Hi everyone, has anyone got any advice for me? I was diagnosed with high grade DCIS on 13/12 and am due to have mx at the end of Jan (I haven’t been given a date yet). I am seeing a plastic surgeon next week with a view to reconstruction from my stomach. I can’t have WLE or rads as this is my second primary and I had those last time (12yrs ago, aged 38) so my only option is mx. I won’t know about chemo until they have done the mx and tested it all to see if any of it is invasive. I really hate the thought of waking up from the op with only one breast and a scar but also hate the thought of the long op and more risks if I go for the reconstruction and how horrible I will feel afterwards. Help - what should I do? Also this waiting around doing nothing about it is driving me mad. I would be grateful for any advice.
Hi Lemoncake,
I think there are pros and cons for both. I wanted to have a reconstruction at the same time as mastectomy late Nov but was not allowed as not certain if cancer was too near the edges and I might have needed radiotherapy. My MX scar has now nearly healed and it looks OK, but I already know I want a reconstruction once allowed in about 1 year.
I just feel the lack of left breast is a constant reminder, and although a frivolous reason, I find i have to wear camisoles with a lot of my clothes.
I think that if you think you will ever want a reconstruction probably best to get it all over in one go rather than have x2 major ops, but that is just my opinion.
Good luck making the decision, hopefully someone else who has been there can also help you.
xx
Hi Lemoncake,
I was not given any choice when I had my mastectomy.
Last year I investigated the possibility of reconstruction and because of the lenghty operation, plus all the small one after to tidy, then one for contructing the nipple, I chickened out.
However one of my colleague who like you was offered to do it at the same time, is really happy about her decision. As she was already going to have an anaestetic, she might as well get it done at the same time.
What I personnaly found when doing my research is that everyone and I mean everyone told me to only go through it if I was 100% sure that what I wanted. For many reasons I was not ready and don’t regret it one bit. I have just learned to live with my mutilated body.
I am sure many ladies here will be able to share their experience.
Good luck
Hi Lemoncake, so sorry you have to face all this, especially after so long of being NED.
I had an LD reconstruction concurrent with a skin sparing mastectomy nearly a year ago. When I saw the PS she said there were ‘theroetically’ two options of LD flap (back muscle) or DIEP (tummy tuck), however after she examined me she said I was too slim for the latter. For me, it was good to get all the surgery over in one go - I had neoadjuvant chemo and had rads after surgery. It was fairly big surgery (not quite as big as DIEP) but I came through it really well and have a lovely recon. I wasn’t offered implants - how glad am I about that with the current scares!
The good thing, for me, was that my BCN stressed it was my choice, and that I should ask all the questions I wanted and not be rushed (too much anyway) into deciding. I was ‘lucky’ in that I had a couple of months between seeing the pS and my surgery, as I saw her part way through chemo.
There are lots of ladies on here who’ve had DIEP flaps and are really pleased - hopefully someone will be along soon.
Take care and I hope it all goes really well for you.
Hi Lemoncake. I too was given no choice when I had my mx in January 2010. I knew from the start I wanted reconstruction and hated having only one boob. If you do not go for immediate recon and you are nhs be aware that some waiting lists are very long as you are then not considered urgent. I had to wait seven months but I know others who have been told 18 months. You will also get a better end result from an immediate recon than a delayed one due to how they make the incisions. I had a diep recon and have made a great recovery and love my new boob. I was back driving after three and a half weeks and joining in my pilates class after six weeks. I live on my own and managed fine at home as soon as I left hospital after one week.
Good luck.
Pam.
Hi Lemoncake
I had immediate reconstruction (from my stomach) when I had my MX New Years Eve 2005. Personally as I was young (37) and recently single I think the immediate reconstruction which meant I never woke up to having nothing helped me cope better mentally. The operation is long and the recovery time is slow but I must say the tummy tuck result was a nice extra at a time I was feeling nervous about my appearance. The op to create a nipple was minor (I was even knocked out) and when the tattoo was done I felt very ‘whole again’ . It was great knowing that I could appear in a bikini with all scars covered and no one knew what I’d been through! Even with the bikini off the reconstruction looked pretty good and I still bagged myself a nice man who became my husband in 2009.
