Hi Ostrich - don’t panic!
Lots of questions…I’m sure the exercises would help. Can you go swimming yet (probably not, re-reading your post)? - it’s really good for lymphoedema - worth taking it up asap.
Lymphoedema makes you feel like swearing, doesn’t it? None of us need to go through all this and then get saddled with the big L as well. If it’s any comfort to you I had a little chest lymphoedema four years ago, which did settle after some massage and wearing a compression garment for a bit. It has flared up a bit recently (chemotherapy again - taxotere - it has made me retain fluid all over), but normally I don’t have any problems there - just my arms, I’m afraid.
I think surgeons are good at surgery, not at dealing with lymphoedema. And you’re right, the risks of lymphoedema are downplayed disgracefully. It’s regarded as a trivial condition by many health professionals, who often see it as merely a vanity issue among patients.
One good place to look for more info’ is a new lymphoedema website (sorry, not allowed to post the full link) called ‘stepup-speakout’ (plus dot plus a three letter suffix which is not ‘com’). It has a special section on breast/truncal lymphoedema - and why they think it is becoming more common, which is interesting. Also, the american ‘sister’ site to this one ‘www.breastcancer.org’ has a lively lymphoedema board with lots of discussion (and useful links) on this topic.
It sounds like an excellent idea to get onto your breast care nurse straightaway and get the ball rolling for some help. The sooner you get it, the better the outcome will be. Lymphoedema can be debilitating - but it varies from person to person and very often how much help, treatment etc, they can access at an early stage.
Don’t understand the bit about about dark hairs being caused by lymphoedema - that’s a new one on me. Has this happened to anyone else?
Hope this helps - if I think of anything, else, I will post and/or bump some more lymphoedema threads for you. Don’t despair, help is available, tho’ it often has to fought (or paid) for. You may never get LE in your arm, altho’ it does sound as tho’ yours might be getting a bit puffy - it’s a good idea to keep it well moisturised and to gently rub the lotion in upwards, but not towards your armpit.
Bye for now,
X
S