Hi there
I have not been on this website for a good few years due to the busyness of work, life and being a busy, working mother but I really am hoping for some advice. I was diagnosed with simple breast excema in 2011 which consequently was diagnosed as Paget’s Disease with underlying high grade DCIS in 2013. The shock of going from expecting a negative diagnosis but being given a positive one and then thinking that I still had breast excema and being told I had cancer was the most profound and unreal thing I have ever endured. That really messes with your head. I was simply not equipped or set up for it at all. Nobody ever held my hand, told me it was going to be okay and that yes, it is actually possible for a young woman such as I to live a full life, carry on as normal, swimming etc with one breast. It was simply inconcievable for me to think that I could even function like this. Therefore, I opted for reconstruction. When someone tells you that they can get rid of the cancer and fix you all in one go that is a very attractive proposition. I was fully informed that weakness on the surgery sight would occur but, two years down the line, I still have the most horrendous stiffness, tightness and discomfort. I feel like ripping it off some days! I would therefore be interested to hear from any other ladies who have had the same surgery, whether they are in a good or bad place with it, whether they were made fully aware of the after effects of surgery and if you do finally accept that this is a piece of your body and not a foreign object that is merely planted on your chest! I do feel better already actually having just got this frustration off my chest so to speak!! Yours living in hope, SS xxx
Hi Soosie
I had this type of reconstruction back in 2011/ 2012 and also experienced quite a bit of stiffness and tightness with it. To be honest, there have been many times since it was done, that I have also felt like ripping the thing off my chest! It is only this year really that I have come to accept that I either live with a reconstruction or I get rid of it and live one breasted. To be honest, I don’t have the courage to do this, so I live with it and work hard at trying to accept it better. This can be hard when you can’t even feel the thing! Anyway, you are not alone ;in my view, recons can take years to come to terms with, but I think now, finally in 2015, I am in a better place with it all . There is hope! Naz x
Hi I had my Ld reconstruction done in Sept 2014. When I was given the diagnosis i was so stunned i could nt seem to absorb any kind of information. So the fact that I didnt absorb the information at all, and nobody seemed to understand that I was incapable of logical thought, makes me regret deciding to have a reconstruction. I do not think there was or is enough support. I think that PS just want to make a boob, once that is made they don’t really care what you think or feel. Although my lump is a good shape, its nothing like my boob and I do not like it. I too have a lot of pulling and tightness,also I am not as stronge as I was… Saying that you will not notice a differance un less you are a rock climber is total rubbish. Although I do not wish this on any one, it is consoling to hear fom other women in the same boat, but Today I feel dispirited and also angry that i allowed myself to be sucked into the medical opinion that immediate reconstruction is best. For whom I may ask? Certainly not for the women having the op.I soo wish I hadnt had it, so that i was as strong and fit as i was before. Rant over, I have got it off my chest(pity I cannot get my damned reconstruction off as easily!!!)
Hi ladies, My problem is I was happy with my reconstruction but unfortunately my body is rejecting it as this happens to 1% of people and it had to be me…
So my surgeon had offered me the choice of DIEP reconstruction or LD. in the future as my skin nowneeds to be rested.
I think I have made up my mind after all the reviews I have read with great interest.
Thanking you all very kindly,
Yil
I’ve been reading this thread with interest because I chose not to have an immediate reconstruction. I, too, felt that reconstruction was considered the norm and that the detailed pros and cons of each option were not clearly explained. While all my questions were answered, I do feel that anything I didn’t specifically ask wasn’t mentioned.
What decided me was being told that any reconstruction would have to include an implant. I felt strongly that I didn’t want an implant, therefore the choice had to be not to reconstruct.
And I was in no state of mind to make such an important decision at the time. I did waver a bit, but I’m now (7 weeks on from the operation) really glad I opted against reconstruction. I’ve been surprised how quickly I’m accepting the loss of my boob and how I look.
I know it’s early days yet, and I’m sure there will be times when I’ll be cursing having to wear a prosthesis but at least I’ll be able to take it off at the end of the day!
