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
Hi Bella if you let us kmow which area of the country you all we can find the best place for you to meet.
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.
Sorry to hear you're having problems finding bras to fit properly. I've put for you below the link to BCC's publiction regarding this and hope you find it helpful.
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.
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
You are absolutely right Naz and I can confirm what you are saying with my own experience. I was shown lots of photographs showing how the surgery LOOKED but this was never back up with how the surgery would FEEL afterwards ( I was simply told there would be some weakness on the surgery side).Obviously, the two go hand in hand (surely it's not rocket science) and to get one person's opinion on how the surgery feels is simply not sufficient. We need a range of info and opinions before choosing. CONCRETE, HONEST and ACCURATE information. I really strongly feel that the whole process is not good enough. xxx
Thanks Bella60, you have made some really valuable contributions to this thread 🙂 Therefore, I am putting it out there. If there is anyone reading this from BCC, please could you advise us on the way forward? I am not on a one woman mission to save the world but lots of us have to live like this now for the rest of our lives and will never have the opportunity of ever quite reaching that feeling of optimum well-being that we all should feel in order to lead happy, healthy lives. Breast reconstruction is moving on too quickly and too fast. The results for many are not all that so now is the time to say STOP and REVIEW!! 🙂
Hi soosie soo I totally agree with your comments, there is not enough support for post reconstruction patients. May be with a bit of lateral thinking the NHS save money and end a lot of hidden suffering. Ps if i strain my upper back my boob hurts(Operation side) and some times my other boob hurts as well. Its never ending.!!!
Seriously could not Breast Cancer Care do a survey and investigate how big the problem is, so medical opinion could be changed. Any body have any thoughts on the matter? regards to my fellow sisters in sufference
Really interesting comments once again ladies and FizzB, no nipple for me either. I am not interested! At the end of the day, I truly believe that getting rid of the cancer should be the only priority and that women would be better served and resources would be better spent by offering meaningful and constructive aftercare that helps and empowers us to accept these changes in our bodies and helps us to establish that we can still be women and go on to live enriched and meaningful lives. Nobody ever made me feel that it was possible to live with only one breast. No health professional that I ever came into contact with ever said 'you can do this.' I was on a human conveyor belt. Well, It's all too fancy and advanced for my liking and I do feel well placed, as the recipient of breast reconstruction, to make this statement. I think it all needs stripping back, simplifying and reviewing. I believe that WOMEN AFFECTED BY BREAST CANCER ARE NOT GETTING THE BEST CARE AND ADVICE. Some of us are being set up for a hell of a fall. For example, what is a woman going to do if she is told that immediate reconstruction is best because the cosmetic results are so much better than delayed reconstruction? She is going to have immeidate reconstruction. To my mind, it all stinks and, as mentioned, I feel that somebody, somewhere needs to carry out a full medical review to determine whether or not us ladies really are getting the best cancer/reconstruction diagnosis/treatment and aftercare. I think the results would make very interesting reading. 🙂
I agree, this is an interesting thread and I have to say, that despite my original comments, now that the warmer days are upon us, I am once again struggling a bit with the feel of this LD reconstruction (and I am 3.5 years down the line with it now). I guess because I am wearing 'less' so to speak (vest tops/t shirts) it can feel the implant more (not sure why or how!). I also keep going to touch it more (not a good idea as it is numb anyway). Sometimes I do wish that I had the courage to say to the PS, 'okay enough is enough, take the implant out' because at the end of the day, it is a 'foreign body' in there, but as Soosie has already pointed out, some parts of this procedure are irreversible.
Under clothes it looks great and I can swim freely. However, once the bra is off, the scarring is there and it is clear that the mound is not anywhere near a replacement breast, how could it be?
Life goes on, but I am certain that I will question my decision to even entertain the idea of reconstruction for many years to come.
I too have been reading this thread with interest. I am now 3 years on after mastectomy and was never offered immediate reconstruction. However at my last check up the Dr asked if I wanted to think about it and I had another appointment earlier this month to discuss what reconstructions are possible? I was shown before and after photos of DIEP/LD and implants and have spoken to someone who's gone through LD reconstruction and is very happy with hers. However, I just cannot get over the thought of having more scarring and possible muscle weakness and I think on balance that I will stay unilateral so to speak!!
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!
