Reconstruction & Radiotherapy

Hi everyone,

I have recently been advised that due to radiotherapy my options for reconstruction are now very limited, particularly as I am also very petite. My surgeon is happy to refer me to a PS but he told me not to get my hopes up too much as he thinks I will be told that I am not a good candidate for recon.

I had a right mx in November 2010 and up until now I always thought that recon would be a pretty straight forward affair that would be available when my body had recovered from the bashing it’s had from chemo etc. I was very disappointed to learn this as I’m having great difficulty accepting my body as it is now and recon was to help me deal with it all.

All of this was really brought to the fore when I started looking for a mastectomy-friendly long evening dress for a ‘Posh Pink Friday’ event I am hosting at the end of the month. The choices are very limited from what I can see of my extensive online research, so I maybe the only person not in a posh frock on the day! :frowning:

Anyone else in a similar position?

Nymeria

Hi

I’m in the throes of Rads but had mx and immediate recon in June.

I researched lots and got a second opinion and finally arrived at a decision I was happy with, this being an LD with a small silicone/saline implant which has a port that can be used to inflate it if the rads shrink it. I know the risk of this but have been reassured that because of the LD muscle been in front this is a lesser risk. I was lucky as my consultant is a specialist in breast recon, meaning that she did the whole op (including full clearance) including the recon.

It was made bigger to start - to allow for shrinkage - and 2 weeks into rads still looks good. I’ve got 3 weeks to go, so I know there’s still time for things to change but so far so good.

Don’t be scared to ask for second opinions. I found a private surgeon from a Daily Mail article I found thru google. I think i googled ‘best breast surgeons’ since found out we could have seen him for free as he’s NHS (bum!) so you don’t always need to pay.

Best of luck x

I really wish I’d been able to have immediate recon but unfortunately my hospital doesn’t have a dedicated plastic surgery department so that wasn’t possible. My surgeon spoke very highly of the PS based at the hospital where I would have my initial consultation so it will be interesting to hear what they say. I do appreciate my surgeon being so honest about my situation but it has all come as something of a shock.

Nymeria x

Hi,

What reasons have they given you for not having a recon? Is it just your size? I’m only little (as kept being pointed out!) 34b and not enough fat in my tum to use.

One thing I’ve learnt is to not take the first suggestion as ‘red’. Where are you based?
X

Hi,

I have quite a lot of vascular damage from rads that they don’t think will get much better plus I am small - 6/8 & 30B. I am waiting until I see my surgeon again at the end of the year to ask some more questions. Right now I just feel so uncertain about it all!

Nymeria x

Oh - sorry, I’d read your post as saying that you were due to have rads and that because of this your consultant was being reluctant.

When you say 6/8 do you mean E+? that’s the same as me.

If you have the energy I’d really recommend getting different opinions, at least then you’ll know you’ve dine everything possible before reaching the final decision.

Good luck. X

Hi nymeria,

I had an mx in July with chemo and rads to follow. I was told that I couldn’t have full recon until after the rads because the rads would have damaged the recon.I wasnt given any option about it, I probably done more research because a few people seem to have had full recon at the time of the mx, even though they were due to have rads and it’s turned out fine. But I had a tissue expander put in at the time of the mx with a view to doing full recon at a later date. This is an implant which can be expanded over time with saline.

Sadly the implant was never happy and following a few complications I had to have it removed last week. Chemo has been delayed til it ws sorted out , and then I’ll have rads. I’ve been told I can still have recon but it won’t be until a year after the rads to allow the tissue to recover. And I’ll probably go for a diep recon. I have a really good surgeon and I go to the marsden so, perhaps wrongly, I’m inclined to accept what they say!

But I would certainly ask for a second opinion if the surgeon you’re about to see says you can’t have recon. The techniques that are available are astonishing, and in fact there are seminars you can go on. I’m afraid I don’t know
how find out about them, but the helpline on this forum Will probably be able to help you, or look at The Haven’s website, they sometimes have seminars or talks advertised. There are only two of them mind - one in London and one in Leeds. But there may be other places you can get info.

I would say not to give up! If you want recon then fight for it! I was extremely upset when I lost my implant and would be devastated if I was told I couldnt have recon, so I really feel for you.

Best wishes

Alison x

Hi everyone,

StayCalm - I should have said that I am a dress size 6/8 & 30B bra size. I hope that makes better sense. :slight_smile: I’ve had the works in the past year - mx, chemo and rads. The issues about recon surfaced when I had my first post-treatment meeting with my breast surgeon and I asked him about it. At that time I was just about to start investigations of a shadow on my lung which turned out to be bad radiation damage. When my surgeon phoned to tell me about this he reiterated that I shouldn’t get my hopes up too much about recon but that he would refer me when I was ready so that I could get advice from an expert.

Alison - I’m going to see what the PS says when I see him and if he’s very negative about it all then I will definitely seek another opinion on it.

Thanks, ladies! xx

Nymeria x

Hi Nymeria

I would say to you, speak to as many plastic surgeons as you can, to gather information and views on your situation.

The reason being, i had a tissue expander recon last year, following my mastectomy in September 2009. This was the only type of recon which was offered to me at that time.
It did not work so well, and i was unable to have a nipple recon even, as my skin was so badly damaged in places.

I was eventually referred to a very good plastic surgeon 30 miles from my home, and straight away, he said that the LD flap was my only option now. My previous surgeon disagreed with this.
I also saw a surgeon with expertise in lipofil, and discussed the tram flap with another surgeon.

Is your surgeon saying that he is not hopeful about you having recon because of your build and that fact that you are petite?

When you see the PS, ask about the possibility of the LD flap. Even the most petite of women can have it done i am sure.

Good luck…you will get there.

Naz x

I can’t comment on the vascular damage, that may have an impact, but I don’t see why being small is a problem. I had a delayed recon last year - wasn’t allowed an immediate one due to having rads - and had an LD flap with implant. I was a AA cup, I am very slim with no fat to spare anywhere, hence the implant.

All this information has really cheered me up - thanks everyone! I now feel better armed when it comes to discussing options with the PS.

I don’t feel like quite such a hopeless case now! :slight_smile:

Nymeria x

:slight_smile:

You are not a hopeless case - but a woman on a mission to get a recon!

xx

LOL - I’m definitely a woman on a mission! :slight_smile:

Don’t give up hope. I too am a size 6/8 & 30B & was told I couldn’t have a reconstruction. However I found a fantastic surgeon who performed an igap (tissue & fat taken from the top of my thigh) & I am now almost at the end of the process & just awaiting a final bit of lipofiling & nipple tatooing. It’s been a long road but definately worth it, I can’t wait to go bra buying again :slight_smile:

Nymeria,
Just finished my tidy up from an LD flap op, on Wed.
I did have really bad vascular damage caused by rads and initial surgery. My rads were Jan 08, but was still shrinking.
He’s just moved my nipple, informed me blood supply not great but nipple not in danger. The fact I had an LD flap in March enabled him to reintroduce bood supply to the area and I suffer alot less with cramps in my muscle wall.
I had a fab surgeon, but moved to my present one (PHI)as he specialised in akward cases…he also works for NHS (Based in NW)- they are mates it turns out!
He described me as non text book and made up as he went along… dont care how he got there, as Ive arrived!!
Blessing