Want my reconstruction off

elisebutt65

Some of you may have read my previous posts about breast cancer, treatment & recovery. I've been back at work full time since September now and it's been 18 months since I had the diagnosis following a mammogram.

Anyway, when I had my masectomy, I had a reconstruction at the same time. It's healed well but I'm not happy. I just want it off as it feels totally alien. Oh has said it's up to me & I'm seeing my surgeon in June.

Just wondering during if anyone else has done this? It's just that my boob has no feeling and it feels like a huge limpet stuck to my chest. I am also considering asking the surgeon whether she could take the other one off so I'm not lopsided and then getting tattoo-ed later. I would also have more peace of mind as I'm constantly worrying about it reoccurring in the other one.

Alikay

My mum wishes she'd never had a reconstruction due to similar issues. She was a full busted lady and the skin is paper thin over a large and lumpy implant that has never felt right - various lumps of internal scar tissue occasionally give her a bit of pain too. She hasn't asked for further surgery as she was so ill during the mastectomy and implant ops (infections, build-up of lymphatic fluids, burst stitches etc) that she can't face it, but has always said that if she had cause for breast surgery again she'd definitely have the implant out.

If you can't get on with yours, elise, it's got to be worth looking at having it taken out and the other side removed, then at least you can even up with matching prostheses: They've come on a lot in recent years, and even if your NHS trust don't offer much choice, you can get others privately, and find a model you're happy with.

On the negative side, all operations carry some risk, and a second mastectomy is a major operation, and runs the risk of getting lymphoedema in your arm which is pretty nasty to live with.

Good luck whatever you decide, and it's great news that you've beaten the cancer and are back to work

whodathunkit

I think that's one of the problems with having a reconstruction done at the same time as a mastectomy, you must be very aware of the different way it feels. I had mine done a year afterwards and I was so glad to get rid of the prosthesis that I'd've been happy even if it had been less successful than it was.

Apparently the highest satisfaction rate is from women who haven't wanted to carry on with a prosthesis so you might come to regret your decision later if you went down that route - they're not all that comfortable and really limit what you can wear.

Jacqu79

What kind of reconstruction did you have?

I had an immediate DIEP reconstruction, which uses tissue and fat from the abdomen to form the new breasts and although I have a few issues with them cosmetically, I'm very happy with them. They feel soft and warm, just like normal breasts, but I don't have full sensation. Phantom itching is still the bane of my life 3 years post surgery!!

My sisters have both had reconstruction with implants and I know one of them (who had the one step procedure) feels like you, that they are alien and cold all the time compared to the rest of her body, turns out there's a problem with the implants and she has to go and get it sorted.

I chose DIEP as I didn't like the idea of something 'alien' in my body. My sisters chose implants as the surgery wasn't as major (that's not the right word, as of course a mastectomy is major, regardless of the type of reconstruction, I just can't think of the right word!) but although my recovery was longer and I've had more set backs, I feel I made the right choice. My other sister has implants, but didn't have the one step procedure where they put the implants straight in following the mastectomy, she had expanders put in, then another op for implants, then subsequent trips to have them filled, she's happy enough with hers.

Speak to your surgeon, breast care nurse and post on breastcancer.org forums and I'm sure you'll get lots of advice from people who have been in your position.

Good Luck.xxx

Tiddlywinks

Have you spoken to a counsellor at all?

I think it would be worth talking through how you feel as it may be linked to your feelings about the cancer... it may be that it's not the implant that's 'alien' but that you feel different and the implant is kind of your focus because it's new.

Sorry if that sounds jumbled... I hope you find some way through this.

elisebutt65

My reconstruction was partial. I had an expander put in under the chest muscle, to save the skin for a later proper reconstruction. So I still have to wear a prosthesis. It's like I have the worst of both worlds.

It's uncomfortable at best and painful at times where I have developed scar tissue where she(my surgeon) tunnelled through the muscle. Feels like I have a tight bra on all the time, and we all know how good it feels when you take it off at the end of the day, but I can't!

