Am I being lied to ?

I had a double mastectomy with immediate reconstruction (skin sparing) as my surgeon said I didn’t have enough skin/muscle (?) for an LD.

The site became infected and the external wound would not heal so they removed the implant six weeks later.

One surgeon said they would reconstruct after six months, or twelve, if at all. My surgeon said they would reconstruct with an LD but would not give me a time frame and said to come back in six weeks. I asked him what he wanted me to do in the meantime - put on weight ? “No, it’s more a question of muscle”.

My question is, how can they do an LD now, when they couldn’t before.

I think they are fobbing me off, and will continue to do so until I get used to being flat one side*, at which point they will tell me there is nothing they can do for me.

It’s only two weeks since the last op and I am still having a bath with my top on because I can not bear to look at ‘it’.

Hi mumjen,
I am as confused as you. An LD usually needs a small implant to make up the volume unless you have enough ‘squidgy bits’ as my surgeon called the area above my waist. I was lucky, even though I am only a size 12 I had enough tissue to make a 36b without implant. A skin sparing mastectomy keeps all the breast skin and you only need a small circle from the back to fill where the nipple was. I cannot see why, once the area has healed, why they cannot do another recon, but I am not an expert, you need to keep pushing for answers. Good luck.

Different surgeons seem to say different things. one of mine said I was too thin for an LD flap whereas another said something else. I think it is worth discussing it with more than one surgeon preferably at a breast cancer centre of excellence. nb I didnt have an LD flap or any kind of reconstruction in the end as I had breast conservation surgery and I thought despite the dented appearance post op more surgery wouldn’t improve things. since then they seem to be coming up with new ideas such as liposuction to fill in dents so I may ask again whether I can have something to sort it out

Mole

Thanks for replying absimum and mole, it really helps hearing what others have experienced.

How do you find out where these breast cancer centres of excellence are?

I won’t mention my surgeon or his hospital as I think I have just been really unlucky (three ops in nine weeks) and wouldn’t want to put anyone off who might be going to see them.

sue

I’ve seen two surgeons and they both recommended LD flap. However I’ve seen another one today and he advised to go for DIEP. And they all work in cancer centres of excellence!

My hospital, Derriford in Plymouth, is a breast care centre of excellence (my bc nurse told me not to say breast cancer, as they deal with other breast problems). At the time I was dx, in 2003, she said it was one of only 6 in England. There may be others now. Perhaps you could e-mail or call the bcc helpline, as they should have a list.

Liz.

I’ve taken your collective advice (what would I do without you all?).

As luck would have it I was scheduled for an appointment with the genetics team at the Royal Marsden Londo yesterday (because my family are all BRCA2) which was made before I was diagnosed in October.

They interviewed me by telephone and found a strategy to take over my case.

My hospital has failed to make any appointment for me re ovary removal, initiated May, reminded September, reminded December. So, the Marsden made an appointment for me to go to them next week for ultra sound and blood tests. Now I am officially on their books, they are writing to my hospital to say I would prefer my treatment to be under one roof.

Fingers crossed things will go smoothly from now on. My daughter went there last week (preventative care) and said they are marvellous.

Hi Mumjen

Have you considered a DIEP flap? I had one at the same time as my mastectomy, but you can have a delayed DIEP reconstruction. I’m really pleased with the result from mine, though I haven’t yet had the nipple reconstruction. I’m a size 10, so the surgeon wasn’t sure at first weather I had enough tummy fat, but I ate and ate from the time my surgery was booked and now have an equal sized breast and a lovely flat tummy (as the operation to ‘harvest’ the fat is like a tummy tuck). I do have a thin scar from hip to hip, but it’s flat and could be hidden by bikini bottoms if they’re not too skimpy.

I looked at lots of websites before I made the decision as to what sort of reconstruction I wanted so, if you haven’t done this yet, I would advise you to. Also, the breast care nurses at the hospital I’m at organise regular evenings where you can go along and talk to women who’ve had reconstructions done and see the results. That was very helpful and reassuring so, perhaps you could ask your breast care nurse about that too?

Best of luck with whatever you decide. Mx