have spine, chest and liver scans to check for any nasties, as the op would be canx if I had mets. Thankfully they came back as no evidence. However I am beginning to feel like I am running the gauntlet for this op, and that my PS is throwing loads of obstacles my way.
I think its another postcode lottery, different hospitals seem to have different guidelines.
I asked to be referred last Nov (still having chemo at time) went to see PS in Feb, was given options although I knew I wanted a DIEP was told to go away and think about the options, then had another appointment in July, at this appt I was put on the waiting list. I think its a way of keeping you off the waiting list for as long as possible then the hospital reach their waiting list targets (I think it should be 18 weeks from being put on w/l to op date, but don’t quote me on this one). I have a provisional date of 14th Nov but still have not received the letter from PS.
The date cant come soon enough for me as I’ve just back back from another unsuccessful shopping trip - everything I try on is too low and having a plastic boob hanging out top of clothes is not attractive!!! then you walk out past the nice lingerie by the time I reach the door I just want to scream, does anyone else have the same problems.
I had my diep recon done privately 6 months after finishing radio and chemo at the Royal Free in London, my surgeon was Pataric Mallucci, the cost to my insurance company was approx £13,000. I know I would have had to wait longer on the NHS and would not have been able to choose the surgeon to perform the op.
If I were you and considering going private, I would phone either my GP or my consultant and get the ball rolling. Would you pay for this yourself or do you have insurance? If you have insurance, try calling them, too.
I’m going private for my treatment. Seeing the consultant and getting procedures goes very quickly. The insurance company have been great. The problem is, it seems all the tests and evaluations get put back onto the NHS as the private hospital in Aberdeen doesn’t have the facilities. For example, I had an MRI last Thursday to see if there is cancer elsewhere in either breast before they decide how much surgery I need. The MRI radiologist who evaluates the MRI is on holiday, and there isn’t another qualified one in Aberdeen. She’s been on holiday since the Thursday before my MRI and gets back tomorrow. She’s back for one day and off again. She promised to read my MRI and write the report tomorrow, but I really, really hope she doesn’t forget and do something else.
Depending on what my circumstances are (as revealed by the MRI), my consultant says I could chose immediate reconstructive surgery, if a masectomy or double are necessary. He also said I could chose surgery at Aberdeen Royal Infirmary or Albyn Hospital, the private hospital in Aberdeen. It is a BUPA hospital, but I think that doesn’t mean much as long as you can pay for the treatment. I’m going to Albyn as they have the cleanest, shiniest floors I’ve ever seen, I’ll probably have a private room as opposed to a ward (I could not sleep in the maternity hospital, sharing the room with five other women and their babies), and the breast care nurse says the food is better. Gotta grin about something!!
Good luck, I hope you taken care of much quicker than you fear.
Thanks for your replies, ladies. My husband rang the hospital yesterday (I couldn’t face it!) and it seems there may have been a mistake on their part. I’m hoping to hear more today, but with any luck they may put me on the list immediately rather than waiting for December, which at least will mean I should be clear in time for a decent holiday in October half term next year (my kids get 2 weeks, so I’m hoping to take them to Florida too). So all in all I’m feeling a bit more positive
Debbie - hope the operation in December does go ahead, it’s stressful waiting isn’t it?
Clare - I know exactly what you mean. I can wander around the shops for hours and come back empty handed. I seem to be living in high-necked T-shirts, which are OK for casual but not great for work.
Jo - I do have private insurance. At the moment they’ve told me they won’t cover the full cost and there’s quite a big shortfall which I can’t really afford (the insurance comes with my job package), which is why I wanted to go NHS. But my insurers seem to have been quoted £17,000 by the current hospital, so maybe I should try the Royal Free, London’s not too bad for me to get to.
Kim - how’s the recovery going, 2 months on?
ScottishHoosier - good luck, hope it works out for you!
