Lymphoedema
Have had double mastectomy 6 days ago with lymph nodes removed. What horrors should Iook out for? Forewarned is forewarned.
Forum Discussion
Hi @judys
Lymphoedema isn't automatic, you might have no problem. Keep up your exercises, may help it not occur. The thing I find hardest is that it can occur up to 15 years after surgery. I am almost grateful (not quite!) that I got it after 7 months, the tension could be killing! It can be temporary, it can be occasional or it might be with you for ever (as far as we know now, but that may change). I have the latter. I wear a compression sleeve. It sounds horrid, but I can choose to hate it or accept it and I find accepting it much easier all round. It took me a while to find the right one so if in that position my best advice is do not accept something that makes your life a misery - one of mine was badly fitted and like a good little soldier I persevered with it, making myself miserable (one of the few times I got in that state during treatment). It was all wrong and I should have got rid of it much earlier than I did.Most people with lymphoedema find the right balance of exercise, elevation, massage, compression etc for them - it can vary. Advice from a qualified and registered lymphoedema therapist at the outset is usually very helpful. Many of the old tales (you can't use your arm much, mustn't lift things etc) are now out of fashion but the impact may still vary a lot. I have no discomfort or heaviness at all, exercise (lift weights - not huge ones!), travel etc. Getting treatment as soon as you think something may be wrong is wise - don't put it off in the hope it may go away by itself - it may do so, but in that case you have lost nothing by getting early advice. Prevention is better than cure, so best wishes for staying free of it.
Lymphoedema isn't automatic, you might have no problem. Keep up your exercises, may help it not occur. The thing I find hardest is that it can occur up to 15 years after surgery. I am almost grateful (not quite!) that I got it after 7 months, the tension could be killing! It can be temporary, it can be occasional or it might be with you for ever (as far as we know now, but that may change). I have the latter. I wear a compression sleeve. It sounds horrid, but I can choose to hate it or accept it and I find accepting it much easier all round. It took me a while to find the right one so if in that position my best advice is do not accept something that makes your life a misery - one of mine was badly fitted and like a good little soldier I persevered with it, making myself miserable (one of the few times I got in that state during treatment). It was all wrong and I should have got rid of it much earlier than I did.Most people with lymphoedema find the right balance of exercise, elevation, massage, compression etc for them - it can vary. Advice from a qualified and registered lymphoedema therapist at the outset is usually very helpful. Many of the old tales (you can't use your arm much, mustn't lift things etc) are now out of fashion but the impact may still vary a lot. I have no discomfort or heaviness at all, exercise (lift weights - not huge ones!), travel etc. Getting treatment as soon as you think something may be wrong is wise - don't put it off in the hope it may go away by itself - it may do so, but in that case you have lost nothing by getting early advice. Prevention is better than cure, so best wishes for staying free of it.