Back Problems following LD Reconstruction

Public Archive
21

Hi to all of you,

Firstly I do agree with Liz, that chemo and radio do seem to aggravate a reconstruction. The problem I have had, as explained to me, is that I have formed a lot of connective tissue. this has stuck to my ribs for example and I had the LD on my left side and my ribcage on that side was being pulled so it was 2" lower than my other side. It can also stick to the bladder and bowel although it hasn’t in my case. As the LD on my left hand side has now switched off and isn’t working, other muscles have become dominant. Muscles work in groups and if one muscle weakens then the other muscle takes over, but this is what causes the pain because it’s not being balanced. I hope that makes sense?!

In the early stages swimming is very good at helping to ease that crushing tighteness. I have now found Pilates to be really good and as well as this I have been given exercises to do at home, one of which is lat pull downs using a stretchy rubber strap hooked over a door. But I would recommend getting advice on how to do this properly or you might damage yourself. The help is out there, but it seems that if you don’t ask you don;t get.

I posted my enquiry originally because I was interested to see whether my experience was very common and I suspect that it’s not and that we are probably in the minority. I certainly know women who have had very few problems with their reconstruction’s although tightness does seem to be the main long term complaint, and that’s something you do get used to living with.

A 1% minority doesn’t seem a lot unless you’re one of them, does it Carole! I suppose they don’t want to scare women off when the chances are that everything will be OK.

I would never try to influence anyone’s decision on whether to have this done, it’s a very personal thing, but given the knowledge I now have, and all the problems along the way, on balance it’s still worth it to me.

Enjoy your weekend everyone.

Judy x

22

Hi Ladies

I have just returned home yesterday after having a mastectomy right breast with immediate ld reconstruction. I feel fine but keep worrying that I made the wrong decision. I wasn’t worried about the breast or scar but didn’t realise that I would have a sunken area on my bac., I also have quite a lump under my arm where the muscle is thread through, will any of this return to normal or is this the best I can expect?.

I was originally going to go for the inflater but was told that they still would need to take tissue and skin from somewhere else as the skin would be too thin on it’s own. I thought that this was as good an option but more immediate than having the inflater one replaced for an implant later. I would just like some reassurance that I made the right decision. The breast looks good I am a bit bruised, sore and stiff but hopefully with exercise and time this will be ok.

Do you have any tips or suggestions for me.

Thanks

Ann

xxx

23

I had my LD reconstruction 2 years ago and I was surprised at how little pain there was with the op. I found immediately afterwards my biggest problem was with seroma, had to go back 6 times at weekly intervals to have my back drained.

It does get more comfortable with time, either that or I’ve just got use to it, still get the tight feeling across my back, some days worse than others and there are only certain bras I can wear, namely none wire ones which are not that easy to find, the thickness under your arm does improve.

I haven’t got much strength in that side and find it hard pulling the hand brake on when driving for example.

If I could go back I would still make the same decision as overall I am pleased with the result.

Best wishes.

Jan

24

Hi again - just found this thread again.

Judy - you have been through it haven’t you but as you say you would do it all again. I would because I like to have my cleavage. I wonder why some days are worse than others though. You just think that it’s getting easer and it all starts again.

I was told I would always have the lump under the arm where the muscle was threaded through. Mine looks large these last few days and I am sure I have a swelling. Have to phone breast nurse tomorrow and will get her to check me out.

I have a tissue expander in and am happy with the shape and wastold I could keep that in instead of an implant but the port sticks out under my boob and is in the way of my bra so would like the port removing if thats possible. Have not been able to lie on my left side in bed for a couple of weeks as it hurst but I know it will get better - I think !!

Off to bed.

Love to you all.

Liz xx

25

Hi Ann,

It’s early days yet so don’t worry and hopefully one day you’ll be sure you did the right thing. You will probably find other strange things but they do tend to settle down with time. I never had the lump under my arm that you and other people have referred to, so can’t say on that score, but my back was sunken originally and that has filled out again with time. When I had to go to the doctor recently about something else, my boob looks so natural that he forgot I have had a reconstruction!

