I was supposed to go to St Johns in Dec but due to the snow just been to Edinburgh on Friday. It sounds like LD flap is the best for me and I was told it would be 18 weeks. Anybody got any info on this? How long in hospital, how long off work, how long till back to normal? I dont need the skin just the muscle to make up 2+ cup sizes.
Just wondering if any of you ladies waiting for recon have had a date or even an update of where they are on the list?
just another update to say I had my tram flap at St John's on the 18th Jan and all has gone well. Got discharged 1 week later (3 days ago) and getting better each day. Able to walk about (a stick helps to take the strain off my back) but sleeping and healing well.Nice to have a boob again and to feel human after the morphine haze!
Just thought I would let you know I had my Tram Flap reconstruction at St johns, Livingstone on Dec 14. Now 4 weeks later I am feeling very well, it is a big op (10 hours) and its a big op to get over, but I finally feel I am getting there. Reconstruction looks good and breast and tummy scars are healing very well. Good luck to anyone going through ops or treatment.
Happy New Year to you all
Love Carolyn x
Just read through this thread so I am pleased for you Carolyn after all the waiting you have done.
I am due to have a double mastectomy at the Western General Edinburgh on the same day as you after my lumpectomies last month failed to get clear margins. I am not having reconstruction however.
Good luck. I am nervous too. Will look to see how you got on when I am home from hospital.
Just dropped in to say I finally gor my appt for my breast reconstruction, it is on Tuesday 14 dec. I have been for my pre op check today and all went well. I have been waiting since Feb 2010 and it is almost hear, hard to believe. Quite nervous but ready to go.
I will keep you all posted.
Ah, I know that hospital, my mother had a back op there many years ago.
Good luck for Thursday and do let us know how you get on and how they do it. xx
WGH is Western General Hospital in Edinburgh.
I am due for lipofil and a new nipple in SJH on Thursday.
My surgeon at the local hospital thinks it will be Lipofill that they use with me but I dont know how long the waiting list will be for that. I stupidly thought that I would be able to get it done in my lunch hour (no, stop laughing at me please), I really did!
What does WGH stand for Lulu? I had my rads up at The Beatson which is fantastic.
HI Richard.... SJH is just as good as any hospital... its the only lothian hospital offering plastic surgery facilities for major breast surgery eg tram flap or LD reconstruction.
if its implants only then they can usually do that at the western.
BB as far as im aware the theatre at the western still isnt open yet so there is still quite a long waiting list for the major procedures as they are still going to st johns.
but i think the WGH theatres should be opening again soon.
I have just got an appointment thru to see the ps at St John's at Livingston. This will be my first visit but after reading all the other posts I am hoping it will all be over within the year.
Welcome to the forums, this is a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
I am sorry for encroaching on your forum, but I really don't know what else to do. In essence, my wife to be (next month) was diagnosed with breast cancer yesterday. She is under the care of the staff at St John's and, having only recently moved into the area, I am looking to see whether the level of care I hope she will get is something that St John's can deliver.
She is my world and this is something that has come out of the blue after a few months of upheaval (new job, new house, new location - wedding planning etc etc). We were finally getting round to looking forward to our lives together when we've been floored by this.
Any help or advice you can give will be more than appreciated.
All the best
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.
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.
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.
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
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
Hi Ladies in waiting!
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
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....
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.
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?
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
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.
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?
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
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
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.
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 😞 ..............
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.
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!)
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
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.
Hi has anyone had their expander replaced with an implant at St J's? If so what all happened e g how long were you in and more importantly how long did you wait?
Kind regards to all.
Gave the Hospital a ring and yes its about a 1 year wait, which is a bit of a bummer but it took me 3 years to make the decision, so just have to wait the time. I saw the consultant in Feb so it will probably be about Jan/Feb nxt year before I get my tram flap reconstruction. They did say that could change depending if they have any cancellaions.
Will keep you posted. Take care all
oh dear, what a disappointment though it was going to be this year. Just have to keep waiting I suppose. If I do hear anything I will let you know.
Hope you are all well
Good to hear from other members of the club lol! My initial appointment was in early Feb when I was told about 9 months, but was recently advised it had increased to 13 mths 😞 ,so the wait goes on.
Hope u are all well.
Hi all St johns ladies just wondering if anyone had heard anything about their surgery date. I am getting impatient, (i have only waited about 3 months)lol.
Take care all
Thats great news about your op. I am so jealous wish it was me. Keep us posted and let us know how you are doing.
Good luck and take care
Ive finally got the go ahead for the operation on Thursday from my Cardiologist. My heart is still a bit sluggish but will be okay for the op.
I will let you all know how the op went when i feel upto sitting by the computer again.
Thanks Gill and Cathie your comments are very much appreciated. I was initially told the waiting list was approximately 6 months but i have had a longer wait due to my heart problems. I have an appointment to see the Cardiologist tomorrow 9am so fingers crossed he gives me the go ahead with the operation, but the surgeon and the aneasthetist dosnt think there will be any problems as i am active enough ( never stop running after my 8 year old twins and grandchildren)
Well i will let you know what happens tomorrow.
just want to wish you the best of luck Lorraine. I hope it is all you hope for and goes well.
I wrote on the 15th March just asking him to clarify the situation and perhaps give me a guide as to what the waiting list MIGHT be..so far, no response. I am very dissapointed obviously and am seeing my own Doc on the 23rd so hope she can chase things or get me seen somewhere else.
Best of luck again, a friend of mine has just had her surgery there and is recovering nicely now.
What brilliant, exciting but scary news! Im pleased your long wait has ended. I can't help with you question about the op-Im waiting for a tram flap at same hospital ,Im sure someone will be along to advise you on here,and Ill be watching your experiences with great interest. Best of luck with your op.
I have finally got my date for my surgery, the 15th April. I cant believe its nearly here and starting to feel really excited but nervous at the same time.
I am having an LD flap with a chest expander implant, i have been reading some comments about the chest expander and im a bit worried about it as most of the comments werent very good. Has anybody got any good comments about this?
maybe I will phone and clarify too. Keep in touch with any further developments I anxiously look for an appt every day hoping my op will be sooner than 8 month.
Take care all
Good Luck Gill
Are your BCN's at St John's too? If they are I would call them & see if they can chase it up for you too. I've found them amazing & they've always come thru for me.
Carolyn, I'd heard the average just now was down to 8 or 9 months, but (edited by moderator) told me his list is around 16 weeks...I wonder if he's not long started operating at St Johns tho, as I'd always just heard of (edited by moderator)
Hmmm, all very curious that we are all getting different messages. I had a look at the 18week thing but it will not become legislation till Dec 2011! I am going to write to surgeon today and ask for clarification of the situation. Ill let you know how I get on.
good luck to all...