Aww I am so terribly sorry to hear that you are struggling. Please keep in touch and tell me how you are doing. I will message again very soon to see if you are on the up (you will be). I am sending you some female strongness!!! Lol xxx
Hi there Yil
Thanks for your reply. I was very interested to read it. Was it the implant reconstruction that you rejected? If so, I can understand your Consultant saying your skin now needs to be rested. How are you feeling then in terms of the other options available? I simply cannot recommend the LD flap operation Yil and I would urge women to reject this operation. Yes, it looks great and that's why I think Surgeons are proud of it. However, there is no getting away from the fact that it feels horrible so it does not make sense at all to have it. Additionally, when it's done, it's irreversible. That tissue cannot be put back. Had I received the right help, support and empowerment, I believe I would have been better off with just a straight forward mastectomy. At the end of the day, it is most important to get rid of the cancer and not cloud the situation with the stress of reconstruction. At the risk of being controversial, a breast is simply a lump of fat, we don't need it, it's not a major organ and we should be made to feel that we CAN live without it and not that we CAN'T. I feel that the best route forward is the LEAST INVASIVE to our health and well-being. It's like if you go to the Dentist. Why have your teeth capped or crowned if you can just have fillings. Also, you can offer someone all the loveliest, tastiest, most exotic ice cream flavours in the world but sometimes plain, old vanilla is the best. You can offer someone a pair of the prettiest, height of fashion Jimmy Choo's but you know what? Sometimes, the best option is a simple pair of Clarke's. I hope you understand my analogies Yil and wish you the best of luck in your future decisions. Keep in touch and keep smiling! xxx
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,
Hello Ladies. I was diagnosed with Breast Cancer in June 2014. I waited six months to have my reconstruction. I wouldn't have been in the right frame of mind to have one straight away. I was not prepared for the emotional turmoil my head would be in after finding out I had BC. I didn't feel I had the right support to get me through this and although people are available on the end of the phone I felt like I would be a failure if I picked up the phone so plodded on! I had my reconstruction in Dec. Although like others I am still in pain most days it far out ways how I feel about myself and my confidence. I have just returned from two weeks holiday abroad and I don't think I could have that without it. We have all been so brave and we should be proud of how far we have come. Happy to talk through some more to anyone who wants too, just didn't want to go on for too long!
Aww thanks Bella60, I am truly glad I made contact with someone who feels exactly as I do. It is such a lonely road. You have empowered me and I feel that the powers that be may not like what I have to say but I will say it with dignity and integrity. I am not out to villify those who I believe contributed to my poor condition today. However, I would not want any other woman to go through what I have been through. It has all been so unnecessary and costly. I wish you lots of good health, happiness and hope for the future. Keep in touch, Soosie Soo xxx 🙂
Hi susie Soo thanks for your reply, maybe there should be a campaign NOT for immediate reconstruction, Breast Care Nurse/ Plastic Surgeonss of Britain are you by any chance listening to our experiences??? Stay stronge and positive Susie Soo, believe it will get better, we have the strength within us to make it happen. Bella 60
Bella60, thanks so much for your reply. I read every word and it was as if I had written it myself because all your thoughts and feelings are exactly the same as mine. I too experienced the most intense and profound shock when diagnosed because they had assured me eighteen months before that I simply had breast eczema and there was nothing to worry about! When I received the correct diagnosis, I truly honestly believe that I would have had a nervous breakdown if it were not for the foresight of my mum to get me some help in the form of Reiki. The hospital did very little to help me through and, when I look back, the lack of empathy and compassion is quite simpy astounding!! They wanted to discuss reconstruction a few days later!! Anyway, hindsight is a wonderful thing but I truly believe that with better care, more compassion and better information they could do a much better job of empowering women to make the right choices. If somebody could have just held my hand, told me everything would be okay and that it was definitely possible to still live an active and full life with only one breast, I would have snapped their hand off and saved me the time and trouble of a 6.5 hour operation that was very expensive to the tax payer and quite frankly in my case has been a waste of time. It might look okay but every day of my life it feels horrible and has left me with the dreaded, stiffness and tightness that I now know affects an awful lot of other women and not just me. I have already sent a letter to PALS to advise them that, although I did receive some good care in part, on the whole, I believe that I have not received the care and attention that I deserved in terms of diagnosis, treatment and aftercare. At the end of the day, it may get me nowhere but I firmly believe that integrity has to prevail and if us women do not tell these super duper Surgeons and Consultants that in actual fact we are being left in a mess then nothing is going to change. I say, forget offering us fancy alternatives because they don't work. Less is more! Instead, support us, offer us compassion and empower us!! I wish you the very best of luck with your onward recovery Bella60 and would urge you to tell those involved in your care how you feel about the situation. At the end of the day, you have got the rest of your life to live and so have I. Ta ra for now, I am sending some positivity your way. xxx
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!!!!)