Liz, good luck with your phone call to the breast nurse today, I hope all is OK.

Love, Judy x

26

Hi Judy

Thanks for explaining, I appreciate your response. Funny but I was thinking myself that I should try stretching and light exercise to see if that eases the tightness. Yesterday I went for Dru Yoga at my local support centre and am going to go weekly and see if that helps. Also have bought a float so I can get back in the pool and at least use my legs and again hopefully strengthen the back as trying to swim using my arms causes a lot of swelling and pain.

My reason for regretting this option is due to the nerve pain that I experience. The tightness as you say is something that I can see me getting used to and some days it is better than others.

Janice, I got some lovely very comfy but supportive non-wired bras at M & S.

Ann, you are in the very early days of recovery from what has been a major operation, you need to take time for yourself to recover. I would say do NOT weight bear at all on your arm of the affected side, and please do not worry too much about complications from this op, although I have a few complications, I do know of many women who have no problems - I hope that you fall into the no complications category. Make sure you do your exercises and gently massage both the recon and the back scar with a good moisturiser once your scars have healed. Wear a supportive bra in bed also. Good luck darlin.

Lizzie, I have not heard of anyone having both the ld recon and then an expander in the same side. One of my friends had tissue expander in and is now fully inflated and goes into hossy next week to have both the port and the temp implant removed and replaced with permanent implant. If I were you I would call your BCN and ask when not if they are removing the port.

Take care everyone, luvnstuff Carole xx

27

Hi all - didn’t get round to ringing th BCN but will do today ! I am awful though - I keep putting things off

Carole - It was only when being discharged from hospital that I learnt that I had a tissue expander in as the surgeon told me that I would be having an implant. I asked why and also the BCN but nobody knew. I was told this could stay in forever ! not sure. I want the port removing anyway as it hurts when I have my bra on. They also had in my hospital notes that I had had a right mastectomy !! it was my left !! this was the handwritten theatre notes. The nurse said are you sure? let me have a look? she had only about an hour before taken 5 drains from the left side of my body !!

They won’t be able to do anything until next year as I had radiotherapy but BCN said they could take off the "dog ear " flap on my back because that radiotherapy didn’t touch there. So looking forward to that.

Love Liz xx

28

Hello everyone. I’m 6 weeks post op for right mastectomy with immediate LD reconstruction. I must have a really good consultant - I was told all about the hollow back, lump under the arm, weakness, settling period and possible seroma. Possible! On average I go twice a week for draining and so far they have taken away nearly 4 litres of fluid. The last time was only 180 mls, so it is hopefully settling down.

I did have to go back in at 4 weeks because of an infection in the breast. The consultant opened up the original incision slightly and washed the reconstruction. They said there was a small old haematoma and lots of fluid which hadn’t drained, but the actual infection was in the skin. I’m on very strong antibiotics, but it is improving - the red area is reducing now.

All my scars have healed beautifully, I have a slight flat area at the side of the nipple which is in the middle of the infection. I have to say that I have not felt ill at all either before, during or after any of the procedures - lymph node sampling, reconstruction, “washing” and I didn’t know there was an infection, just thought it was another change of colour for the bruising.

I do experience the tightness when walking - it feels like I have a very strong elastic band round half my body and as it tightens I slow down, sometimes quite noticeably. At least I know now it isn’t a short term effect of the reconstruction. Timescale is the one thing the hospital has been very wary about, but they still seem to err around the 6 month mark for everything.

I have to say, ladies, even after reading some of your stories, I would still not change my mind. I would still have gone for immediate reconstruction - the thought of no breast or nipple was horrendous. Everyone tells me I am so brave for what I have done, but the brave ones are those of you who waited for reconstruction. Also, I will not be having chemo or radiotherapy, just hormone treatment (bring on the menopause!) .

