iv got my appt at SJH through, the day after i start my new job so i may have to rearrange it… will be interested to see if he suggest pig skin recon or tram flap.
still not 100% sure im gonna go down that route but would like all the info before making my decision.
wilson i hope somebody can answer your question.
Lxx
Just to let you Ladies know | eventually got a letter back from SJH to say basically…yes the system is rubbish…but there’s nothing I can do about it. Ill pass your letter on to the admin blah blah blah. So no help at all.
I only really asked him if he could tell me what kind of notice I would get of an op…
Trying to forget about it in the meantime…swines
Heh Ho, worse things happen at sea, hope you are all well xxx
Hello Ladies - I have just found your thread - I haven’t been on this site for ages but occasionally I feel the need to go back and see if anyone is having the same problems as me! I had a MX with immediate free tram flap in Aug 2008. Unlike all of you who have had long waits for surgery after previous treatment I had my surgery within 7 weeks of initial diagnosis so it was a fairly traumatic summer this time 2 years ago. The outcome is pretty good - he did a nipple graft at the same time so I won’t need any more surgery. I had hoped for some other lipo work to improve a flat breast mound but he is reluctant to do ‘unnecessary’ cosmetic surgery. I had a seroma in my tummy which needed regular draining for 6 months but eventually emptied itself. After nearly 2 years my tummy is still tight and uncomfortable and I think has a lot of adhesions - I seem to have a ‘muffin top’ along and above my 18" tummy scar (Yes - I did measure it!) which isn’t getting smaller. After buying some bras in Nicola Jane in London I am finally comfortable but struggled with finding the perfect bra for ages and all I wanted to do at night when I came home was take my bra off.
So - best of luck at St Johns - on the whole it was good and I have a good result - I can wear low cut bras and tops and could wear a bikini (If only I was not in my 50’s!)
i had my appt on the 11th said im too slim for tram flap but can have LD with implants or adjustable implants alone.
wasnt really thinking about doing it soon as Prof told me there was no hurray for prophylactic surgery as id had bilateral rads which would protect me from further tumours for another 6 years.
Mr said that was just statistics and with 2 separate BCs and being a brca gene carrier it was more a case of when i got another tumour than if i got one… and that id been lucky so far in that both tumours were treatable but that may not be the case next time… so hes kinda convinced me that i need to have the Mx but just unsure what to go for as seems to be risks and benefits to both.
the annoying thing is iv just started a new job and dont really want to start taking loads of time off, so this is kinda making me think implants… but even then iv spoken to some people and it has taken them 8 weeks to recover from them.
Lx
Hi everybody
Just wondered if anyone who’s been to see their surgeon at SJH has had any contact re: dates etc. I was there Feb this year and am still waiting 
…
Hi everyubody
I am also waiting for surgery at St Johns. I am hoping to have reconstruction by Tram Flap method. I had my appt in Feb 2010 and had heard varying things about the length of wait. I telephoned the Waiting Times Office and was told it is about 11 months to 1 year. I felt a bit disappointed as I had hoped to get rid of the sweaty, hot, heavy prosthesis by the summer, but looks like I will just have to be patient.
Happy waiting
Carolyn x
Hi again,just to let you know I popped in to SJH as I was there to get a mouth guard fitted, to stop the stress of waiting for the recon continuing to make me grind my teeth so much I have a permanent headache…anyhooooooooooo
The Breast care nurse ther told me it was now about an 18month wait! which would take me to april nest year, unless they move the goalposts again.
I’m going to write to my MP to see if he can help get some clirification on the waiting times
So we’ll see if the waitng list for the psychiatrist that I need because of the waiting list for surgery is any quicker…so sorry to be the bearer of bad news to all that are waiting…let’s hope time speeds by
love to all
Gillxx
Gill,I’m absoutely gutted to hear that. Is that for one particular ps / type of reconstruction or is that the time scale for everybody waiting for surgery? x
Have just got an appt through for Jubilee Hospital in Glasgow. Anyone been there?
im having bilateral Mx with implant recon… saw PS in may and going back to see him again in two weeks but in the meantime i saw my breast surgeon and he said they could fit me in for august but im best waiting till the end of the year as my boob is still a bit swollen from rads…
not sure if they make you wait longer for a delayed recon than if you are booked for a prophylactic one… im a brca 2 carrier.
wilson had you asked to be referred to GJH or were you still expecting to hear from SJH?
Lx
Hi Lulu, No I hadn’t asked. Apparently central booking look to see where they can send you to save waiting times. Took advice from St John’s and surgeon who done my mx at my local hospital and they both said go to St J’s so that’s what I’m doing. Think it will be worth the wait. Go back to St J’s next month to discuss things so hope to get an idea how long I’ll need to wait.
