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LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

afonlas
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

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!  

 

danielafederic
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

It is hard. Every evening I feel exahusted, and I had my LD flap(s) done 2 years ago! The fact that they moved those muscles to me has meant shoulder and back pain, intense at times. I used to be a great front crawl swimmer, I am now slow and heavy like a rock, in the water... and besides every time I do some physical activity involving the back/shoulders, my "breasts" go hard like rocks! Even yoga is painful (!). I have been referred to a consultant for one of my implant seems to have gone really hard, but the appointment is months away, and besides, what can he do? Leave me with an empty sack?  I would probably choose a different procedure in hindsight. I was in shock when I decided for a double mastectomy which was not "necessary" but elective... and perhaps I could have waited, or saved the skin at least in the breast which was not affected by the cancer. I was a private patient (thanks to husband's good insurance), and I now wonder if the surgeon offered me what was really for his advantage (£8400 a breast...)?

I feel like saying to those making the decisions now: LD flap is painful, apart from where you have no sensation (breasts, back where the muscle was moved, back of your arm)... the breasts do look good enough, but perhaps there are other ways?

 

Naz44
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Poppy, I totally get where you are coming from. This journey can be VERY lonely and isolating indeed.

 

What kind of support do you feel you would benefit from? For me when i hit that brick wall, it was chatting to the counsellor attached to my then place of work that helped.  Every day I would dump a load of 'stuff' onto her, I felt so guilty at the time, but the truth is that I knew that no one around me would understand those feelings of exhaustion, despair and sadness which I was experiencing, No one was able to empathise with what it was like to face those scars each day and even now, 3 years on, they just don't and it is never spoken about anyway.

 

I think the best support comes from those who 'get it; due to personal experience. Or perhaps a trained counsellor would be able to offer a listening ear?

 

Thinking of you.

Naz x

Poppy3
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

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.

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

You are so right ladies 😞 I definitely agree with you when you say you were poleaxed Bella60. Me too, you can say that again! Hope u having a great break xxx 

joyfulthoughts
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

It's easy to believe in all walks of life that the 'professionals' know best, but, with the right information, it is only ourselves who can truly know what is right for us. We all respond so differently to everything, don't we? When I have mentioned back problems to my oncologist she told me that even women who have only had mastectomies have stretching and muscular issues...made me feel a little better. xx

bella60
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Susie Soo I agree that it is important that BS know that replacing breasts with lumps of muscle(however skilfully applied) are not necessarily the answer to a perceived problem and that there are definite  side effects. BS need to be more realistic. Also realise that when women a recently diagnoised, for my part  I was poleaxed, so not in a position to make a  decision. It did nt seem to dawn on them that I could be in a state of shock. I looked alright , but internally I was on another planet.May be I am being hard, but for them its all in a days work, but for me it was a nightmare. Surely they would realise  that.??? They did nt seem to be aware. Personally the breast reconstruction nurse was a waste of space.

 

 I am going away for a few days . When I come back I am going to arrange a place. Would People consider London more achievable? Let me know.

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Orrrr J and F, I am so sorry that you cannot make the intended get together 😞 I wish there was the perfect place that would suit everyone 😞 With regard to your BS's, I believe that you have to be honest and transparent because progress needs to be made in this area. I, on the other hand, find that I cannot be anything but. I have said in the nicest possible way that I think the hospital is a dump lol and that I believe the BS has done her best but sometimes your best isn't good enough. I have tried to explain that the system is letting women down. I do believe that there are ways and means of saying how you feel without causing waves and fuss. In other words, diplomatically. I do hope that you agree, keep in touch one and all xxx  

FizzB
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Haha joyfulthoughts!! I have the same problem with my PS, lovely man (very charismatic!!) and always so pleased with how my boobs look he completely disarms me!! Having said that, I am keen to see him again to talk about my ongoing discomfort as I'd hoped to feel some improvement by now. Due to see him at the beginning of September so am psyching myself up already!!
I'm down in Salisbury so sadly won't be able to make the meet up in Manchester. Sad to miss it as the opportunity to chat to others who are in a similar predicament would have been great. I spend most of the time with my "game face" on, smiling & grateful to be cancer-free (which I am, obviously!!)
joyfulthoughts
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

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

feistyflora
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Poppy, I feel very upset reading about all the problems you ladies are having to contend with. Prior to my operation my Consultant had the standard discussion with me and started to offer me reconstruction but I (rather rudely) interrupted to say "thanks, but no thanks" because I had made my mind up in advance not to have it done.  I don't know if this will be helpful but I recently purchased some bras from Peacocks which are the pull-on type, have adjustable straps and are slightly padded (they also have a useful open space at each side which would allow you to put in some extra padding). They were only about £4. I actually bought two of these bras for my sister who had a partial mastectomy many years ago - she is celebrating her 80th birthday today!!!

