LD recon three years on

I’d be interested to know whether anyone else has started having problems with the opposite side after a LD recon. I don’t think I quite realised at the time what a huge operation it is, I did my best to exercise etc but the scar is still pretty tight and I guess there’s just a lot of fibrosis where the muscle was taken away.there’s also an area below the scar which is numb, and the tissues are still quite tender even after all this time. however…i’m also getting a sensation of tightness round the *other* side of my chest, almost mirroring the scar. it feels really odd and sometimes actually painful. of course i’ve been panicking, any pain, spot, lump or funny sensation anywhere freaks me out and i know i’ll have to go and see about it, but would be interested to know how people who had the same operation are getting on a few years down the raod…

Hi

I had an LD reconstruction in 2006. I still have a certain amount of numbness in my back.
I also still sometimes feel as it I have a tight band around me under both breasts. For while I felt as if I was getting a bit paranoid about my good breast, thinking it had returned in that breast (pains and what I thought was a lump) to the extent I made an appointment at the breast clinic and had a mammogram before it was due. Everything was clear.

In December I had CT scan because I felt stiff and a feeling as if the side at my shoulder blade and arm was full of cotton wool, like a doll that you could pull the arm out and put back in. (sounds daft really!) It was clear as well apart from what they think is scar tissue. I go back for a follow up scan in six months. I also find that if I reach a certain way sometimes my recon side and back go into a painful cramp for a minute or two.

I don’t think we do realise just how big an operation it is and how much pulling about we undergo so I really think we are always going to have some niggles and pain.

Hope this helps a bit. Don’t be afraid to go and get anything that worries you checked out. I felt as if I was worrying about trivial things but when I said that to the consultant and BCN they said if I felt uncomfortable or worried to get in touch, it was better that they could put my mind at ease.

Love and take care
Thistle xx

Hi

I am 11 weeks post op MX & LD Recon, I totally agree with you both that it was a far bigger op than I realised. I ensured I did my exercises from the hospital physios regularly but had not seen any more improvement in the last 3-4 weeks, beginning to think I was at my limit.

I have however started physio, had my first appointment last week. She was excellent & gave me different exercises to use to help stretch the connective tissues around the scar on my back & also stretch the pectoral muscles above my breast. She also advised will start working on my back massaging & helping improve my range of movement.

The one thing that will have to wait is any work on my new boob as she has to wait until my Cons has finished pumping me up.

I would def recommend requesting some physio as long as there is a specialist in this in your area, mine is the only one for the whole of SE Wales.

Susan

Thanks - that’s interesting Thistle as that almost exactly describes what I’ve been getting. But it comes and goes, along with lots of pain and stiffness around the shoulder-blade. But the real problem is I’m too frightened to go back to the clinic. I’m obsessed with the idea that I might have bone secondaries…there’s absolutely no reason why I should have with the type of cancer I had and no lymph node spread…but that’s where the mind goes. Most of the time I feel well, but I had a horrible flashback last week when I went to a new dentist…he did a really thorough checkup and X-rays, but when he said “Now, I’d just like to discuss what I’ve found” I was instantly transported back into the mammography room having the biopsy, where I knew from everyone’s faces what they’d seen. I know all I need to do is phone the hospital and go and see them, but I can’t make myself do it. Is that crazy?

Hi, had the LD recon on the 15th Feb, it is a much bigger op than I believed it to be, still having a seroma drained on my back every week, still getting around 100mls taken off and there is numbness and the movement is still not back to normal, maybe physio is the answer. Also the twitching sensations on the front are still “freaky”, the whole thing is generally uncomfortable and I am scared now I might have made the wrong decision, there were only 10 days between dx and op and my head was too much in a spin to do any real research! I think thistle may be right in that there may be a limit to the improvement and in the end we learn to live with the niggles and discomfort. xxxxTina

soo pleased to have found this thread! can anybody tell me if they were able to sleep on there ld recon side? Im nearly 6 weeks post op and each morning i wake up i wonder if its going to be any better? I cant seem to get comfortable at night therefore dont sleep much. Unfortunately I got an infection and had to have the implant out, now im just left with half a boob from the ld flap - wondering what on earth im doing?!!!
catkin - im sure its nothing to worry about, think we become ultra paranoid about our bodies and listen to every creak and pain. take the bull by the horns and phone the hospital - im sure you will be celebrating the good news in no time!!

deed xx

Hi deed, I use a v-shaped pillow to take the pressure off my back as I can’t lie on it either partly due to the seroma! I hope your infection clears up, will you have another implant? My reconstruction has shrunk and is left with the orange peel look skin, I will probably need an implant.
Catkin, you might feel better if you ring the hospital!! xxxTina

This is a very interesting thread, thanks for posting.