Hi all
I am sorry to read of the problems you have encountered, I will certainly pass on your request to our campaigns team Bella to see if anything is being done on this area to improve standards
Best wishes
Lucy BCC
You are very welcome Soosie_Soo
Take care
Lucy
So it isn’t just me… OMG and I was beginning to get neurotic about the constant soreness and discomfort, after 2 years down the road after my LD Flap and immediate construction… having had my implant replaced (as this was assumed to be the problem / culprit) I still have the same soreness and discomfort, and now as further skin was removed (as the new implant was smaller) I end up with a skin flap at the base of my new boob !! not a pretty sight, and certainly not something I was expecting… the shape initially was fine… but the biggest challenge I have is BRA’s… can anyone give me any suggestions, I have tried every make under the sun, and to date the onlt comfort is from a Belvia stretchy bra - not very attractive, I just find the pressure on my back unbearable, so not able to wear vest tops / strppy tops in the good weather :(… I have finally got a pain management appointment, whether this will help or not, but I totally know where you guys are coming from, this is major surgery and should not be taken lightly… and I did laugh as I too was told that unless I was a rock climber, I would have no problem with anything - Wrong… I have started at the gym but taking it easy where weights are concerned, as the burn following lasts for a few days… so I am so pleased to have logged on here tonight, and thankyou for your thread… it has made me at least feel sain again, and realise that the problems appear to be part and parcel of the surgery - that we weren’t told about… Love to you all xx
Hi everyone I have not been on this site for some time but actually got on to see if anyone was part of the tact 2 trial I was part of in 2008 and happened to notice this thread about LD reconstruction.
I understand fully what everyone is saying and I can agree that you can always feel your reconstruction but what I can also say is that as time goes by you notice it less and less. I can remember in the first couple of years being very tight and uncomfortable at times but now I barely notice it, except when I cough and my reconstructed chest jumps up and down! I just feel lucky that my cancer was removed and 7 years on I am enjoying my life.
Hi Gang ive justhad a possible good idea, why do nt we all meet up ? We could meet if possible at a Bcc centre.I know we would only have the LD in common, but that would be the point. It might not help, but then again it might. I am prepared to arrange it and with the heilp of bcc( To BCC I would obviously need to liason with you) It could be fun, I m sure as hell we could all do with some of that !!! Any way Im sure you will let me know . Salutations sisters.
Hi. I agree with the good and bad comments on this post. If I had been offered a reconstruction at the time of my mastectomy I would have snapped their hand off. Thinking it would make everything better - I just wanted to be “normal” I didn’t want to look any different. I remember sending a text to my friend saying I am not walking out that hospital without a boob! In the end I didn’t have a choice.
In reality you don’t have time to think straight from diagnosis to operation I know my head was all over the place and I wouldn’t have been in the right frame of mind to make decisions. Perhaps consultants think by offering you a reconstruction straight away it helps you get through what is happening not realising the emotional rollercoaster is sometimes unbearable.
Do others still get emotional when they think about what they have been through?
I have my 1 year check up this afternoon, keeping my fingers crossed that everything is ok.
Will keep an eye on this post to see where you are meeting up…xx
Great thread! I didn’t have LD recon - just an implant - but I couldn’t agree more with you about the lack of information and advice about reconstruction, and all the assumptions made about what we *should* want. I thought I was going mad as well! I was delighted to leave hospital with some semblance of a breast, and I think my cosmetic outcome will be pretty good in the end (it’s still a work in progress) - and, yes wow, look at what these surgeons can do technically, and it’s all available on the NHS!! But I was told NOTHING about the alternatives, or the long-term stiffness and weakness. It was just assumed that, as a woman, I’d want recon even with all the (unspoken) downsides to it.
I had my mastectomy and implant recon in June last year. Both my surgeon and BCN said they couldn’t understand any woman offered immediate reconstruction turning it down. To be honest I didn’t think I had any choice, and felt really bumped into it. I was given no information at all about living breast free, or even going down the delayed route so I would have some time to weigh things up - my head was all over the place at the time. The cynic in me thinks these surgeons need to build portfolios and meet targets - red flags were flying when my BCN couldn’t show me a single photo of a recon my surgeon had done, but I was so keen to get rid of the cancer, and avoid any aggro, that I just went with it. The result was a predictable hot mess. Naz - I’ve read your posts and I’ve got to say I identify so much with the distress of living with a botched recon. It’s so hard to look at yourself in the mirror and see the results of someone’s careless work staring back at you, isn’t it? It’s not the same as a decorator making a mess of a paint job in your living room is it?! It’s your body!!