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Ooo Joyful Thoughts, good support, pretty and looking good under clothes are my priorities. Orange Girl, I loved loved loved reading your post 🙂 You could be just the kind of person to empower ladies to reject reconstruction. This is clearly your vocation haha. I think your saving grace was that you were not offered immediate reconstruction and therefore you had time to think. As someone who was offered immediate reconstruction and made to feel that it was impossible to live a full and happy life without symmetry and the womanliness of two breasts, I would have loved them to have said that I was not a candidate for immediate reconstruction. We need to empower women to say no to immediate reconstruction and no to reconstruction period. I really, truly believe that women will be healthier specimens if we say no to this and that somebody somewhere needs to help us to find other ways of living full and active lives after a breast cancer diagnosis. I say that the medical profession needs to draw back and review their clinical procedures and start thinking about our physical and emotional needs more. Sorry to keep going on about this but I am so on it after reading all the posts that this thread has created...and breathe haha. Now Bella60, sounds like you are on the right track with a small, intimate gathering. Afternoon tea sounds good as I am teetotal but the option of alcohol is still there for others. I think we should pencil in a date for the afternoon of 26 September as I work term time only and cannot get time off during the week unless it's in the hols. Unless we leave it until October half term? I am really liking the sound of tea and cake plus some motivation and empowerment thrown in for good measure. All good themes for a little get together...Parting thought for the day though - strange that I have had to create this thread to address our physical and emotional needs after breast cancer/reconstruction?!? Why would these two very important bits of our human makeup be so badly addressed by the health profession?? xxx       

bella60
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

 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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Poppy3
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi - Thanks for your reassurance that I am doing the right things and I will get there. I was also waiting for 3 lots of results which I think doesn't help when you are waiting for the results. But, good news, results today and all came back clear so now can relax for another year! Feel more positive now and I'm going to treat myself for getting over this hurdle. I have also called the Doc and she is arranging some physio for me which I have sidestepped in the past thinking it would get better on it's own. Also phoned a gym to arrange a visit to see what they can offer.

I agree that you can't grumble and when people ask how you are they don't really want to know how you are really feeling! You get used to saying "Yes I'm fine thanks"

 

From a bra I would want comfort, to be kind to those scars/perhaps removable pads to the help fill out remaining boob/improve shape of recon -  this would help to make them match to give you a wider selection of clothes to wear/feminine .

Thanks again ladies for all your help..xx

 

OrangeGirl
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

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.
joyfulthoughts
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Soosie, I agree with the work you have to put in to get good mobility, and jacuzzis are great for a massage, you can aim them just at the right points! If you have any particular requirements you would like in a bra, let me know in order of importance. That would be really helpful! Xx

joyfulthoughts
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Poppy, thanks for your kind offer to help trial my bra design. I've realised it's going to be quite a slow process as I'm on design number 2 and it's still not quite right - have had them made by a proper bra factory so it's not cheap either but worth doing properly. I'll let you know! In the meantime if anyone could give me a list of the most important things for them - like support, comfort, prettiness, etc in order that would be really helpful. I would like it to be a pull on so it may not be so suitable for larger busts....

