I telephoned BUPA who gave me details of a MLD specialist near me, and bupa agreed to fund treatment for 6 months, i could not afford to wait 2 months for a NHS appointment.
I can only echo what others have said. Do not take no for an answer as it is much easier to manage this if caught early. My local hospital has a 3 month waiting list - absolutely shocking. When I mentioned this to my physiotherapist at the Royal Marsden she said they try to see people much more quickly than that.
Thank you Atat.
I saw doc this morning and he has given me antibiotics (again!) and more painkillers, but can't do anything about the wait.
I am looking at the LSN website now and will sort out a private practitioner as I don't want to wait 6 months for it to get worse. I have started the massage myself and hopefully that will help too.
Thanks guys. I have a GP appointment tomorrow so I will ask him about it. I am also checking out MLD videos on youtube. The nurse gave me a book about lymphoedema and there is stuff in there about massage, but I think it is easier when you actually see it.
The sleeve was very tight so I tried using a normal compression bandage which was much looser in comparison but that still caused me pain. I think my main worry has been that this has started so soon after the surgery. I had thought it would take a while if it was going to happen so I wasn't really expecting it. I should have learned by now that the thing with cancer is that you can never know what to expect!
Luckily for me a lymphoedema nurse specialist is placed within the unit I attend. I saw her as I felt I was having symptoms. She measured both arms & compared, but stated that technically I dont, the variation is insufficient, but she gave me a sleeve to wear for a flight & as & when i felt the need.
I wonder if your sleeve was too tight, but would echo the thoughts of PT on presenting for attention sooner, this is chronic, but needs proper management.
Good luck & thinking of you & keep on with your exercises... when i stop them my arm / armpit is worse.
Hi Emily. Like everything else, waiting times vary from area to area. As you're in such discomfort personally I wouldn't wait 6 months. Even if I wasn't in discomfort I wouldn't wait. This is a chronic condition, and I believe the earlier it's treated the better the results.
Have you seen your GP? S/he could refer you somewhere else, although you might have to fight for it if they're not very sympathetic. Don't know where you live but edited by mod is an expert, he is based at the Royal Marsden.Your GP may be able to get you an appointment, or perhaps you could go privately.
I find it absolutely shocking the way lymphoedema is treated by the medical profession i.e. not very seriously.
I've been extremely lucky, I noticed mine almost as soon as it developed (18 months after ANC) and was given a sleeve which I've been wearing dailing. I also looked it up on YouTube and have been doing manual lymphatic drainage with some success. Have you tried it yourself? If not, it won't do you any harm and I'm sure you'd feel better for taking some control.
Good luck. PT xx
I was diagnosed with lymphoedema 3 months after my ANC, although I had been struggling before that. My arm was constantly hard and swollen, and three times I was given antibiotics for cellulitis which helped temporarily but the swelling always came back.
I saw the breast nurse and she gave me a sleeve, but that caused me a lot of pain in my armpit and caused swelling in my side and breast, so she said not to use it.
She has now referred me to the lymphoedema clinic but the waiting list is six months! Is this average?
I don't think I can wait that long - the pain is really bad and keeps me awake at night as it hurts when I try to lay on it, and I can't sleep on the other side because of my picc line. Does anyone know if it is possible to get treatment for this privately?
Thanks for any advice.