Lymphoedema

Hi Squigglyline,

I'd say if it's not resolved I would get them to have another look and say what it is if it's not lymphedema , or treat her for that, see what they say? I was told that if you get lymphedema it is important to get it treated as soon as possible, as it's easier to control it or improve it if they do it early.

Hope it goes away , with their help or on its own x

Thanks , I didn't think their was a treatment for lymphodema. just managing symptoms through massage , movement etc 

Hi Squigglyline,

I'm not sure what treatment they give, it may be around massage etc or may involve medication, but it was while discussing possible side effects with my consultant that I was told that, 'tell us straight away because therr are things we can do and the sooner the better' , so I think it's worth finding out x

Hi Squigglyline,

About 3 months after my operation my left ankle swelled each night, but was down by morning! I immediately thought of lymphodema, and saw my doctor. He said it wasn't bad, just to put it up in the evenings. Worry when one leg is three times the size of the other!!! And if you press it and a dent stays there, go back to him.

I then asked the consultant at my check up, who said it wasn't lymphodema! She didn't seem to know much about it. I also asked my CNS, who said it was important to get it sorted, but then never looked at it, and turned to talk to someone else!! I then saw the nurse at my doctors surgery and asked her. She said it was not bad and not to worry, so since then, I have stopped thinking about it. And if it gets worse I'll go back to my doctor!!! I tend to study ankles since then, and there are a lot worse than mine!!!  

I believe you have it massaged, and have to careful of cuts. I scratched my leg in the garden the other day, but nothing disastrous happened!! I think it may depend how bad the lymphodema is. 

The swelling couldn't be a bite of some sort? Having had my first wasp bite at the age of 71, I now know how painful they are!! And my husband swells up like a balloon when he gets one. xxxxx

Hi Squigglyline,

I understand that Lymphoedema can make an appearance at any time after lymph node removal or RT treatment . Some years after treatment I noticed a slightly puffy area at the top of my inner thigh.  I know that the oncology clinics are always very busy so when I spotted a vacant appointment slot at my GP (Hurrah!) I grabbed at it.   The Doctor measured me, was unsure about the significance but referred me to the local Lymphoedema Clinic anyway.  

  It turned out the clinic was only seeing cancer patients and I got an appointment quickly.  There the nurse measured both my legs all at intervals all the way up, did some calculations  and said there was enough of a difference in the volume of my two legs to justify taking precautions as lymphoedema can be managed  and controlled if caught early.  

Real lymphatic massage is quite specialised and must not be undertaken without the right knowledge and instruction.  The nurse told me that one could stroke one's legs very gently in an upward direction  - just lightly moving the skin with no pressure at all.

 Weight control , gentle exercise, keeping the legs raised where possible, taking great care of the skin, watching for any sign of infection and wearing compression hosiery were the general recommendations.   I have been given compression tights and although I don't really like the idea the alternative is worse!  As I have varicose veins anyway the tights do help with that problem as well. . 

At my next visit to the Oncology clinic I told them about my visit to the local Lymphoedema Clinic and they were glad I had gone down that route as the Hospital Clinic had a very long wait for appointments. 

Hopefully your Mum's symptoms are temporary but do keep vigilant and nag for referral if you are worried.

I had the same fear but my GP ruled out Lymphoedema as there was no “pitting” when she pressed the skin. I’ve had a second scan but it’s all ok. Fear really can get hold of you

Hi Squigglyline,

I've had another thought!! She hasn't changed medication recently? A few years ago (before I was diagnosed) the doctor increased my blood pressure tablets. Both my legs swelled up so much that I couldn't bend my knees!! They went down overnight once I stopped the tablets and switched to a different make.   xxxxxx

Thanks all. NannyAnny, she's not on medication of any sort.if she presses neat her ankle a slight dent does remain for a few seconds so sounds like lymphodema. The nurses just didn't seem to know much or to think that's what it was. She has her first post treatment app with consultant next week so she will be asking him. Its not much swollen, if you saw the one leg on its own you wouldn't notice but beside her other leg you can tell..

Galanthophile if not lymphodema did they say what it was? Can you have random undiagnosed swelling?

GP didn’t think it was anything to be concerned about but if combined with other symptoms it could be. I’ve stopped Googling!