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Orrr Poppy3, sounds like you are not having a good time :(. I will be honest and transparent with you in a way that I think our Consultants/ Physicians and Plastic Surgeons should have been. Six months is still very early days and because all your energy is still being used to heal your body there is probably not much left for you. You are going to have to roll with it but don't expect too much from yourself. Personally, it has taken me two years to get to about 85% and I have only got this far because, as well as my usual forms of exercise, I have joined a gym. There is a time when I would never have set foot in a gym and would certainly have never been seen dead in lycra but here I am doing both. It is the only thing that gives my body any relief and, after a workout, the jacuzzi jets and steam room really help. I cannot comment on the Tamoxifen. I personally decided not to take it because no Doctor could confirm one way or the other if it would help me with the type of cancer I had. I did not want to make myself more ill and chose to actively fight off any demons with good sleep, exercise and clean eating (amongst working, looking after kids and running a busy home). I do think you will get better in time but it is not going to come naturally, you will have to go out out and actively seek ways to make you feel better. I am realistic enough to know that I will never be 100% but would like to get to 95%. Joyful Thoughts, maybe one of your lovely bras would help us! I for one am wearing big ugly ones at the moment lol! A few of us on this thread are still thinking about meeting up at the end of September may be beginning of October. I am still trying to think of a small, comfy venue but I am so rubbish. It is an open invitation where we can enjoy a bit of chat, relaxation and refreshments. Lets get some ideas coming cos I'm not doing very well with this!! xxx    

Poppy3
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi - I do think there is a gap in the market and I'm so pleased to hear that you are trying to fill it. I was quite shocked at the small range of bra's to choose from, tucked away in the corner of the shop - there are 100's of ladies that need to feel pretty and comfortable after what they have been through and yet the choice is awful. I also noticed the remaining boob is forgotten, why wouldn't you want a bit of humph there too. Some of the bra's I saw didn't even have a lining. I must admit I did get drawn into buying a couple of these only to go back to BHS and buy a pull on bra which at least had a little pad in to give you more shape. I had one in every colour.

Well done for taking this forward. Would be happy to help with trialing your product. Good Luck..xx

joyfulthoughts
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hello Teddy (and everyone on this thread), I had a double mastectomy and LD reconstruction in July 2010, although I had the 'tight bra' syndrome, my movement was fine to start with until about a year later when my shoulders completely froze up and it took me a long time to get back to anything like normal pain free mobility.  I too am in two minds whether reconstruction was the right decision, but knew I would not go back later and was told I would get a better result from immediate reconstruction.  In the two weeks I had to make a decision, I coudn't find any particular feedback against it. I am better now after physio and yoga and swimming, but will never be the same - my back is bony and bras are uncomfortable for me too.  So - I am in the process of trying to design one - thinking if it is comfortable for me, it would be even more comfortable for ladies who havent lost their LD muscles!  I don't know why I didn't imagine such surgery would have a massive effect on the way my back feels.  Makes me feel rather stupid!  I have made a few prototypes and am learning bra construction.  I want to make something pretty in bright colours, simple overhead like the Sloggi, but with cup definition to give my little bumps some shape (all that trouble and I hardly have anything to show for it!) in soft fabrics, maybe even naturally dyed.  Won't be so good for bigger busts, as I want to go for comfort. Very best wishes and kind thoughts xxxx

Poppy3
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi ladies. It does keep me sane reading through this post. I was just wondering if any of you ladies feel the same way I do. I am 12 months since mx and 6 months since LD Flap recon, Does the pain ever go. Up until last Sunday I felt like I was doing great more energy,less tears, pain seemed to be easing, feeling positive about everything. Then I get up Monday morning and every bone aches, I struggled to get through work all week, it was such an effort, good for nothing when I get home, tears appeared over little things etc. I have spent this weekend resting thinking perhaps I had overdone it last week. I just feel exhausted. I thought I had settled with tamoxifen, but do the side effects just keep coming just when you think its ok. It is really difficult to stay positive when you are in pain all the time and have no energy. Any advise would be appreciated..xx

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Aww Bella60, I'm sure they could have given you the results there and then surely 😞 Well, September sounds good, the end would be best for me and, if we put our thinking caps on, I'm sure we could come up with a suitable place. Will have a good think xxx 🙂 

NAZ
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Bella, yes i am up for that if everyone else is?

3 weeks is a long time to wait? I demand my results once the doc has had a look (on the day). I don't think ANY woman who has had a previous BC dx should be made to wait for any results at all.

bella60
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

 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

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Oh my word, I really feel that this going places now 🙂 Hooray!!!! Ash and Catokitty, it is fabulous to know that you felt absolutely certain in your decision to remain flat. I am guessing that you received some pretty good support at the point of diagnosis. I was initially diagnosed with breast exzema (!!!) and skipped off down the garden path in to the biggest false sense of security you could possibly imagine after receiving that news so, when I was correctly diagnosed with breast cancer eighteen months later, I think it sent me to as near to a nervous breakdown as you can get. Also, it was almost as if, because I am at the younger end of BC and active in hobbies such as swimming etc, that immediate reconstruction seemed to be the perfect solution.