The, if I can have them off and be even, I don't give a stuff about wearing prosthetics as I've had many years of being an f-cup, it would be a relief to never have to wear a bra again, and I've seen some gorgeous tattoos to cover or enhance the scars.

But this is all way in the future as I have to lose some weight before I can have more surgery anyway.

whodathunkit

elisebutt65 wrote: »

My reconstruction was partial. I had an expander put in under the chest muscle, to save the skin for a later proper reconstruction. So I still have to wear a prosthesis. It's like I have the worst of both worlds.

It's uncomfortable at best and painful at times where I have developed scar tissue where she(my surgeon) tunnelled through the muscle. Feels like I have a tight bra on all the time, and we all know how good it feels when you take it off at the end of the day, but I can't!

The, if I can have them off and be even, I don't give a stuff about wearing prosthetics as I've had many years of being an f-cup, it would be a relief to never have to wear a bra again, and I've seen some gorgeous tattoos to cover or enhance the scars.

But this is all way in the future as I have to lose some weight before I can have more surgery anyway.

Is the plan for you to have additional surgery on the other breast? I had a breast reduction on the other side because, as my surgeon said, they can't match the droop!:eek:

Have you discussed future surgery with the cosmetic surgeon that would do the operation so that you know what to expect or is that in the future as well?

Jacqu79

elisebutt65 wrote: »

My reconstruction was partial. I had an expander put in under the chest muscle, to save the skin for a later proper reconstruction. So I still have to wear a prosthesis. It's like I have the worst of both worlds.

It's uncomfortable at best and painful at times where I have developed scar tissue where she(my surgeon) tunnelled through the muscle. Feels like I have a tight bra on all the time, and we all know how good it feels when you take it off at the end of the day, but I can't!

The, if I can have them off and be even, I don't give a stuff about wearing prosthetics as I've had many years of being an f-cup, it would be a relief to never have to wear a bra again, and I've seen some gorgeous tattoos to cover or enhance the scars.

But this is all way in the future as I have to lose some weight before I can have more surgery anyway.

Speak to your surgeon about the pain from the scar tissue. I have this too in my breasts, but more in my abdomen at the donor site. I was told they can remove problematic scar tissue, but never looked into it any further, as I can't face any more surgery any time soon. I'm also still to have stage 2 of my surgery to tidy things up and balance things a bit, but again, I can't face it. I was in hospital for nearly 2 weeks after my surgery and it's put me off for life lol!!

As for the feeling of having a tight bra on all the time, I still have that over three years later, and from speaking to friends who had surgery before me, it never goes away, you just get used to it.:(

http://community.breastcancer.org is an amazing site, with so many people who have been where you are. I get all my info from there and it's the first place I go to when I have a problem.

whodathunkit

Jacqu79 wrote: »

Speak to your surgeon about the pain from the scar tissue. I have this too in my breasts, but more in my abdomen at the donor site. I was told they can remove problematic scar tissue, but never looked into it any further, as I can't face any more surgery any time soon. I'm also still to have stage 2 of my surgery to tidy things up and balance things a bit, but again, I can't face it. I was in hospital for nearly 2 weeks after my surgery and it's put me off for life lol!!

As for the feeling of having a tight bra on all the time, I still have that over three years later, and from speaking to friends who had surgery before me, it never goes away, you just get used to it.:(

http://community.breastcancer.org is an amazing site, with so many people who have been where you are. I get all my info from there and it's the first place I go to when I have a problem.

Perhaps I've been lucky but I've never had this and it's never been suggested to me that this might be the case. My surgery was done using the latissimuus dorsi muscle and I've been very pleased with the result; my implant has now been in for over 26 years.

http://www.macmillan.org.uk/Cancerinformation/Causesriskfactors/Genetics/Risk-reducingbreastsurgery/Backtissue-reconstruction.aspx