Hi I was dx with lymphodema yesterday just six weeks after mastectomy.
It all happened so quickly, I have been referred to a lymphodema nurse.
I have read a lot about treatment on here which has been very helpful, but can anyone tell me a bit more about the sleeve we have to wear,
do you have to wear it all the time,or just at night?
Many thanks,
Jan
Hi Toronto!
And welcome, although I’m sorry you’ve had to join us. Good news, though, that you’ve been referred so quickly, as the sooner lymphoedema is treated, the better.
As for the sleeve, it’s normally worn during the day and taken off at night. This is because it functions best when the muscles of the arm are working, ie when you are moving about during the day.
X
S
Hi S,
Thanks,
Sounds sensible,do you always wear yours, on holiday etc?
Do you see a difference if you don`t wear it?
I feel such a wimp, I have had six months chemo and mastectomy and have been upbeat and positive all the time, but this coupled with my nails falling off, seems like the straw that broke the camels back!! Lol!!
Start rads next week and believe this can also affect it.
I have read your posts many times, with interest and it`s because of this I went immediately to my b.c.nurse, so thank you for making us so aware.
Take care,
Jan x
Take care
Hi Toronto
Yes, I agree so much, after surgery, chemo, rads etc, to be left with permanent and rather visible damage is a real kick in the teeth. Camel - last straw - back - break. Exactly. Is your lymphoedema very bad?
I tend to wear my sleeves most of the time in day, though as I’m not working (part-time student) at the moment I’m in no hurry to put them on in the morning. They come off for special occasions! I can manage without them for a bit, but I feel more comfortable with them on, particularly when doing housework, driving, etc.
I’ve also treated myself to some coloured sleeves to match some of my outfits - I’ve got black and white as well as ‘diaper brown’.
You’re right - rads are thought to increase the risk of developing lymphoedema by about 6 fold, unfortunately, depending on where they are targetted.
I’m glad you found the posts useful and I hope the early referral will be of benefit. When is your appointment with the lymphoedema nurse?
X
S
hi ladies i had a masectomy 5 weeks ago ,i have just phoned the breast care nurse at the hospital to say that i got a large swelling just above my wrist i wondered what was causing this she said it sounds like lymphoedema she has made me an appointment for next week ,but she didnt explain what that was she just said about mesuring my arm is this a big problem as i dont no much about this thanks lynda
Hi linda
Welcome here and bad luck on getting what could well be lymphoedema. The measurement that will be taken will be to fit you with a compression sleeve to wear to help to control the swelling.
Hopefully your prompt referral to the lymphoedema nurse/clinic will help to stop it getting worse. If properly managed and controlled, lymphoedema shouldn’t be a problem for most people. Problems arise when intervention (ie treatment) is too little/ too late/too infrequent.
The worst thing about it is that it remains incurable and tends to be rather visible. It is NOT untreatable though and there are things that can, and should, be done to improve it.
I won’t bombard you with facts at the moment - one thing at a time! If you feel like looking on the LSN (Lymphoedema Support Network - UK charity representing sufferers from all types of lymphoedema) website, that would be a good place to start.
The link is:
I imagine you’ve already been advised to look after your ‘bad’ arm - no heavy lifting, not too much repetitive movement, no injections, etc etc. I would say also to keep the skin well moisturised, elevate/support your arm when resting (especially the elbow), wear rubber gloves when washing up, avoid tight jewellry/watches on that hand… sure there’s loads I’ve forgotten…anyone else?
Oh yes, try to avoid being bitten, scratched, stung (insect repellent) or cut on that arm and if you do, disinfect it straightaway. If you are a gardener, wear gloves and long sleeves.
There’s bound to be more…?
Hope your appointment goes well - let us know how you get on.
X
S
hi s thankyou for all the info its great to hear from poeple like you te nurse didnt tell me anything ,i will let you no how i get next week thanks again x lynda
Hi S,
Thanks,
So far, my lymphoedema (about time I got the spelling right!!) isn`t too bad.
Still haven`t heard from my b.c. nurse re-referral to nurse/clinic, will chase it up tomorrow.
Lynda, sorry you have had to join us too, guess we`re all in this together!!
Take care,
Jan x
Hi Toronto
Any luck with chasing that appointment at the lymphoedema clinic?
X
S