Since then happily I’ve been referred to a lovely, skilled plastic surgeon, who’s doing a great job of putting things right. Still there though I suspect I will be given what *he* thinks is most suitable for my body.
There are so many assumptions here about women are *supposed* to look like. We’re *supposed* to have two breasts - maybe even to make other people feel comfortable. I think too it can minimise the seriousness of what we’ve gone through. We’ve had a precious part of our bodies amputated - we can’t cover that fact up with a plastic, numb mound. And no it’s not a free “boob job” (and, yes, I’ve had that).
Soosie Soo - thanks so much for bringing this up. We really do need better advice and information - even just in the form of better written materials - so not just explaining the different forms of recon, but explaining more about the alternatives, and the emotional impact. Would love to help out with that if it was any use (am a journalist).
Wow - please excuse the huge rant! Feels good though to share with you lovely ladies.
Janet x
This thread was very interesting reading as I thought it was just me being ungrateful! I had a single mx nearly 18 months ago and because of rads didn’t have a reconstruction until 9 weeks ago. I had an ld flap with implant and came out of hospital after 3 days. Saw Surgeon at 6 weeks and she was pleased with result. I admit that when I first woke up from the op I was so pleased to see a “breast” where there was nothing previously that I didn’t really take all the drawbacks in. I have horses and had 2 mares due to foal about the time of my op so I was concerned about recovery time but I had to fit in with when surgeon could do the op. I have done very well in recovering but now do wonder if it was worth it. I am sore every time I do anything physical with my right arm, my back is numb and sore a lot of the time and it has been a nightmare not being able to do anything physical for 6/7 weeks. I keep looking at the recon and it just doesn’t look like the other breast in any way even though she has done a good job. I think I was expecting something very different even though I went to the usual reconstruction evenings etc. I just feel very deflated and fed up when I was expecting to feel totally different.
Hi there I went for my 1st post surgery mammogram today. I feel so depressed its that deva vu feeling and a reminder how awful the whole thing was /is. I should get the results in 3 weeks or earlier… Any way I was thinking of making some enquiries for hiring a room in a hotel in Manchester ( that sounds a bit formal.) Maybe just choose a hotel and a date and see what happens. What does anyone think of that. I thought a day in September would be good. Bella
How amazingly honest of all of you all to admit you’re not happy with your reconstructions. It’s almost as though you’re not allowed to grumble, just be grateful you’re alive and have a breast mound. Grumbling might construe you’re not happy with your lot.
I had a single mx Sept 2013 and was immediately told I wouldn’t be having immediate recon due to needing radiotherapy. OK. Fait accompli. I knew no better. You can always have recon later, they tell you. When it came to those consultations, no one could offer me a technique that would allow me to carry on with all my sport. They only offer LD in my area. Nothing else. I was offered to be referred about 2 hours away if I wanted further options but I declined. I felt cheated that they probably knew I would never have a viable recon option but felt they kept that quiet and then when I realised, I felt the rug had been pulled out from under me. I’m not convinced I would’ve had recon as I wanted no impact on my sporting activities whatsoever. They kept saying it would be fine but I wasn’t convinced. I’m glad I didn’t. It’s been hard coming to terms with uniboob but it was right for me. I was made to feel ‘odd’ by the breast cancer team that I didn’t want recon.
There is no correct answer for everyone but your stories have reassured me that I didn’t want to sacrifice my sports and I suspect I would’ve had to if I’d had recon.
Good luck, ladies.
Morning ladies i am looking at a couple of hotels, in Manchester. One is very central, the other whichi is about a mile away but looks cosier so too speak. Iam going to see if they have a quieter room where we could meet… Iam thinking after noon tea for refreshment,( no doubt there would be something stronger if thats what you fancied vodka:would be my choice ,For a date I thought last week in September either week day or week end, I will suss out prices. Obviously the more the merrier. cheers Bella
. Note to Pooppy.
