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norman_castle
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07-01-2015
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06-02-2018
07:21
Good luck with the physio, Tili. If our recent experience is anything to go by, don't give up if you find you're getting nowhere with the one you're referred to. Try a private physio via cancer-physio.com then if that's not working, find a private hospital with a good reputation for shoulder surgery and see their specialist shoulder rehab physio.
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27-11-2017
08:20
Hi Sue Hope that goes well for you. On top of everything else, my wife actually had a capsular contracture about a year after her surgery. She was in and out in a day, with very little in the way of post-op pain, complete freedom from the discomfort associated with the concrete boob, and after a couple of months, only a couple of inches of very faint scar visible if you new exactly where to look (ie underside of boob, close to chest). Nearly six years on, there's no sign of a recurrence, so presumably the different make of implant's much more to her immune system's liking 🙂
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27-11-2017
01:29
OK ... seven years on, we finally got there. My wife was referred to the Royal Marsden for a second opinion, then to their specialist physio. After a couple of sessions, the physio gave my wife an exercise to do at home which basically jiggered her shoulders and rendered her incapable of doing much at all with her upper body for the best part of three months. We then found a marvellous private physio who worked wonders (relatively speaking), and we were referred to a pain management clinic. The present state of play is that my wife's made more progress in the last six months than in the previous six years, and she's feeling far more positive about living with the limitations imposed on her by the LD flap reconstruction and radiotherapy. To sum up the seven years since her op ... 1. We were greatly misled by the surgeon, who specifically said that the only significant after-effect of the LD flap reconstruction that my wife would notice would be a limited ability to serve at tennis, row a boat or swim breast stroke. It soon became apparent that this was nonsense. 2. We now know that something like 40% of women who had a LD flap reconstruction experience debilitating after-effects. 3. Which is why a lot of places (eg the Royal Marsden and a lot of the teaching hospitals) stopped doing LD flap reconstructions.. 4. The earlier physio is started after the op, the more benefit should accrue from it. 5. It seems that hardly anybody outside the very small world of very keen specialist breast cancer nurses and physios is up to speed with current thinking on the after-effects of LD flap reconstruction and the management of them. This applies particularly to surgeons. 6. You have to do a lot of research yourself, and you have to be persistent. The help you need is available, but it takes some finding, it will almost certainly cost you £50 or more a session, and it will probably involve travelling some distance. Finally, if you do find yourself in need of a specialist physio, the best place to start looking is undoubtedly Cancer Physio
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08-05-2017
06:29
I posted recently about the problems my wife is still having six years after her mastectomy and immediate LD flap reconstruction. It looks very much like we now know what the problem is, so in case it's of help to anybody else in a similar situation, here's the short version of the outcome ... When she was discharged from the breast care team at op + 5 years, all we had to show for the best part of three years complaining of chronic upper back and shoulder weakness was her surgeon's observation that "it shouldn't be like that" and a singularly pointless referral to a pain doctor. Our GP then referred my wife to orthopaedics and to neurology. Three consultations with the first and two with the second resulted in an impressive tally of new scans (whole-body nuclear, CT and several MRIs), then discharges from both on the grounds that no problem could be found that fell within their respective territories. Long story short, last month we got my wife referred to the Royal Mardsden for a second opinion, and it was immediately obvious to us that they were very familiar with this kind of problem after an LD flap, particularly where, as in my wife's case, the patient had the full program of radiotherapy after her reconstruction. So, the good news is that we now know that my wife has upper quadrant dysfunction as a consequence of the LD flap reconstruction, and that this was probably exacerbated by her having subsequently had radiotherapy. There is no cure, but we hope that if we can get access to specialist physiotherapy, she will in time be able to lead a more normal life. With the benefit of hindsight, the mistakes we made are quite clear ... 1 We didn't question why the breast care team were not offering my wife any help with her shoulder/upper back pain and weakness 2 We should have made a fuss until she got referred to oncology physiotherapy, but didn't - because we never knew that the department existed. 3 When her breast surgeon in effect said that he didn't know what the problem was, we should have gone straight to our GP and asked for a referral for a second opinion. But we didn't, because we were still locked into "these guys are the experts, they know best" mode. If we'd requested a second opinion at that point, we'd have been where we are now nearly three years ago. There's other stuff too, like why was my wife told that unless she was playing tennis, rowing or swimming breast-stroke, she wouldn't notice any adverse effects of the LD flap; why no post-op physiotherapy, and so on. But the point I want to make is this ... Do your own homework, ladies, and if you feel you've hit a brick wall, don't just shrug your shoulders and be grateful that you're still alive - get the second opinion to which you're entitled!