 

Jayney, you have had the operation now and it is still early days so I can honestly say from experience that you will get lots better. However, for the sake of honesty and integrity (because I think that is absolutely necessary here) I will say that for two years I have been stuck on about 80%. It has got to the point now where my preferred forms of exercise i.e. walking and swimming simply do not provide what my higher maintenance body now requires so I have reluctantly joined a gym (wouldn't have been seen dead in one before lol). I am not daft enough to think that I will ever be 100%. I know that now but, I would like to think that by doing this, I may get to as near to this as possible. The gym seems to be offering a little bit of respite from the tightness, stiffness and discomfort if only for a short while and I am actually quite enjoying it. Another fundamental change is that I have taken to wearing lycra for the first time ever! Haha.

 

Anyway, as for meeting up, I'm not going anywhere near a hospital sorry. I think central Manchester would be a good place. Maybe choose somewhere quieter where they do afternoon tea so we can do what women do best and that is have a right good GOSSIP and CHAT lol. Well, I'll start this off then shall I? LADIES, I'M IN!!      

NAZ
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

No , I wouldn't want to meet up in a clinic or hospital either, in fact that is the last place I would want to be! Maybe if we could gather numbers, then we could perhaps meet up in a park, pub or coffee shop/restaurant??

 

I think everyone who has contributed on this thread, has made some really valid points. I guess though that those who are adament that they don't want reconstruction, don't and won't be swayed, hence the 'flat and fabulous site (I think FB or something similar?) However, society and media portrayal of women NEEDS to change! How many women do you see on the television who clearly only have one or no breasts? How many intimate scenes in films do you see, where women are flat chested and bald, minus their eye brows, lashes and all other things feminine?? Us ladies who have had a BC dx are STILL women but I suppose that if the surgoens are able to offer immediate reconstruction, then they will. I know for one that i panicked like mad when the surgeon said my breast was going, I wanted SOMETHING to there, anything at the time, seemed better than nothing. The truth is that UNLESS you are told that you need a MX, you never ever think of life with one or 0 breasts, you just don't! Once that DX comes your way, you have NO idea how it is going to be, flat or reconstructed. It wasn't until at least two years down the line that I began to feel low about my reconstruction and Annie, you make a very valid point about the OH and what a reconstruction means to them. My OH has never touched my reconstruction and to be frank, I would not want him to. Something which has caused me so much emotional pain in the past and still does at times, does not get a look in as far as the bedroom department goes! But NO ONE ever tells you about that do they? BCN are not exactly forthcoming in saying 'oh and by the way, that mound which sits on your chest, well neither you or your OH will be able to feel it, it won't move and that nipple you have created from your back, well if you touch it, not alot will happen! I don't know, i think the whole concept of breat reconstruction needs to be re thought and the cards put on the table. For me, the lack of sensation does not make these huge and compromising operations worth it. For others, the discomfort and stiffness is also a major factor. The scarring is also a big thing for me, EVERY time i look in a mirror before my shower or bath, I see those scars and I wonder what they are all about. Looking at them though,there is one sure thing - there is no getting away from the fact that I have had a BC dx!

 

naz x

bella60
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

 hi thats rather disappointing. I would not want to meet at a hospital, if I never saw one again it would be too soon. I feel i have been conned by the system., which is thre reason it would be good to meet up with other the women who have had a LD.

June_BCC
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Bella60

 

I have been advised that we are unable to book rooms.  Maybe your local hospital or clinic may be able to help.

 

best wishes

June

June_BCC
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Bella60

 

I'm not sure if BCC are able to book a room so I will pass your post onto the appropriate department for them to have a look at.