Thank you for your comments above. I now have a better idea of what could happen and will be straight onto the physio when needed.

Best wishes to you all
Diane

29

Hi Diane - thanks for info.

I am 12 months (on Friday) and I have to say that I thought it would be better than it is BUT it is a lot, lot better than it was !!

I am looking ahead now that in 12 months time it will be fine and I would certainly do it again. I like my cleavage. My niece’s friend is due for her reconstruction at the end of the month and she is glad she has done it that way and waited 18 months. She’s had chemo and rads and won’t have that irritating the reconstruction. She is also having the other breast made smaller at the same time. She had to lose 2 and half stone before they would consider doing the op though and she has got to her goal.

I could do with a personal masseuse for my back !!

Love

Liz xx

30

Hi ladies

It’s good to know that many of you are happy with your reconstructions it gives me something to look forward to. At the moment as I only had my op 8 days ago, I still feel very tight and bruised. The lump under my arm definately feels like the muscle so I don’t hold out much hope of it getting any smaller. I was really positive before I went in for the op, but have been falling to pieces over the last few days. Did any of you feel like this?.

Love

Ann

xxx

31

Hi Ann

I think you will feel like that. It’s the trauma of everything. Before the op you are kept busy and if like me “just getting on with it”. After the op you have more time to think. I remember thinking in the middle of the night that the muscle still thinks it’s in my back - something I hadn’t thought about and nobody said anything. I feel I should have had more counselling about it and the effects. It jumps when you cough or sneeze and I used to put my arm across it to hold it in place ! It still does it but no as bad.

I am not sure whether I will get a nipple done. At first I thought no, not at my age, but I may do.

The last 2 weeks the muscle under the arm and around the boob seems to have gone hard and I am finding it hard to sleep on that side. I find it constantly uncomfie but as I’ve said before I would do it again. The muscle won’t get smaller but it does get softer. I had quite an indent and the physio worked on that and loosened it which was great because I thought I was stuck with it.

I hope you start to feel a bit better but a good weep does you good and don’t forget your exercises !!

Much love

Liz xx

32

Thanks Liz

I have been posting in the newly diagnosed up to now, but thought it would help to hear from others who had been through the same op as me.

I really hope that I can start to feel normal again at the moment I don’t want to do anything, normally I don’t sit still. I keep finding myself thinking that I am going to die and feeling lost. This isn’t like me I am normally so positive but I just can’t pull myself out of it.

Sorry to complain I know that we must all go through this, hopefully I will feel better soon.

Thanks

Love

Ann

xxx

33

Don’t apologise. I still have this thing in the back of my mind that it will come back and I think we all do but as time goes on you don’t think about it as much. God knows how I would deal with it if it did come back but we have to don’t we. There are so many fantastic ladies on this site and some have young children and I don’t know how they do it. Chemo was hard enough on my own never mind having little ones to see to.

I was always on the go before and doing everything for everybody. I dealt with my diagnosis,surgery, chemo and rads well and people say too well as some just see you as normal. I get upset when people think well you’ve had everything done now and you’re okay. But we aren’t. It’s hard and I still get upset.

I am 53 and had routine mammogram last March and they didn’t get back to me until May and then had op middle of June. Long time from March to June. My cancer was Grade 3, 6cms, HER2 pos which I can’t get out of my mind how aggressive it was.

Sorry to go on.

Love Liz xx

34

I think we really need to discuss how we feel. I know what you mean about everyone thinking you are ok, I have always been good at hiding my feelings but not at the moment. Have been avoiding friends and family as I don’t want them to see me in such a state.

Am off to get my dressings off at 11.30 so will be back on later. Have quite a bit of liquid on my back but it has helped with getting comfy at night so don’t really want to loose it yet.

I can’t believe it took so long to get back to you, you would have thought that it was obvious from the mammogram that it was there.

Thanks for letting me know how you feel, I know I’m not alone.

Love

Ann

xxx