My left arm lymphoedema is caused by growing tumours in my shoulder and chest wall. My arm is pretty badly swollen, particlarly upper arm which I now can’t lift.
I am pretty lazy about exercises and massage and though I found MLD pleasant at the time it didn’t make any medium or long term difference.
Because my lymphoedema is caused by cancer I tend to think there’s little I can do. But I’d like to know how bad can bad lymphoedema get in those whose isn’t caused directly by the cancer blocking lymph.
Jane
Hi Jane
Sorry to hear how rubbish your lymphoedema is!
I think the short answer to your question is that it can get very bad indeed if nothing at all is done.
By which I mean hard fibrosed tissue (even elephatiasis), cracked and weeping skin, repeated episodes of cellulitis, although I think this tends to happen more where legs are affected and in people with primary (ie non-cancer/trauma associated) lymphoedema, mainly because it often goes unrecognised, and therefore untreated, for years.
But wearing a sleeve, as you do, helps to maintain any improvement and slow down any deterioration. I think MLD has to be pretty well continual where arms are very bad, otherwise they simply regress too quickly.
Has your new oncologist any bright ideas? He’s at the Marsden, isn’t he, is that right? The Marsden is also the top (and very nearly the only) dedicated centre for NHS lymphoedema treatment and research. It’s also where Professor Peter Mortimer is based and he is the UK’s leading authority on matters lymphoedema. The NHS waiting list to see him is impossibly long, but he does see private patients, too. Perhaps between the two of them, they can come up with something that might help you.
Jane, I’ve also sent you a pm about this.
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