 

Best wishes

June, moderator

jayney234
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

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.

bella60
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

 Hi Soosie soo, you keep saying all the things I am thinking. You are so right , it seems that if a women does not have breasts of any description, they do not count in society. The world is going to stop spinning?? I do not think so. I am hoping to arrange a meet up soon . It could be a start, to change  the way things are.

bella60
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

 Hi Jo I  was thinking that Manchester could be a good place to meet for the ladies on this thread. Would it be possible for bcc, to arrange a room , which we could hire for a small charge. Bella

 

catokitty
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

This is a really interesting thread . I had single mastectomy and surgeon offered me immediate reconstruction with tummy tuck job and I said no thanks and we left it at that.   I don't think being lop sided makes me any less of a woman and for me it was a common sense decision:  Did I want a longer operation which would take longer to recover from with more possible complications or did I want a shorter more straightforward one?   I don't regret my decision and am happy with the way I am.   I do wear a prothsesis because my remaining boob is 38c and I think I look a bit odd without it but that is just me.    Reconstruction is a big operation whichever option you have and people need to be able to think it over carefullly without being rushed into it.  

Ash66
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Well said Soosie

I had a bilateral mastectomy in April. My surgeon asked if I wanted recon at the same time and I said no it didn't interest me. He looked surprised but actually quite relieved but did ask me again the next time I saw him and I said no again. My bcn seems surprised also every time I see her as I'm not wearing my prosthesis and asks me about it but I can't tell you how easy and liberating it feels to go flat. I know recon is still available to me any time I want but I'm not sure I ever will and these posts reassure me I was right to delay it. I'm still gathering information and attending a session later on in the year run by a plastic surgeon to see what he says. I'll then take as much time as I need to be totally sure of what I want.

Thanks for the reassurance.

All the best xx
Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Annie22, hallelujah, hallelujah!!! You speak such sense. NOBODY SHOULD EVER BE MADE TO FEEL AFRAID OF LIVING WITHOUT BREASTS and A CAMPAIGN FOR ADVISED DELAY IN RECONSTRUCTION. I feel that this thread is gathering pace and that something needs to be done. Doctors, we need less of the clinical stuff and more to support us physically/emotionally. It's gone too far and we have to live like this for the rest of our lives now!!! This is the twenty first century and you need to STOP doing this to women!!! Annie, I am so sorry to hear of your struggles, I wish there was something that I could personally do to make you feel better 😞 What you have been through is all so unnecessary 😞 As for the OH, well, it will simply never be the same for us will it, I hate to be so blunt 😞 Do you think that Surgeons feel that, by offering immediate reconstruction, that there will be absolutely no hiccups or effects to our love lives?!?! Well, I have a message for women everywhere now, if ever you have the misfortune of ever receiving a breast cancer diagnosis, NEVER EVER let anyone make you feel that it is not possible to live without a breast/breasts. YOU CAN STILL BE BEAUTIFUL AND A WOMAN AND YOU CAN STILL LIVE A FULL AND ACTIVE LIFE. I EMPOWER YOU. Also, don't be tempted by Doctors to accept a ONE OPERATION FIXES IT ALL solution...it DOES NOT fix it, it makes things WORSE. Somebody, somewhere needs to start reviewing their working practices. And finally I am going to lay it on the line... IT'S NOT GOOD ENOUGH, THE WHOLE THING NEEDS REVIEWING AND AN AWFUL LOT OF MISTAKES ARE BEING MADE!!! ENOUGH IS ENOUGH!! xxx      

Annie22
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Haven't been on this for years, but this thread is amazing. I had mx, then immediate ld flap recon with implant for DCIS. Trouble is, the new beast was contaminated during the recon, so I got cancer in the reconstruction. Took me ages to be taken seriously by my doctor. Eventually had new cancer removed, so I have three quarters of a breast, with a hard implant due to the rads. It hurts all the time, my back hurts and my skin has stuck to my rib cage where the flap was taken from. Nothing can be done apart from taking the whole thing off and trying a diep. If I hadn't had the immediate recon, I would not have got cancer. No one tells u of the contamination risk, the 'glued' back etc. I would support a campaign for advised delay in reconstruction. No one should be scared of having no breasts. It gives the mind and body time to think. Removing the cancer is one thing, but making a decision about something you have to live with for ever is too hard all at once. I agree with everything that's been said before. Well done all of you for bringing this subject up. What I didn't read was the effect on the oh too. Mine never touched my new breast, even before it was disfigured. He's a kind man, but couldn't get over the strange feel of it. He did try. Very sad. x

Jo_BCC
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi all,

 

Hope you don't mind me butting in here, but I noticed that there's a few of you from the Manchester area.  Our Services team have today posted regarding a Younger Women Together session which they will be running in the near future.  Below is the link if you're interested.

