Hi
I had a mastectomy in Dec 2014 followed by chemo & rads that finished in July 2015. I have always wanted reconstruction but couldn’t have an immediate because I needed rads. I am still awaiting surgery & wondered what other people experiences have been.
I have had pre op assessment and ct scan but at every appointment they say they can’t give me any indication of when it will be.
I’m finding this really gets me down as this is the final piece of getting back to being me ?
Hi Alison, so sorry that you’re stuck in the waiting game. I had treatment about the same time as you - mastectomy September 2014, followed by chemo Nov-April 15 and rads in July 15!
It’s unusual that you’ve had pre op assessment without a date for the op. What type of reconstruction have you gone for?
My story if it’s of any help to you:
I did have an immediate implant with my mastectomy even though we knew I’d have rads. Unfortunately it got infected during chemo so was removed. Then had temporary implant prior to rads which was replaced for permanent one in April 2016.
All that was done privately, then hubby changed jobs and went NHS from Jan this year.
I’ve put on weight since all my treatment and my implant was looking very pert and small compared to my natural one. I saw my surgeon in march this year and she referred me to a plastic surgeon. Because my diagnosis was over two years ago they had to put in an appeal for funding - have you been told this might be an issue?
Anyway, I finally saw plastic surgeon in July and he recommended a DIEP reconstruction (using tummy skin and fat). Either this or LD (using back muscle and skin) are best for radiotherapied skin as the skin can be too thin and tight to stretch and take an implant.
I was fortunate that the surgeon had a space at the end of August so I am now 3 weeks passed since my operation. The new boob is much better than my implant one, softer and more natural looking. The only down side is the scarring. I’d hoped he could have joined the flap to my mastectomy scar half way across the breast, but because the skin was like tissue paper he had to remove it so I have a circular scar right round the boob.
I hope you get a date soon. If you want anymore info on implants or DIEP please let me know.
X
Hi
Yes I’m due to have DIEP reconstruction and a reduction of the remaining breast so they are even. I’m feeling very frustrated as there has never been any doubt in my mind that I wanted reconstruction from initial diagnosis. I was really upset when they first told me I couldn’t have it and was afraid that I would struggle with the whole one boob thing. Truthfully I found the mesectomy fine and it’s ok living with one boob. I struggle as my remaining one is cup size G so my prosthetic is more like a small chicken!! ?
When I sat and thought about it all the surgeon did talk about funding for delayed reconstruction being an issue.
Sorry to ramble, I just feel like my life is on hold. Last summer I was told that my op was planned to be complete by April 2017.
I’m glad you’re pleased with the result and hope you continue
X
Hi Alison, my experience was that you have to chase, chase, chase to get what you want. My onco surgeon said she’d appeal for funding and organised medical photos to support my case, then it went silent for ages. When I chased her it was obvious that she’d forgotten to do the paperwork as having said “yes it’s all in hand they’ll contact you” she then emailed me to remind her what surgery I wanted!
I know that some people on this forum have reported that their NHS trusts have withdrawn funding for delayed reconstruction as it’s deemed to be cosmetic surgery!
If you’ve made up your mind that this is what you want, then get on to them and make a nuisance of yourself until you get the right answer!
It makes the world of difference, especially if you’re lugging a chicken around in your bra each day! You can use that to strengthen your case if it’s heavy and uncomfortable. When I met my plastic surgeon he asked if my implant hurt, when I said not really he responded with yes, so it does hurt? On a scale of 1-10 shall we put a 10?
They’re on your side and want to help you just need to remind them you’re still waiting as unfortunately there’s a lot of us out there.
All the best. Let me know how you get on.
X
Hi Alison, I had chemo first, then mastectomy September 2014 followed by radiotherapy. My experience has been completely different to yours. I couldn’t have immediate reconstruction due to my cancer being very aggressive and some skin involvement. I didn’t mind my mastectomy but hated being lopsided with my floppy 34dd. I wanted to have another mastectomy to balance me up but my surgeon insisted I research reconstruction. He was going to do an LD flap and implant but then had so many new cancer cases he didn’t have time. At this point I’d given up my job to prepare for surgery so he felt awful. He managed to get me on a waiting list for a plastic surgeon that specialised in flap surgery and I had my TUG reconstruction in October 2016. I am delighted with the result and what surprises me most is that mentally it has moved me on and I don’t have that constant daily reminder of cancer when looking in the mirror.
I’m not sure where you live but research other surgeons and if necessary ask to be put on their waiting lists. Hope you get this sorted so that you can move on too. X
Thank you ladies for your replies, it’s good to be able to talk openly on these forums as I know you all understand the mix of emotions involved in BC.
The plan is to stay with my current surgeon as her reputation is excellent but to pester them until I get on their nerves!! I’m naturally a positive kind of person so just need to give myself a talking to every now & then.
Wishing you well ladies & thank you for taking the time to share your experiences, it’s very much appreciated xxx
Update - I’m currently in hospital after having my surgery on Monday!!
I ended up changing to a different consultant and after lots of chasing got a cancellation. I got the call on the Thursday before.
Healing well and everyone seems very happy with the results, including me ?
It’s the final stage and although I know it will be hard I’m so glad I’ve had it done,
??
Hi Pam
I see that you have got to the point where you are considering reconstruction. As you rightly say there are so many options and ideally you would need to speak to your surgeon to see what options are available to you. Some of the breast cancer surgeons may only be able to perform implant or ld flap reconstruction whereas the plastic surgeons can perform all different types of flap reconstruction.
My personal experience is my plastic surgeon didn’t like using implants where his patients have had radiotherapy as he was finding he was getting so many referrals from patients that their implants had capsulated and were having to have implants removed. I had a Tug reconstruction using my inner thigh and am absolutely delighted with the results. Yes it was was tough for 6 weeks and the leg site got infected and took longer to heal but the breast itself is absolutely amazing and I’ve just had my nipple reconstructed and tattooed. Please feel free to PM me if you want to know anything and if you let me have your email I can send you pictures of the results of my reconstruction. Good luck . X