However I am beginning to worry even more now, as I am due to have a bilateral mastectomy and LD flap due to being a BRCA1 carrier.

Have any of you had this operation?

thanks

crystal, I dont know where in the country you are but here in the south there is a news presenter called “sally Taylor” that had the same surgery as yourself 10 years ago. It might be worth googling her. I wrote to her and got a copy of a documentary that she made whilst she was going through her treatment. It was brilliant to see how she dealt with everything. 10 years on, she has no regrets, she can use both arms as equally well as before and is pleased with her reconstruction. Hope this puts your mind at ease a little. good luck

deed
xx

Tina, did you just have the ld flap done and not have an implant? They have said they can put an implant back in, in about 4 months time but to be honest im worried to death about more infections and yet more surgery. Im one cup size smaller on the recon side and have this week started buying bras again. I have found that if i buy a padded one then you cant see that one is smaller than the other! I have an appointment with prosthetics on wednesday so will see what they offer. I dont have any seroma in my back but the tightness when i lay on my recon side is horrendous and i wonder if that gets any better?

deed
x

Hi deed,

my tightness has got a little better but not back to it’s original state yet. Have also ordered some padded bras now to make up for the size difference. I will have to consider the implant after chemo has finished, still have 5 cycles of FEC to go. But like you the thought of more surgery is daunting. For now, I would be pleased for the seroma to disappear and for the back to regain its before surgery feel.
Thinking of discussing the impact of physio with the surgeon at next appointment which is in June.
xxxTina

Hi Deed,
As I’ve said on this forum before, the recovery from LD seems to be very long and slow, but you are still in the very early stages at only 6 weeks post op. I also had trouble sleeping on my recon side but it gradually became easier and now it’s fine. The only problem I still have (my op was November 09) is that my shoulder on the recon side gets quite stiff and painful at times and I find I have to change position quite alot.

Hi again Tina,
I’m sorry to hear you’ve still got a seroma and that you think you may have made the wrong decision. Don’t give up hope of improvement. My surgeon said I should expect improvements up to a year after the op and another lady I spoke to (under a different surgeon) said it took her nealy 2 years to feel right again. Apart from a few niggles in my shoulder I feel like my old self and am not feeling restricted in any way - but it has taken time to feel lkike this. I used to get those twitching sensations all the time but I hardly ever get them now. I really do think physio is worthwhile, although try and ask around for recomendations because they really do vary. x

Hi Deed

I had my mx + LD flap 9 weeks ago and I’ve only just started to be able to sleep on that side. Until about a week ago it was just too uncomfortable even propped up with loads of pillows. But it’s suddenly got a lot better! So don’t despair, you’ll get there.

I had started to feel as if the exercises weren’t making any difference and that my shoulder etc would always be stiff and with limited movement…but they are helping, it’s just really slow. I still do them every day, plus as much stretching and bending of the left arm as I can fit into my day. Pegging the washing on the line is hard but every time I stretch up I tell myself it’ll be a bit easier next time.

Also I’ve just started swimming again and that has been brilliant - I feel so much looser the day after I’ve been.

