I have recently been diagnosed with Lymphoedema. I am attending the physio at my local hospital. She has given me exercises and lovely lymphoedema garments to wear on my arm. There are times when I am fine and then there are times when I do not feel as good. I have been told that it is long term. To date the swelling has gone down slightly.
FormerMember
My hospital does a one off lympoedema meeting and I attended the other week. The physios reminded us of all the things we had to avoid, infection, overuse of muscle, sunburn and any other burns, and the things we should do,keeping the skin moisturised, massaging the skin towards the armpit and the need to continue with the exercises. I find it hard to get into my head that this is a routine I have to do for life. I agree with carol, I find the thought of lymphoedema far more worrying than the cancer!! But at the same time I don't use rubber gloves, forget to moisturise and can always be bothered with the exercises! I just hope luck is on my side!
This has all been sobering for me to read as I didn't realise that it could come later on. My op was May 2007 and I had lymph node clearance in my left arm. So far, so good, but only by luck and not management. I got a leaflet from the Rad Dept which said about wearing gloves in the garden but that's about it. I had no idea about insect bites or scratches. I try to remember to wear rubber gloves whilst washing up . I knew about sunburn but I thought that was only because the skin is compromised after radiotherapy (mine gets like eczema in that area). My consultant recommended swimming as being helpful for arm movement and I seem to recall that she said it helped the drainage of lymph. I'll have nightmares now when I think of all the things I've been careles with - changing babies' nappies, mucking my horse out , cleaning etc. Thanks for all the advice though - what a good site this is when you can find some really useful information.
I've got this rotten condition in both arms, from bc treatment. Hard to describe how much I hate it and what it has done to my life; in my gloomier moments I think that cancer may claim it, but lymphoedema has already ruined it.
I try to remember all the day-to-day stuff that everyone's mentioned here and I'm sure different bits get overlooked each day. Still, I mostly get away with it!
One of my biggest problems is the medical profession itself. It's difficult to make many of them understand that they can never use either of my arms for anything - blood pressure, injections, blood samples. I also found good NHS lymphoedema care hard to access sometimes and often had to go private for treatment.
Jazzcat, if the exercises you have been given are the current ones for post bc surgery, they are no safeguard against lymphoedema - they are just to help you regain mobility.
The workings of the lymphatic system are still not well understood - we're not issued with a standard one and the number of nodes, etc varies from person to person, as we all know. Some groups seem to be more at risk than others; diabetics, those who are overweight, older people. Radiotherapy can also increase the risk considerably. Peak time for developing it seems to be about 3 years post treatment for bc patients, altho' as mentioned earlier it can develop at any time. Flying (reduced cabin pressure) is also thought to be a trigger.
Fingers crossed for some meaningful progress in lymphoedema research!
I'm sorry you have lymphoedema, I have to admit that I have always been more concerned about lymphoedema than the cancer. I only had 5 lymph nodes removed but one had cancer in.... I mean one in 20 whats the chance of there being more 50/50 my consultant says, so I will need to decide about a total clearance or having radiotherapy, which I have to have anyway. I would hate to have them all removed to find none of them had it.
Hope the physio and exercises help your arm go down soon and that you feel better.