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24-04-2017
01:57
And another penny drops ... We tried out the Marnie Clark skin rolling thing this morning, and immediately found that it's a non-starter for the simple reason that my wife hasn't enough slack in the flesh of her back! I knew it was like that, but it had never dawned on me to think about how little subcutaneous tissue (?) she has in that area. Even if I just press down and try to get some sort of a "wave" of flesh going rather than the "hot dog" in the video, it doesn't work. There's just no slack. Gosh. Now we have yet another question for whoever we see for the second opinion ...
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24-04-2017
06:46
@Argymargy wrote: ... 6 years on, there may be options available to help your wife that have existed previously ... It's beginning to look like that's the case. Fortunately our GP's very switched on, so present state of play is that we're waiting for a referral to the Royal Marsden for a second opinion as well as an appointment with the nearest oncology physiotherapist. Meanwhile, the research continues - and I start looking closer into private physios! ...
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23-04-2017
06:16
@FlossieM wrote: ... I suggest you really push for them to look at this and that you get a referral to a specialist plastic surgeon - or someone with lots of experience of recons. In my experience they are more open to options, as the breast surgeons tend to be more focused on the cancer removal side. My wife's surgeon is actually well into boob reconstruction, and he when she needed a capsulectomy a year after the op, he made an excellent job of it. Problem is, he simply hasn't wanted to know about her problems. When he last saw her for the final checkup at op + 5 years, the best he could do before shaking hands and departing was to say "Hmmm, it shouldn't be like that". But enough of this already. We need to focus on where we go from here - not on why we find ourselves in this situation, so thanks for your input
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23-04-2017
06:07
@whitelily wrote: ... one thing I have found on this journey is that you have to do your own research I think it's just that NHS resources are limited and overstretched and they are just so busy. Oh indeed, and the priority obviously has to be getting people into and through surgery, chemo and radio. We're just mightily miffed that (a) we were badly misled by the breast surgeon when he talked my wife into an LD flap and (b) in the five years that we kept trotting back to the breast clinic, we just went along with what they said. But hey, ATEOTD my wife's still alive and otherwise well, so mustn't grumble. Much. At least we now feel that we're almost (finally!) clued up enough to really piush hard for some kind of resolution to her problems, hopefully before we hit 7 years post-op ... Thanks for posting again, whitelily
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23-04-2017
12:08
Ooops! In my post below, for "upper quarter dysfunction", please read "upper quadrant dysfunction"
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23-04-2017
09:56
Gosh ladies, thank you so much for your replies. They've certainly widened our horizons: my wife is right now on the internets knee deep in "upper quarter dysfuntion" ... As to whether she had specialist physio help, that would have been nice. What we got instead was a couple of sheets of exercises of the walk-fingers-up-wall type to be done post-op for a few weeks, after which the lead nurse checked arm movement and pronounced all well. That was it. Six years later,the only reason we now know there's a specialist oncology physiotherapist is because I emailed the breast clinic last month asking if by any chance they knew of a physio with an interest in cording/post-mastectomy pain syndrome and whatnot. To clarify, this was a left-side mastectomy with immediate LD flap reconstruction, followed in due course by chemo then radio. According to the surgeon at the time, the only significant downside to the op would be reduced ability to serve at tennis, row a boat and swim breaststroke. The reality of it is that 6 years on, my wife can't, for example, knead bread, use garden shears, shake a rug, run for a bus, clean windows, use a hoe or garden fork. And this is made worse by the fact that she's a very keen gardener who grows a large proportion of our food. The possibility of having the reconstruction re-done hadn't occurred to us, but it's definitely something to discuss with whoever we get for the second opinion that our GP is currently trying to arrange for us. Knowing what we now know (and what we're still finding out), it's a bit galling to realise how much better things could have been. But of course, at the time, you're not really equipped mentally to question what the breast clinic says and does (or in this case doesn't do). Then later, when you keep going back with problems, you tend to accept it when they say "it'll get better in time". But hey ho, we need to move forward. At least now we realise that we're not alone in this kind of situation, and with what we're still learning on here (which includes the Marnie Clark skin-rolling thing which we'd never found online) we're getting better able to understand what the actual problems might be and where we night go from here.