I am nearly one year post op and today my back has decide to stiffen up, and become uncomfortable, I took pain killers last night to make sure I slept properly, but apart from some blips my back is better, but not better.I remember running out of energy, the consultant gave me a different reason for the fatigue, every time I saw her. In other words she did not know why. Its obvious really the body is under such physical and mental stress, , so the batteries go flat
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Thank you all for your feedback re bras. I would like to make something to make us feel special, but not so expensive it couldn’t be worn every day, not cheap cheap though. If I made it in England it would have to cost £30-£40 - do you think that would be too much? I would really like to do something which would make post op ladies feel good. I am down in Sussex so will not be able to make it up to Manchester. One of the stupid obstaclesI have to saying anything about reconstruction when I have my check ups is I really like my surgeon and don’t want to hurt his feelings!!! Xx
Is It Me? Where is the best help out there? I called our local BCC and asked for emotional help…I got one phone call which told me what I was experiencing was normal and perhaps go to support group which I have no energy for. It has been six months since my recon and I have now hit a brick wall of exhaustion…my body doesn’t want to work anymore. I have tried to get a doc appointment but have to wait a week, I have called every day to see if there is a cancellation and was told a nurse could call me. Well, she called me and although I told her I had felt like this a couple of weeks, she told me to rest for a couple of days and hopefully by the time I see the doc next week I will be feeling better! Not sure what the doctor can do and I think I know the reason,but its not a nice feeling. It is a very lonely road. If you get emotional people think you need counselling and if you keep smiling its all forgotten because you are fine! Sorry for the rant but it is very frustrating.
Thanks to everyone who has shared their experiences on this topic. I’m so pleased that I logged in today after re-setting my password and saw this thread for the first time.
I had a left mastectomy and immediate LD flap reconstruction in March this year after being diagnosed with high grade DCIS last year and although recovering reasonably well, I have been feeling very low this last week or two due to the weakness, fatigue and discomfort, sometimes pain, that has been persisting and I feel I’m worse than I was a few weeks ago. I thought it was just me as I had been expecting to feel stronger by now.
I made the decision to have immediate reconstruction myself - the oncologist and plastic surgeon had assumed that I would want to wait. However, after taking a long time to think things over, I decided this was the option for me as I wanted reconstruction but did not want an implant. I could not have a Diep reconstruction due to previous abdominal surgery and felt somehow it was now or never. I’m not sure now whether I would make the same decision but possibly I would have. I feel that I did a lot of reading about the operation but did not understand how long recovery would take. I know now that it could be quite a while and even 6 months on is early days yet and I shouldn’t be beating myself up about not feeling better physically than I am. I think my expectations were much too high.
I do feel much better now, knowing that I’m not alone - I feel somehow that because I’m now cancer-free, it’s being ‘ungrateful’ to moan about how your back hurts, or that you can’t do much etc. I do know how lucky it was that the cancer was caught early.
I can see that it might be a very long road but knowing that I’m not the only one has given me a lift, even though I’m sorry for everyone going through it. We must try to be kind to ourselves.
My plastic surgeon has offered a reduction of my remaining breast to match the reconstruction (it’s smaller as I didn’t have an implant) and also a new nipple. The way I feel at the moment though, I never want to have surgery again.
Thank you so much, ladies and all the best to everyone!
Good morning ladies! Just wanted to say that “me time” has taken a whole new meaning after cancer for me… I have spared some time for a long walk in the evening and it does help… As for the nipples, it makes a huge difference to one’s self-image to have them reconstructed, and “coloured in”. I found that the nipple surgery wasn’t too bad, perhaps because I had everything done in a relatively short time, so I look back at 2013 and 2014 as if it was someone else’s life which I witnessed through their life… Not sure it makes sense. What I really find difficult is matching my identities before and after. And in that respect, no one - nurses, consultants, counselors- have even gone near meeting my needs. It is a work I am doing on myself also trying meditation (mindfulness)… A friend suggested a book, called “Feeding your demons” by a lady called *something* second name Allione, it seems silly when you read it but actually works… Have a great day everyone. We can make a choice to accept who we have become (with, in my circumstances, many extra layers of chub due to medically induced menopause 
) which I hope will not sound patronizing to say.