reconstructive surgery

Hi
I was diagnosed with breast cancer in August. I am having FEC-T have had all FEC and just had first T so am now starting to look ahead to surgery.
I am going to have to have a double mastectomy and am trying to find other people who have had this, would also like to find people who have had double reconstructive surgery as I am finding it very hard to decide if to have reconstructive surgery or not. All help for and against would be greatfully received.
Thanks

Hi HJC, So sorry you are facing this surgery. I had a double mastectomy in September last year so have been living breast-free for just over a year now. I’ve two very neat scars and wear prostheses in an ever growing selection of mastectomy bras [Royce being my favourite brand]. I’ve had plenty of time to think about reconstruction and am now on the waiting list for a double DIEP next year. Happy to answer any questions. BB x

Hi, I am in more or less the same situation - I was diagnosed with breast cancer both sides at the same time in August last year and had a double mastectomy in October last year. I was told I could have reconstruction 12 months after the mastectomy. I have an appointment to see the surgeon at the end of November and I want the reconstruction as soon as i can possibly have it! I don’t like the way my body looks now, find it very hard to find suitable clothes to wear that don’t reveal the scars and lumps and bumps when I lean over and the bra’s are so expensive. I am waiting to find out what options I have for surgery and I’m counting the days till my appointment.
Thats just how I feel though, all of us are different and if you are OK with being breast free then find out all the information you can and way up all your options before making a decision. I wish you well,xx

Hiya,

I had a double mx last year and had expanding implants as a temporary measure as I knew I would be having radiotherapy. That was in Feb 2010, I am now due to have my final reconstruction in a couple of weeks. I did initially want to have the DIEP procedure done, but after having the rather long op of the double mx, I am going with having silicone implants instead. I am hoping the recovery time is much better than last time.

I would say if they also offer you the temp implants, it is worth it just to have a bit of shape, but mine are not perfect as PP said, when I bend over you can see one side is flatter than the other.

Good luck with it and the best tip I can offer is to make sure you have lots of button down the front tops :slight_smile:

Paula

Hello,

I had a double mx 2 weeks ago and although every surgeon I spoke to recommended delayed reconstruction as I’m having rads, the thought of being flat chested upset me too much, so I pushed for temporary expanders. Am pleased so far - but it’s early days!! My plan is for a DIEP recon - but if I’m happy with the expanders once they’ve been expanded fully, maybe I’ll go for implants like Jbug as I am really worried about the length of op and recovery time for the DIEP.

However, it sounds like your question is about whether or not to have any recon - so whether to live breast free? Only you will know whether you would be OK with that. I know I wouldn’t as the thought was really distressing. But that’s just me and I know many women on here are content being breast free and one of the ladies I met at my hospital has opted for no recon and doesn’t bother with prostheses either.

If you’re having rads, they can affect any immediate recon, so the recommendation would be to have delayed recon anyway. So if you’re wrestling with whether or not to have any recon you could always wait, see how you feel and then have the recon at a later date. However, if the issue is more WHICH recon to have then it is very individual which one is best. There’s a really good PDF that Staycalmandcarryon put on the forum. I’ll find it and pop it on here.

Good luck with your decision.

x

viewtopic.php?f=27&t=33034&p=571609#p571609

Hello Sandytones!

I would be interested in the staycalmandcarryon thread you mentioned. I could not find the link connection you posted. Where should I look for it. I’m also going to have reconstruction on my right breast, hopefully if all goes well with my scan on 3 November. So I would like to read more. I find everyone is different but in some ways we can understand each other more than people who have no experience or contact with cancer.
Look forward to hearing from you.
Hamlet
XXX

Oops! Sorry! Does this work:

share.breastcancercare.org.uk/forum/viewtopic.php?f=27&t=33034&p=571609#p571609

Hello Sandytoes!

Sorry got your name wrong! Yes the link is working now, thankyou. I shall read the parts which are relevant to me but it all looks easy to understand in laymans terms. I’m not one of these people who knows techical terms so should be good.
Hamlet X

Hi
I had a bilateral mastectomy on 1st Sept this year and one immediate breast reconstruction (the side least likely to need radiotherapy) and the other side has a straight mastectomy scar at the moment.

I think the comment that everybody is different, feels different and reacts differently really does apply.

I can tell you that although I still have some discomfort due to the reconstruction (Latissimus dorsi) that is not going to put me off getting the other side done when I am through with chemo & radiotherapy.

To my complete surprise I feel most self conscious when I am wearing my prosthesis - I think that is because I notice it more (and start worrying about how it looks) whereas when I haven’t got it on I don’t even think about it. Of course I choose my outfits carefully - baggy or layered tops hide a lot!

It might also be because I can only wear a bra (and therefore my prosthesis) for a short period of time because I’m still a bit swollen and don’t want to risk damaging the port of my expandable implant (which lies just under the bra band) - so I am bra-less most of the time. It is amazing what has become normality for me.

Finally this was all a bit of a rush for me from initial diagnosis (which was just one sided with the potential of a lumpectomy) to getting the double diagnosis so the reconstruction decision was a bit hurried - I might not have gone through with it if I had had longer to think about it as it sounds such as massive operation - but I have no regrets.

Sue

Hi Everyone
thanks for your comments they are very helpful I will be having Rad on both sides after the op so waiting and seeing is my best option I think. It has been very interesting hearing your thoughts and has helped me a lot
Thanks

Hello HJC,

I started writing some long rambling post in reply to yours but have lost it somewhere! So here is a second attempt.

I had bilateral mx and recon with implants back in December, but then had a recurrence this year and have now had to have one of the implants removed. So I have had the experience both of recon and of being flat (unfortunately, in the wrong order…). So I now have an implant on one side and am flat on the other.

The bilateral mx and implant recon surgery lasted 6 hours and I was in hospital for 3 nights. The recovery was ok but tough.

When I first had the recons it was almost unthinkable for me not to go down that route. But now that I have lost the recon and have only the scar on one side, I have found that I tolerate it pretty well mentally and physically and have come to accept it ok. I am also seriously considering removing the remaining implant and just going flat and not even bothering with a prosthesis (indeed a lot of the time I don’t wear one now) or a recon. I never thought I would come to this point but have found I have adapted to the circumstances. I am not sure that I want any surgery that involves any other body tissue and, now that I have had rads, another implant is out of the picture too.

I think what I am trying to say is that, with all you already have to go through, your decision not to do recon now seems to me to be a really strong and beneficial one and will leave you plenty of time to take the right decision for you in due course about what type of recon, when and if at all. I would not have been able to take that point of view last autumn when I was first diagnosed, but now I think there can be some real benefits to delaying recon.

All the very best for the months ahead,

Claire2010