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22-04-2017
01:07
This post copied here from the wrong sub-forum I posted it to ... My wife has experienced cording and tightness in her upper arm/shoulder/new boob and upper back since her LD flap reconstruction 6 years ago. As we were told at the time that the only significant after-effect of the op would be if she played tennis, swam breast-stroke or rowed, it came as a surprise to find that in fact it has left her with a very weak upper back and shoulders, to the extent that she is unable to perform many normal daily tasks. We have consulted her surgeon several times about this, but on the last occasion the best he could do was to say "It shouldn't be like that" and refer her to a pain doctor who was basically no help whatsoever. Since then, she has been seen by both consultant orthopaedic surgeons and neurologists to whom our GP referred her, and we have lost count of the scans she has had (everything from whole-body nuclear medicine to CT brain via MRI of brachial plexus) The scans revealed nothing of any clinical significance, and both consultants are of the opinion that my wife's problems lie in breast surgeon territory. We are therefore now hoping to see a different breast surgeon at a different hospital for a second opinion. Has anybody else encountered very significant tightness and back/shoulder weakness after an LD flap reconstruction? And if so, what did you find helped?
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22-04-2017
01:01
Many thanks from both of us for posting that, whitelily. We were not aware of Marnie Clarke and her skin-rolling, but it does look very promising. We'll give it a go this evening. One thing we've been up against apart from the breast surgeon not being at all keen to investigate is that we didn't find out until after my wife was discharged from the breast clinic at op + 5 years that there's actually an oncology physiotherapist to whom she could have been referred! We're now hopeful that a referral from the neuologist will get her there before much longer. Better late than never ... Thanks once again. Good luck with your own journey. I'm off now to copy my OP to the other sub-forum as you suggest ...
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20-04-2017
06:05
My wife has experienced cording and tightness in her upper arm/shoulder/new boob and upper back since her LD flap reconstruction 6 years ago. As we were told at the time that the only significant after-effect of the op would be if she played tennis, swam breast-stroke or rowed, it came as a surprise to find that in fact it has left her with a very weak upper back and shoulders, to the extent that she is unable to perform many normal daily tasks. We have consulted her surgeon several times about this, but on the last occasion the best he could do was to say "It shouldn't be like that" and refer her to a pain doctor who was basically no help whatsoever. Since then, she has been seen by both consultant orthopaedic surgeons and neurologists to whom our GP referred her, and we have lost count of the scans she has had (everything from whole-body nuclear medicine to CT brain via MRI of brachial plexus) The scans revealed nothing of any clinical significance, and both consultants are of the opinion that my wife's problems lie in breast surgeon territory. We are therefore now hoping to see a different breast surgeon at a different hospital for a second opinion. Has anybody else encountered very significant tightness and weakness after an LD flap reconstruction?