 

https://forum.breastcancercare.org.uk/t5/Younger-women-and-families/Younger-Women-Together-Mancheste...

 

Thanks

 

Jo, Moderator

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Oh, just realised your appointment was today Rose20, very much hope all went well for you 🙂 xxx

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Rose20, there seems to be a few of us from the Manchester/Cheshire area! Anyway, thank you for your very valid comments, all very helpful. Best of luck with your hospital appointment and, whatever you do, make sure that you tell them how the operation has left you! I most certainly am going to be having my say next time I have to go for an appointment! Keep in touch Rose20...xxx

Rose20
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

I have been following your thread with great interest and just found the courage to join in. I agree with all the comments made. I had a LD flap in August '13. After having two infections, one soon after the operation and the second after my first Chemo. my consultant was told (by an Infection Deceases Consultant ) that my implant would have to be removed. At this time both my back and breast were very painful. After the implant was removed the pain did ease in my breast but like the other ladies I am left now with pain, stiffness and discomfort in my back(operation side).
I am 69, probably older than the other ladies but my Consultant said he thought I was fit(I did aqua aerobics and walked) and a good candidate for the operation. I see my BC tomorrow for my 12 month test and the result of a body scan I had four weeks ago. Sorry I have gone on about my treatment but I do agree ladies should be told about the disadvantages beforehand and I would like to join any meeting or campaign about the op. I also live in Manchester.
Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Fabulous contributions ladies, I really do feel that we are speaking the same language. I just don't know what the way forward is. RedBev, it is very difficult coping on your own. I am in the same boat too but, just by communicating on here, we can take comfort in the fact that we are not alone and are experiencing lots of the same thoughts, feelings and problems BUT WHO WILL LISTEN TO US?? To our Surgeons, we are a great success!?!?! Would appreciate some feedback BCC. I feel it's just the tip of the iceburg on this website. Imagine how many others there are all feeling the same way who don't use this website. Well, I for one am not ready to be finished off yet although there are days when I certainly feel that I am on the scrapheap!!  😞 😞 😞 xxx    

FizzB
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Elsa, I couldn't agree more. The possibility of living without boobs was never discussed with me, just mentioned briefly when I had my diagnosis. The whole thing came completely out of the blue after a "cautionary" biopsy after a routine mammogram so to go back & be told bilateral mastectomy was needed was a huge shock. Surgery was 3 weeks after my PS consultantation (on Christmas Eve) so no time really to think about what I was doing & as you say Redbev, I'm very much the same in putting my "brave face" on. As previously mentioned, the information I was given was all about the aesthetics; no-one said I would be left with long term numbness in my back ("loss of breast sensation" was mentioned) & discomfort/pain front, back & sides. More relevant and honest information is definitely needed.
Redbev1964
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

I had my LD flap reconstruction in Feb, I am healing well but still have very little feeling in the surgery areas. Sounds like a great idea of meeting up as it would be great to talk to people who know what I am dealing with, I feel I can't show any feelings as I don't want to upset anybody. I am in Manchester.
Elsa
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Us ladies going through the trauma of a breast cancer diagnosis aren't ready to think about all the risks and benefits of having a reconstruction at the point of diagnosis.  When I was first diagnosed my first thought I must admit was 'well i can have a reconstruction and I'll look ok' but I didn't know then what it involved.  I was never offered an immediate recon and with hindsight I'm glad about this because my feelings about it have changed and I can think more clearly now that I'm 3 years down the line.  

 

The Drs are very good at pointing out the so called benefits i.e. cleavage, looking 'normal' in clothes etc but not so good about telling us about the drawbacks and we need this information to make an informed decision.  In my appointment to discuss recon I was shown a powerpoint presentation which was fine but I felt that the information I really needed was only gleaned by me asking direct questions. I'm very much a 'worst case scenario' person and needed to know what if e.g. the flap fails (they can take more skin from buttock so therefore more scarring again), post op infection rates (as I had a nasty infection after my mx); what happens if you gain weight after recon does the recon grow with weight gain etc.  