Fizz B, thanks for your reply, I really appreciate it. Your story sounds frighteningly similar to mine if albeit you have had a double LD reconstruction. I too was told that it would only impact a professional rock climber but this is simply not the case. My Oncoplastic Surgeon was thrilled too but, in the interests of honesty and integrity, I have had to explain that I don't really see it as a success story. With one hand , they have got rid of the cancer but with the other hand made me worse. The emphasis has got to be on how it feels, how it looks and also the real long term implications and I really do feel that some of us are not getting the right support and info at this critical time. Anyway, it is lovely to hear that you are running again. I too swim a lot and am pleased to say that I am back to near normal with this and I think you may well be too in time. However, two years down the line, it seems that nothing can take away that nagging tightness, stiffness and discomfort. I don't know how you feel but I tend to look at things in percentage terms. I know I will never be back to 100% but I would love to get back to 95%. At the moment, I am probably on 80/85%. Anyway, I wish you the very best with your onward recovery and thank you once again for your thoughts and feedback!! Soosie Soo. xxx
Mel 66, your reply has helped me tremendously. More than you could possibly know, thank you.You see, there is nobody else to talk to and nobody else to compare notes with. I really wanted to hear from ladies who had experienced good and bad and it seems that you have experienced both! For me, now that it has been two years, it is important to try and reach the natural sense of well-being that has eluded me so far since surgery. I have been stuck on about 80% for too long and I don't see why I cannot achieve 95%. I simply have to get this body working again. Pre-surgery, I enjoyed the benefits of walking and swimming but I have just joined a gym for the first time in my life because I realise that I must now start to work the muscle groups as well as do cardiovascular exercise. I am not saying for one minute that it is cheap as it is state of the art and has a pool. However, it is a price I am willing to pay in order to regain my strength and former good health. I totally empathise Mel 66 when you say you cannot get off the settee! I don't know if you go to a gym but perhaps that could be the way forward for you too! I am extremely busy with working and looking after two children but I am determined to make time for this. I am only into the second week but I am enjoying it. Particularly as I don't even have to get in the car as it is within walking distance. Anyway, thank you once again and I would most certainly value any further feedback from any other ladies. I am not sure if there are many ladies who use this site once recovery has been well under way for some time. xxx Oh, by the way Mel 66, I am not interested in having a nipple either! No way after that horrible operation! xxx
Thank you so much for your reply Naz. It is good to hear your thoughts and comforting to know that I am not alone with these feelings. However, I believe that a reconstruction should look reasonably good and feel okay or else what is the point in going through it all? At the end of the day, hindsight is a wonderful thing but I truly believe now that you cannot rob one part of the body to make another bit better. I could not possibly have known this beforehand. I wish I had accepted the hand of God and just taken it on the chin and I wish I had been better informed by Doctors and Breast Nurses. I also think that these Doctors and Oncoplastic Surgeons that are carrying out these operations really need to stop and think about whether what they are doing is best for women or whether it is what is best for their careers and professional portfolios. I was asked by my Oncloplastic Surgeon to have a photgraph taken of my surgery. I am so glad that I didn't because I am not happy with how it feels or looks and would certainly not want to be put up as an example of success!! It's all too sophisticated these days and sometimes I think less is more. I also think that because a lot Surgeons these days are Oncoplastic Surgeons they are offering to do it all together and it is not necessarily the right course of action. They need to start putting more support in place to really help women make the right long term choices. I personally believe that with the right support I could have accepted the situation and lived with it and I would have been a much healthier specimen than I am now. I have a breast, I am symetrical but I have paid a price and I am not at all comfortable in the back area and at this stage I am wondering if I will ever be able to find a feeling of optimum well-being again. I hope you understand my thoughts and reasoning. Thanks again Naz. xxx
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