All the best for your op.
x
Anybody heard anymore about the waiting times for Tram flap surgery at St Johns Livingstone. Time doesnt seem to be moving fast enough.
Love to all
Carolyn x
Hi Carolyn
I havnt heard anything either, though I did contact them a week or so ago to say Id like to be considered for Jan next year, and they said that was okay for them. It is frustrating though when you are all geared up waiting for the call.
Im going to the BCC reconstruction event in Livingstone on 7th July-there will be someone there from SJH, as well as folks who have undergone the surgery-maybe see you there?
Cathie
That sounds like a good event, can you just turn up. I think I will have my op round about the same time as you. That will be about 11 months from my original appt. Might see you at the wevent.
Take care
Carolyn x
i was at SJH seeing my PS yesterday… my surgery will be getting done at the western though as my BS doesnt tend to work at SJH…
all major ops that would require breast patients going to HDU or ICU for even 1 night are getting done at SJH as the the breast theatre at the western is mid refurbishment and the HDU/ICU at the WGH is too far away from the theatres they are able to use.
i think because of this its probably putting a lot of pressure on st johns as ops that would have been getting done in edinburgh now have to be done there… also because the theatres are out of commission it means there is more pressure on the other theatres who are dealing with the overflow.
CR thinks i should be able to get my bilat MX and implants done in dec or jan, which would be fine for me and hopefully some of the post surgery & rads swelling will have gone down by then.
i had also heard about that talk at west lothian college… think you need to let them know if you are going to attend though… found a link about it…
breastcancercare.org.uk/about-us/our-services/local-support/information-sessions/breast-reconstruction/breast-reconstruction-livingston
Lxx
Hi Ladies in waiting!
well…quick resume
mx in 2008, chem till dec 2008, imediately asked for reconstruction.waited till july 09 to see consultant, refered to SJH in september, told op would be in Jan 10. Heard nothing so started hassleing them, told it would be 1 year, then told it would be 18 months etc etc
I have now contacted my MP who is being very helpful and has written to SJH for clarification.
I got a copy this morning of the letter he received from SJH and I am astounded!!
They have blatantly lied about the information I have been given. They say I “elected” to wait though I had been offered another surgeon…which is outright nonsense. They also say in THEIR LETTER TO HIM that my surgery is scheduled for March, though it’s the first I’ve heard of it.
I am resigned to the wait now but want to proceed with my complaint in the hope it will help others further down the line. It’s ridiculous that we all have been getting different information. It wouldn’t take much, just a letter after we have seen the consultant to say what the approx waiting times are, who we should contact with any queries, and updates if the situation changes.
Not quite sure what the point is of seeing a consultant 18months before an Op, weight and fitness etc is quite likely to change within that time.
Invested in more stoopid ugly bras as I had been wearing the old ones to the bones in the hope I could get some sexy new ones soon.
All that nonsense apart, I am healthy, happy,loved, and business is good. 
Take care everyone
Gill
I had mx and recon tram flap free flap op last oct in st johns xxx my dad recently stayed in golden jubilee and it’s stunning I wish I picked it but didn’t know anything bout it then boo
It’s been a long time since I was on but there has been some news…frustrating news but all the same.
I got a letter giving me 2 days warning of appointment with a different surgeon. He said he would try and fit me in in the next month or two. I asked if I could have a bit more notice as I run my own business…
I got a letter today giving me the date of the 15th Nov. About the worst possible date for me, but I am inclined to take it and suffer the financial consequences as I have been waiting so long.
I am still going to pursue the complaint in the hope it sharpens their pencils a bit with regards to keeping us all in the loop.
Hope all are well
Gill
Hi ladies
I too am on the SJH waiting list for tram flap reconstruction. I met my plastic surgeon in April and was advised that the waiting list was about 7 months so I was working on the basis that I would have it done by the end of the year. However I received a call from SJH last week to say that the waiting time is now about a year and I won’t be taken before April 2011. Disappointed but want him to do the op so just have to wait. I believe he is not doing as many tram flap ops hence the longer timescale.
S
Hi all,
I am contacting you all as I have had to edit numerous posts throughout this thread where professionals have been named. As per BCC’s Community Guidelines we don’t allow the naming of professionals as these forums are ‘open’ forums and can be read by anyone searching the web.
breastcancercare.org.uk/forum/community-guidelines-please-read-t25601.html
I am sorry if this seems a little late in the day as this thread has been running for a number of months but we have to adhere to our Community Guidelines. I trust you understand our reasons for this.
Many thanks,
Jo, Facilitator