Obviously there’s no getting away from it being a massive op and the reconstruction will feel a little heavier than your normal breast I did get some feeling back in the skin afterwards. I was pleased with the shape and my surgeon managed to match it against the other one well size wise. It will be a bit swollen at first but that settles down in time. I do remember a moment of humiliation sitting topless in the operating theatre holding a colour chart up against my remaining nipple whilst she worked out what colour to use for the tattoo for the best match…just as well I have a sense of humour!
Given the option I’d always go for immediate recon despite the fact that I’ve now had a recurrence and will lose my reconstruction and can’t have a new one for a while so I’m now looking at waking up to nothing but I reckon I’ll cope better now as I’m much stronger after my experiences.
Hope this helps a bit. Shout if you have any questions
Twinky x x
Thanks for all your comments ladies. Twinky - how sad that you will now lose your reconstruction after going through all that. When is your op? Thats another thing that bothers me with having a reconstruction is how do they know if there has been a recurrence, how was yours found? How common is a recurrence after a mastectomy because you wouldn’t think it possible to get one. Does a reconstruction stop it being found so easily, what checks do they do? Bet you wish you hadn’t said ‘shout if you have any questions’ don’t you?!
Lemoncake
x
Lemoncake you aren’t doing nothing, you are busy doing your information gathering - friday afternoon not being the kindest time to start. No-one can make an important decision without enough information!
When you go to see the Plastic surgeon at that appointment next week, by then you need to understand the issues about the different surgical options and about your feelings about your body and about surgery, and you need to know what questions to ask the surgeon, you don’t need to go into that meeting already having made your decision.
You can also call the helpline here and your own breast care nurses to ask them for advice too. It is quite possible to live with external falsies, and also quite possible to go flat as a temporary measure and just get the cancer out first, and then deal with the recon questions later if you’re not ready. At least you already know you don’t need to delay for rads, and if you do end up needing chemo that shouldn’t affect your surgical choice, although it will make you feel even more miserable if the surgical recovery is hard.
Wishing you luck whatever you decide.
Hi Lemoncake
As well as the support you are receiving from the other users you may find it helpful to read the BCC booklet on reconstruction. It gives information on the options available and suitability. If you would like to order a copy or read this on line just follow this link:-
www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-reconstruction-bcc7
I hope you find this helpful.
Best wishes Sam, BCC Facilitator
I was offered immediate reconstruction, even though the surgeon wasn’t sure if I needed rads or not. Even with immediate recon it’s a multi procedure commitment, but my BCN said to me that most women find the mental adjustment after an immediate recon easier. Physically, after LD recon in hospital for a week, we moved house five days after, driving after three weeks. I did have a stubborn seroma on my back but can honestly say I was never in any unmanageable pain. Good Luck, it’s very difficult to make these decisions, for sure. X
i dont want to alarm you lemoncake but i had immediate recon last march with silicone implant, but sept just gone i had local reccurance which were four nodules appeared on my recon i had them removed succesfullY and my oncolgist said it was just some cells left from oringinal dx i did not need any further treatment. but noe another two lumps have appeared waiting to see my surgeon next week, i am hoping its nothing sinister but its got to be checked, i wish i waited for the recon now, i hope this helps but everyone is different i had ibc. good luck x x
oh sorry forgot to mention i at to have my silicone removed last time because the radiotherapy made it go hard and because of the nodules.
Thanks for all of the posts ladies. I saw PS yesterday and have decided to go for the free tram flap which the consultant suggested, still haven’t got a date yet though and was dx 7/12 confirmed with biopsy results on 13/12. Very frustrating. Have you all had such a long wait?
Lemoncake
x
Hi Lemoncake, I had to wait four months for surgery because my lump was large and surgeon put me on tamoxifen first to try make it smaller and safer, my friend get chemo first for same reasons. Yes, I was clinbing the curtains with frustration (especially as me and tamoxifen don’t get on) but it did give me time to think about the options. I knew straightaway I didnt want multiple surgeries or recon, I just wanted it off with minimal interference, but it took the surgeon four months to believe me! Once they quit the shilly shallying and agreed to get on with surgeoning, I got my slot within a fortnight.
It must have been growing for years, so a week or two won’t make a lot of difference, but rushing into a bad choice you could regret. Hope you feel happier now your mind is made up. Waiting is the worst, good luck!