 

Anything this website can do to raise the profile of this issue I will fully support x

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Hi Greenleaf/Janet 🙂

I very much enjoyed reading your post, thank you. You have made so many valid points. I just don't really know who will listen or where we can go with this. How can the treatment of breast cancer be generally good but the whole reconstruction thing such a grey area and so poor? The BN who I saw after diagnosis had to hunt high and low for a dusty old book full of tatty photos of reconstructions and I think I was expected to make a decision after only one appointment. I had to request two further appointments (probably at great inconvenience to them) and even then I still didn't really get all the answers I wanted!! It's completely laughable really. I really do fear that we are being sold short and fear for women going through this in the future. The empathy, compassion and support simply isn't there. I don't think the situation is helped by hospitals employing dual Oncoplastic Surgeons. On the one hand, they are dealing with cancer and on the other, cosmetics. Maybe it's a ploy by hospital trusts to get two for the price of one which in terms of patient care means that we are only getting half the standard of care that we should be getting because they cannot completely concentrate on one area or the other. For example, one day they might hold a cancer clinic and the next day, a reconstruction clinic. You can see where their priorities lie if they are handling a huge workload of both. Greenleaf, I am very interested to know that you are a Journalist and feel that this puts you in a very good position to put something out there. What do you think??? Also, the other day, I happened to have a look at the old reconstruction booklets that I was given at hospital when I was diagnosed and, as someone who is now on the other side, I really feel that they are insufficient and out-dated. Anyway, over and out, I'm going for a well earned sit down and a cup of tea after a busy day. xxx     

greenleaf
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

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

 

 

Soosie_Soo
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Oh my word ladies! Some very interesting posts coming through now! Teddy, I can assure you that you are not going mad although I have to admit I have felt the same often over the last few years! Well, firstly, I am looking forward to hearing from BCC as to whether there are any ongoing campaigns about this type of thing. Also, I am pursuing my own line of enquiry with my hospital in terms of diagnosis, treatment and aftercare that I have received (or lack of it). I feel very strongly that the powers that be should not be recommending surgery that can actually leave you worse off. How can a member of the medical profession clear you of the rotten cancer with one hand but then make you worse with the other with an operation that does not do what it says on the tin?  I feel that I have to find a happy medium between moving on but dealing with the situation at the same time. I am in Manchester by the way and would love to meet up as there is not another living sole that I know that I can talk to about this! It is just me, myself and I. It is a very lonely disease that's for sure. xxx 

NAZ
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

I know what you mean Poppy and really we do need to give ourselves a huge pat on the back because BC can really impact on us hugely. Today I was listening to one of the 7/7 bomb survivors on the radio. She spoke of having her left arm amputated, ear drums blasted, hair singed, broken bones and being in a coma for 3 weeks. She wasn't angry with the bombers, but just wanted to get on with the rest of her life. Well I think that is the same for anyone who has faced trauma. She also said that on her good days, she is reminded of what happened when she puts on her prosthetic arm, but refuses to allow it to get her down.
Not sure where I am going with this, just that we will never forget, but learn to live with and accept that at times certain things will trigger the trauma. We are strong women!!!! Xxxxx

Poppy3
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Thanks Naz. It does get easier and it it good to sit and reflect on what you have done and then you realise how far you have come.I do have days where I don't think about it so much and start feeling pleased with myself then I see a poster or hear something on the radio. Take yesterday, it was my daughters graduation so already an emotional day but I was doing ok. Then, one of the lecturers gave a speech because he was given a fellowship...he started talking about trials and his time in sugergy...I felt myself go hot all over.....I knew what was coming....he talked about results in Breast Cancer and how many survived etc....the tears just rolled down my cheeks. Good job we'd had the photos taken. I always feel stupid after.  It just feels sometimes you can never forget it even on your good days xx

NAZ
Member

Re: LD Flap Reconstruction That I Feel Like Ripping Off My Chest!!

Oooh a meet up sounds good! I am in Cheshire, but happy to travel...

 

Poppy, best of luck with your check up this afternoon, don't forget to let us know how you got on. I have to say, I am 5 years down the line and if i stop and think about that rollercoaster journey I was on, it does make me feel very emotional. I think it does lessen with time, but for me, it will always be there..

 

Bye for now

Naz x