Whilst waiting for replies you might find it helpful to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.
You have every right to be upset.
I had immediate recon by DIEP Flap in March at the Royal Marsden in London. My surgeon was Mr James, he has done a great job. The head consultant is Mr Harris. They are both lovely, very understanding. The Marsden does not work by postcodes so it doesnt matter where you live. maybe you could try anf get a referal to them?
I really hope you get the support you need
I had a delayed reconstruction - about 13 months after right breast mastectomy.
I opted for an LD flap, and whilst the plastic surgeon warned that this could affect my tennis playing (in particular serving, and also taking the racket back for my slice backhand), I have had absolutely no problems whatsoever and was playing tennis 6 weeks after the op, and back at yoga 3 weeks after the op.
I suffered no pain. With the LD flap, I did not even need a paracetamol, let along the morphine which I was connected to (to use if I felt the need).
Simultaneously, the healthy breast tissue in the left breast was removed and replaced with an implant, and the main reason for this was to create symmetry with the reconstructed right breast.
However, the result is not nearly as good as the LD flap breast, and when I saw the plastic surgeon today for a routine check-up, I mentioned this (and he could see it for himself), and I am going to have an LD flap on the left breast, that is how happy I am with the result.
So I hope this gives reassurance to any of you out there deciding which type of recon to go for. The DIEP was never an option for me (although it was offered), and I appreciate that some of you out there would prefer this and it may be considered more appropriate for you for certain medical reasons.
Hope this helps.
So glad your getting what you want. Fingers crossed it wont be to long to wait.
Just to let you know I saw my new ps today and he said yes to an immed recon using DIEP flap. Should get to know when next week. Am so relieved - that I'm getting my preferred option and that all the explaining why is now over!
I'm so glad that it looks like you're getting your DIEP now - I just wanted to say I've had 2 immediate recons, one DIEP and one IGAP (bottom) and they were both done by Elaine Sassoon in Norwich. I had absolutely NO problems with either the ops or the recovery, though the DIEP recovery is longer. You just have to take it easy, rest a lot and don't put too much pressure on yourself to get back to "normal". For me the immediate recon was very important and I'm very pleased with the results.
Good luck with your op - I'm sure it will be fine and I hope you are pleased with your recon.
Just an update from me too. I also am feeling much better now. My original ps really pulled out the stops and amazingly managed to get me an appointment at another hospital where they do immediate recon with the diep flap at the end of last week. I went to see them and they are willing to do it, within a month, subject to a couple of checks!! I go back this wednesday to see the ps there, but have already seen the breast surgeon and registrar who both agreed it would be OK. The hospital is much larger than my local one, and do this sort of work all the time, so I also feel I am in greatly experienced hands.
So I'm feeling much more positive about the whole thing, though the thought of the surgery is very scary. All of it is scary though, but at least this way I feel my feelings have been taken account of. I've also decided that if it turns out I can't have the diep flap afterall, and have a LD flap, then that will be Ok, because I'll know its for medical reasons. Throughout this I have considered and reconsidered the idea of having a "simple" mastectomy and recon later - in some ways this would be much easier - simpler shorter op, no complications if I did need radiotherapy, quicker recovery and getting back to work etc - however every time I've thought of this, I've come up against how hard I would find it to be without a breast of some sort. So for me personally I think at the end of the day when I have the recon would be more important than the type. And I am aware I am taking the risk of messing up the recon if it turned out I needed radiotherapy. The consultants think it unlikely I would need further treatment, but obviously no one knows for sure.
Thanks for all the support ladies during quite a rollercoaster of a week last week!!!
And Freddie I'm really glad you got a result as well, you sound "happy" with the advice you've been given - that this is the right thing for you, and I think it really helps us deal with the enormity and scare of it all when we are in agreement with the treatment we are being given.
Hi Lyra et all,
Just had my referral today and thought I'd share the wisdom of my consulant with you as it may/may not help you.
Following my two wle's and still no clear margins as you know I've been advised that a mastectomy is necessary. I want immediate recon. I too preferred the sound of the DIEP method. The consultant I saw today said she thought this was ideal for me and would be happy to do it but............
She says that she would prefer me to have the mastectomy first with a temporary implant. This would allow for them to thoroughly check that there is nothing more sinister lurking around anywhere.She also said that if the mastectomy showed some radiation would be required then it is not good to do this on the reconstruction from a DIEP as the fatty bit goes all funny.As well as this, I'm also having the genetic test next week which mght lead me to a mastectomy on the other side too.The DIEP can only be done once so it makes sense to wait.
I know the downside of this is more op's but eventually at least I'll have what I want. The photo's she had were amazing too,
Have you had any further thoughts?
Love Freddie xxxxxxxxx
The trouble with reading forums is that it is often the people with the most problems that post on them and therefore you may not get a completely unbiased view.
There are thousands of satisfied women out there who have had the LD flap and are getting on with their lives. They have had no problems and have not gone online to forums such as this one seeking reassurance, and so are not here to tell you how pleased they are.
Every type of reconstruction has its pros and cons and not every type of reconstruction is suitable for everyone.
Even though I had mine done at a London hospital that offers every type, I had a limited choice due to my body size, being a smoker, having had bad radiotherapy burns 15 years previously etc.
I had the LD flap done 3 months ago so it is early days for me. I too didn't like the thought of an implant, but then thought "Oh well, every wannabe celebrity pays thousands for these things!"
I'm in the process of being expanded at the moment, the breast looks a good shape and although I had a very large flap of skin taken from my back, I am not having any problems with it.
I believe that Elaine Sassoon's NHS list is currently closed to out of area patients. She has had a few health problems, mainly through overwork, and so is trying to decrease her workload.
You can mail her secretary via her website if you want to be 100% sure.