Can I ask who you are insured with - I have private insurance because I work in this field and have been sucessful in negoiating with my insurance company and the surgeons to get the best price as initally I too had a shortfall - I’m afraid it is the same with everything she who shouts loudest gets the best service. I am suprised at the £17,000 quote, my surgeon who I was told by my insurance company one of the most expensive charged £5000 for his services and is in London, I interviewed a surgeon from Buckinghamshire who quoted a whole package price of £4000, so I’m sure you could get it cheaper or get your insurance company to increase their allowance for this op.
If you can get the op done by your insurance I would recommend you use this route as at least you know your op isnt going to be cancelled at the last moment as has happened with some of the ladies here.
it will be a month on Friday, as i had my Diep on 26th September.
Recovery is going well, very surprised about how little pain i’ve had,
feel more uncomfy, hardly take my pain killers now.
Still got swollen belly and boobs, and need to have afternoon rest.
However i’m so pleased with my new boob, its wonderfull to have cleavage again.
Good news about your hospital call, i hope you get a date soon, then at least you’ll be able to plan things around it.
Well, my optimism was misplaced. Apparently my previous 2 meetings with the surgeon were not aimed at getting me onto his waiting list, so I’m still stuck with the December date.
Jo - the £17k is all inclusive, ie hospital stay / anaesthetist etc. I gather it’s the surgeon’s fees which are above their allowance by about £1500. But if it speeds things up I can live with that. Have been in contact with his private secretary and she’s going to see what she can arrange. However, because he wants to do the surgery at an NHS hospital - and it’s one without a private ward - it may not make much difference time wise.
Kim - great to hear you’re recovering well. Oh wow, a cleavage, I can’t wait!!!
I had my diep done at privately at NHS hospital too, although it did have private rooms I’m sure even on NHS you may get a room on your own because of the care needed - dont think diep’s are done at private hospitals because you need specialist care from nurses trained in this type of recon because they mointor the new recon very closely making sure the bloody supply is ok for the first 48hrs.
There may not make much difference apart from having your op cancelled at the last min if on the NHS.
Good luck whatever you decide and I would still shout at your insurance company to see if they will reconsider their allowance.
I’m intrigued by what you say about negotiating. I’d have no idea where to start. I’m not sure I want to negotiate with the surgeon - for obvious reasons I want to keep him happy - but I’m interested in talking to the insurers. What tack did you take with them?
I negotiated with my surgeons practice manager, my surgeon doesnt like discussion his fees, I explained to the practice manager that my insurance had a shortfall at the time of £1000 and would they consider meeting me half way and reducing the surgeons fees by £500 and it was not a problem at all, so I got £500 off the surgeon fees. I rang a few plastic surgeons around the country who specialise in breast recon to find out what their fees were for diep recon - you can get sugeons details of national registrer of plastic surgeons, (sorry cant remeber web site) all the fees were above what my insurance were offering for this procedure and my insurance pay “what is customary and resonable” I asked them to re-investigate the allowance for the diep (you will need to speak to a manager at your insurance, make sure you get names and make notes of what is agreed and always ask them to confirm any actions in writing) as a result of my insistance the fee was increased for this procedure and not just for me but all the insurance customers.
Gosh, this waiting list lark is a game isn’t it? I went on the list for diep two months after my rads finished (4 months after mast) was told the wait was 6-9 months. In that time the services were transfered to another hosp (Royal Free funnily enough!) and I ended up waiting 13 months and having op cancelled three times during that time! Finally had diep in April this year - now waiting again for reduction/ uplift/nipple recon. Had date of 5th Nov but just found out that too has been cancelled and senior reg tells me that consultant probably not now available till next year! Am trying to go the private route for the last bit now as I really don’t want to wait till next year (now 2 and a half years since dx) and don’t want to change surgeons. Senior reg has offered to do it quicker but I’m not sure about changing surgeons at this stage. What a bloomin’ performance we all have to go through, eh?
Serenity: Oh great, more waits ahead if I want the two sides to balance. At the moment I’m just hoping they’ll be “good enough” - I want them to look real under clothes, am not planning to go topless - but I know they may not. Grrr, one thing after another.
Jo: thanks for the information. I’m going to give it a try with my insurers! From what the surgeon said about the shortfall (it was less than he’d expected) I suspect his secretary has already reduced his fee a bit.
Gotta grin about something!!