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!