Hi rosie - just lost my comment. Don't want to distract from lyra's quest for immediate diep, but just wanted to say that Elaine Sassoon in Norwich does both buttock flap type ops (IGAP AND SGAP, that's buttock crease and higher on the buttock). There was mention I believe of someone at St Thomas's London, and there may be one or two others. There are even inner thigh flaps, and others, if applicable though not many done.
I had DCIS eight years ago - immediate reconstruction with Becker implants which unfortunately ruptured last year. Like you, I was faced with the choice of a DIEP flap or LD flap and chose the DIEP. I didn't want implants again and I didn't want more surgery in the future, as sometimes the implants need to be replaced. I had the op about 4 weeks before Christmas last year and have to say, for me, it was quite a hard op (harder than the mastectomy) but worth it in the end. Some people sail through it - everyone is different. I'm in Hertfordshire and had mine done at Bishopswood Hospital in Northwood - my PS works at the Royal Free Hospital in London for the NHS. Not sure if you have private healthcare or NHS. I have read some really positive threads about a lady PS in Norwich who is supposed to be fantastic. If you read through some old threads you might find her name and she also has a website. Apparently she does the op with another plastic surgeon so the operation doesn't take so long. I just need a small op now to reduce the DIEP side and for the nipple implant and am really pleased with the results. I also suggest you ask to see someone who has had the DIEP and the LD flap before you decide. I saw an older lady who had had a mastectomy with immediate DIEP reconstruction and her results were fantastic - I couldn't even see any scars because they used skin saving surgery.
Hope you don,t mind me butting in on this thread. Haven,t posted for a while, but regularly browse the reconstructions. I am on my ps surgeons list for an ld with implant, but am getting increasingly concerned about the negative responses to this.
I wonder if anyone has researched the recon where they use your bottom, either top bit or underneath bit and where in the uk they actually carry this out. Being slim seems to cut down your options for recon. They all seem to have their problems though, but don.t know what the problems are for the bottom one. Might be one to ask your surgeon about lyra?
It's good to hear different views and both sides of the story. I'm in Kettering and it's a relatively new service here, but the PS is from Leicester and does sound experienced. It does feel alot to be entrusting to someone.
I have had the LD flap, with expanders had bi-lateral mx with immediate recon in dec 08. Im in doncaster and i know they do all the different surgires here. My surgeon is a woman and the results are really good, i was back driving after 4 weeks. My recovery was really good and i dont have any problems with my back or my boobs. I just wanted to give a positive experience of LD flap. Good luck with what ever you decide to do.
Glad to see you are doing your homework.
I suppose there must be at least some urgency to get the cancer out but they do sound supportive of your needs.
I would give the LD flap a verywide berth if possible - last resort. DIEP as immediate reconstruction is a tall order because people normally have to wait for this.
Personally I would have found things hugely less traumatic with an immediate reconstruction, hugely. That said if you CAN have a DIEP and you are not going to have radiotherapy (do you know?) then you will still get a good result from DIEP if it's "delayed" as they term it. I can also understand not wanting to wait.
I would NOT go down the LD route just to get something in a bra, it is not the best technique and you can be left with physical problems on your back, shoulder etc. etc. It is a poor compromise in my opinion. That isn't to say some aren't successful and good but not first choice if you have alternatives.
Stand your ground as long as you can, hold out for what YOU want and if they cannot do DIEP as immediate then wait for it.
Good luck and keep us posted.
I've been posting stuff on the DCIS thread, but have some conerns about reconstructive surgery, so thought I'd make a request for info here. I was diagnosed 6 weeks ago with DCIS in 2 areas so need a complete mastectomy. The doctor I saw wasn't keen on an immed recon so a mast was booked for june 2nd. I asked to see the consultant (away for my appointmt) and had to wait over a week for him to return from a conference. Finally got to see him and he was much more positive and agreed to an immed recon and skin sparing mast. But the plastic surgeon was away on holiday, so have had to wait a further 2 weeks for his return, and have just seen hm today.
I'm pretty upset actually... He has also agreed with the immediate reconstruction but they only do the LD flap here and I would need inplants too. He talked of expander ones. When I asked about the DIEP flap and being referred somewhere they could do that he said there were so few places that would do that as an immediate reconstruction, and even if he referred me to one of these (he mentioned possibly Nottigham, Cheltenham, Norwich, London) he said there was no guarrantee the PS there would agree to do it, but might still offer me an LD flap. I've read lots of negative comments about the LD, and don't like the sound of muscle for breast mound and really don't like the sound of inplants - the latter sound like high maintenance with the need for replacing. So I'm feeling there is a recurring theme here - being told I do have choices and they will explore the options with me - but actually there really only is one possible option. To be fair, the PS did spend time with me talking about it, and has agreed to make enquiries about where could do it, but I really don't know what to do now. A dilemma - do I have an immed recon, but with a reconstruction which is'nt my first choice? This would be quicker. Or do I search for an immed reconstruct with a diep flap - but god knows how long that would take and where it would be? He also said, when asked what he would advise a close female relative, it would be a simple mastect and diep recon LATER! So, now I don't know whether to relinquish the immed recon and just go for the masect afterall - which I was booked to have just a week ago!! Feel like I'm going round in circles anf getting nowhere. Seems to be so much waiting. Now I have to wait for the PS to report back about where if anywhere they do a diep immed reconstruct. They also kept emphasising how greatly a referral would delay things and how difficult the "logistics" are for scheduling immed recon especially the DIEP type.
So if anyone has any info about best places for DIEP immed recons please let me know. Also if anyone has had a POSITIVE experience of a LD flap let me know.
Sorry to rant here, but the helplines are closed and I started phoning round a few hospitals but couldn't get any info.