It’s a big operation. When you think about what is involved they must really manhandle you in there, far more than you realise when you wake up. They told me it would be at least a year before things had settled down. At they time I didn’t believe them, but guess what? they know about these things and they were right! :slight_smile:

Best of luck and keep stretching!
Miriam xx

Miriam, Thanks for your help and advice. Every night I try and sleep on that side so fingers crossed that one day it will be successful!!
Im itching to get back to work, if only for light duties and reduced hours but like you said, its big surgery and some days our bodies reminds us that we really do need to take it easy!!!

happy stretching!

deed xx

Hi deed, I hope it’s getting a bit easier for you with regards to the sleeping. I not sure if you are going to have or have started chemo. I have had my first cycle of fec 8/4 and found that this upset the back wound, but the onc had mentioned that this may be the case.
It’s hard to imagine that it will take such considerable time to heal, I had mine on the 15th Feb and thought I would be back to normal now… I also had some revision work done on the front scar last Friday and back to normal seems a long way off yet!! But every week is a bit better so like you small steps and a bit better at a time. Hugs, xxxTina

Hi folks…just to say that I feel much better. I went to speak to one of the nurse advisors and apparently the kind of sensations I’ve been having are quite common because of the muscle imbalance. I also think I’d been pushing myself too hard in the gym, so the “good” side was suffering. I spoke to a friend who had the same op many years ago and she had the same thing.
For those who are just newly recovering, I actually think my result is pretty good. I did swim a lot and that helped with movement in the shoulder; cosmetically it looks fine and I don’t actually care if they’re different sizes. And I’m alive and cancer-free, more to the point! so hang in there, it does get better!

Hello

I’ve just found this thread from Googling LD ops.

I had mine in June. I’ve an implant in that is half filled with saline and also expandable. Cosmetically it’s fine but comfort wise - far from it! Ive the ‘iron bra’ feeling and a tightness around the front. Some of the time I can ignore it, particularly now I’m back at work but at other times it’s a constant drag. It’s like wearing a wired- bra that’s 2 sizes too small 24/7 for 6 months.

I’m seeing my surgeon in a week and was wondering if anyone had this but now doesn’t and how they got rid if it. Did you have the implant removed? Is there anything that can be done to relieve the tightness in the back? I was given some exercises at the time of my op but to be honest they seem more generic rather than specific for the ld. I found the same with the DVD from bcc. Has anyone gone private for physio?

Any advice/tips/suggestions are welcome and wanted! I’m thinking that if all else fails I’ll invest in some hypnotherapy sessions so that I can at least learn to ‘tune out’ at times.

Xxxx

I’m nearly a year on from mine (LD only no implant) and it is still sometimes tight, sore or uncomfortable. For me, cold and damp weather/conditions are the worst, making it all feel tight; both swimming and hillwalking-with-poles make it stiff and achey! Sometimes when I stretch my affected arm (which has superb movmement) it feels like I am wearing a jacket that is too tight across the back. Also occasionally I still get the ‘rugby ball under the arm’ feeling. Still doing come exercises daily and still massaging scars with gloop.

Most of the time I just ignore it and, indeed, this morning was pondering that even though I wish I’d known this level of discomfort would/could continue, I have no regrets about the choice I made.

Hopefully you will find some relief soon.

PS if you use the advanced search facility on the forum you can avoid google!!

Edit for bad typos!!

Hi Scaco,
I too am googling for LD flap info at the mo! As you know, I’m having my op next month. Sorry you are having problems. I would whole-heartedly recommend further physio. I can only speak from the Mx perspective. Mine was last March, and I was referred to a physio for my non-surgery side a couple of months ago (I had been overdoing it and developed ‘tennis elbow’). It turned out my physio has a a special interest in BC cases, and she took a look at that side too.
I had religiously done the exercises that the hospital physio had given me, and had just presumed that it was now as good as it was going to get. But she has done a little bit of massage, and given me some further (very simple) exercises to do, and the difference is incredible. She is now contacting my surgeon to find out what his post operative programme is, so that she can work with me asap after the Recon.
I don’t know if that will make a difference, or if it all is just down to how our own bodies deal with this surgery, and the techniques and skills of different surgeons, but in terms of regaining full movement after my MX, it has been fantastic,
Hope that helps, and that work is going well,
Lots of love,
Tracey
X

Hi SCACO

I was wondering if the tightness would ever ease - and rads def didn’t help - so I saw my physio again and she gave me some more exercises to to do and one really simple tip to get more out of them and it really works.

I still have v tight days, but it is easing.

The simple tip - what ever stretch you are doing, take it to the max you can do, then take a few slow, really deep breaths. It just gives that bit of extra stretch that makes all the difference.

If you want the exercises, pm me your email and I’ll scan them in and send to you.

Good luck.
Dx