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08-01-2015
07:37
Thank you Lucy! I've posted as you suggested and will see how my wife feels about phoning 🙂
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08-01-2015
07:36
My wife was diagnosed with oestrogen positive breast cancer four years ago. She made an excellent recovery from her mastectomy, immediate LD flap reconstruction, chemo and radiotherapy, she made a rapid recovery from a hysterectomy the following year and has even weathered the intervening years on arimidex well. She is now 54 years old, has never smoked, has a BMI of 25 and normally leads an active life. All things considered, she was doing very well indeed until last January, when she developed lower back pain and muscle spasming, both in the lumbar region and around the shoulder blade/LD muscle of her rearranged side. In due course, she had a bone scan which confirmed that the back problem was musculoskeletal, and she was referred to a physiotherapist. She also started going to Pilates classes in an effort to build up her back strength again. By May we had finally realised that the back pain stemmed from the time she strained her back in the garden, and in October, with little improvement showing in her back, she finally qualified for an MRI, which revealed a "slightly bulging" lumbar disc. In November, at perhaps her 9th appointment, the physio did what she called a "fascia release" of the (rearranged) LD muscle, which almost immediately felt very sore. Next day, her reconstructed boob was decidedly not happy, so my wife ended up resting her left arm for the next 2-3 weeks because the whole area over the shoulder blade and through to her left boob still felt very sore. At this point we consulted the Macmillan breast care nurse, whose opinion was that scar tissue had been irritated by this "fascia release" and would settle down in time. She fixed us up with the leaflet of post-breast-op exercises, some of which my wife is able to do, and some of which she is not able to do because her rearranged LD gets sore when she tries. Present state of play after twelve physio sessions, the last three with a different practitioner, is that her back strength generally is slowly increasing with less spasming low down, but her left LD is still very weak and sore when it goes into spasm, the greatest discomfort being where it attaches to her arm. She has close to the normal range of movement in that shoulder, but very little strength in it when the muscle spasms. When it behaves itself, she has reasonable strength in the shoulder. As of today, her current physio is saying that the upper back/shoulder spasms and weakness are outside her area of expertise and that my wife needs to consult the breast care team. When we last spoke to the breast care team, the feeling was that the problem is down to aggravated scar tissue, which we find very difficult to accept - particularly as it is now seven weeks since the "fascia release". Far be it from me to wonder if the current physio's distancing of herself from the LD problem might be in any way connected with the fact that it started after her colleague's "fascia release", because frankly we don't want to go there. Our only concern now is to find a sensible way forward. Can anyone please suggest where we might go from here?
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07-01-2015
06:16
I'm not entirely sure that this is the right sub-forum, but with apologies for this lengthy first post, here goes! My wife was diagnosed with oestrogen positive breast cancer four years ago. She made an excellent recovery from her mastectomy, immediate LD flap reconstruction, chemo and radiotherapy, she made a rapid recovery from a hysterectomy the following year and has even weathered the intervening years on arimidex well. She is now 54 years old, has never smoked, has a BMI of 25 and normally leads an active life. All things considered, she was doing very well indeed until last January, when she developed lower back pain and muscle spasming, both in the lumbar region and around the shoulder blade on her rearranged side. In due course, she had a bone scan which confirmed that the back problem was musculoskeletal, and she was referred to a physiotherapist. She also started going to Pilates classes in an effort to build up her back strength again. By May we had finally realised that the back pain stemmed from the time she strained her back in the garden, and in October, with little improvement showing in her back, she finally qualified for an MRI, which revealed a "slightly bulging" lumbar disc. In November, at perhaps her 9th appointment, the physio did what she called a "fascia release" of the (rearranged) LD muscle, which almost immediately felt very sore. Next day, her reconstructed boob was decidedly not happy, so my wife ended up resting her left arm for the next 2-3 weeks because the whole area over the shoulder blade and through to her left boob still felt very sore. At this point we consulted the Macmillan breast care nurse, whose opinion was that scar tissue had been irritated by this "fascia release" and would settle down in time. She fixed us up with the leaflet of post-breast-op exercises, some of which my wife is able to do, and some of which she is not able to do because her rearranged LD gets sore when she tries. Present state of play after twelve physio sessions, the last three with a different practitioner, is that her back strength generally is slowly increasing with less spasming low down, but her left LD is still very weak and sore when it goes into spasm, the greatest discomfort being where it attaches to her arm She has close to the normal range of movement in that shoulder, but very little strength in it when the muscle spasms. When it behaves itself, she has reasonable strength in the shoulder. As of today, her current physio is saying that the upper back/shoulder spasms and weakness are outside her area of expertise and that my wife needs to consult the breast care team. When we last spoke to the breast care team, the feeling was that the problem is down to aggravated scar tissue, which we find very difficult to accept - particularly as it is now seven weeks since the "fascia release". Does anyone please have a suggestion for a sensible way forward now?
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