Lymphadema

[EilyEire]

Been to AnE to day right leg swollen and sore ,no clot tg think it lymphedema ,any of ye gang have this, always something. any advice hey, xx

[HogwartsDK]

Hey E!

Sorry you had to go to A&E have no direct advice just hope you feel better soon!! I am sure some of the others will have some wise words for you though! 

Dx

[KKKKatie]

My sister has it one leg, aftertests the conc was that the lymph nodes had been damaged in debulking surgery 3yrs earlier and this was  the cause.  Her tumour fortunately was border line so there was no need for any treatment.  She is very well and manages the lymphedemia well. Excellent support from lymphedema nurses.

[willyjan1]

I have had swelling for years. In my left leg first, then it  went to my right leg.  I am on water pills, and they still stay swelled. I have neuropathy to.

[Gina555]

Hi there, you could try ringing the Lymphoedema Support Network (LSN) who give good support and advice. All the best, Gina

[Barlow1951]

My right leg suddenly swelled up after my second chemo in January and I was found to have a seroma in my right groin. A seroma is a cyst containing fluid which is a common thing following major abdominal surgery and often disappears spontaneously as the fluid is re absorbed. Within a fortnight my leg was back to normal so I thought the seroma had gone. Unfortunately it swelled again after chemo 4 and I ended up having it drained because doctors thought it might be source of infection which had made my temp spike and put me in hospital again. Yours may well be lymphodaema but I would advise you to contact your oncologist to see what they think as they need to know about new symptoms following chemo.

Do hope you will soon find out what has caused the swelling and get some effective treatment.

Best wishes,

Barbara 

[Hidden]

Sorry you had to go to A and E.  I dont have any experience with lymphodema so I am sorry I cant be of any great help.   Did they recommend anything for you?

[EilyEire]

Thanks ladies for the replies. x

[maggie11]

Hi EilyEire, if you can afford it I would look for a therapist who can give you lymphodema massage a couple of times a week as long as your doctors are happy with it.  If you find a really good therapist chances are they can clear it for you but it needs to be someone properly trained in lymphodema not a massage therapist who has trained in lymph drainage massage.  You need the real thing. 

\hope you manage to find someone who can help you. 

[kb68]

I too went to hospital with a swollen leg thinking it was a dvt but turned out to be lymphoedema. It appears to be quite a common side effect of them tampering with your lymph nodes, don't  remember anyone mentioning it to me before all my interventions but it wouldn't have changed the outcome if they had.

I now attend a lymphoedema clinic where I was assessed by a physio and given prescribed compression stockings/tights (2 pairs every six months on the nhs), advised to do some self massage, maintain good skin care and exercise to keep the swelling under control. (Oh and try and lose some weight!) 

The information I was given was that once you had it lymphoedema was a permanent condition but that it could be controlled and reduced by the above. I am still going to the lymphoedema clinic every six months for monitoring and measuring (be prepared to have your legs measured from foot to top of thigh every five cm!) But I think once it stabilises they will discharge me, I am not a very good patient and don't wear the stocking enough so my leg goes up and down a bit!

When I was first told it felt a bit like the straw that broke the camel's back. But I have now got used to it. Though it does suck a bit - as if having the cancer wasn't quite enough to put up with! 

As somebody else said there is info on the lymphoedema support network website and other info around on the internet, it is also quite common in women with breast cancer who  get it in their arms. 

Hope that helps

K

[Whippit]

Hi EllyEire

I developed Lymphoedema in December and was advised to go along to A&E to check it wasn't a DVT which it wasn't at the time. Lymphoedema wasn't caused by surgery in my case but by tumours pressing on the lymph nodes in the groin. 

I would say ask if you need a referral to a lymphoedema specialist and keep a regular check on it. My leg became very swollen and I was measured up for a garment which I put on each morning till bed time and this stops any more fluid being retained in the leg and helps to drain the fluid. They will give you exercises to manage it. Regular walking or swimming helps if you can do those. 

I was advised that lymphatic drainage wouldn't be suitable but in my case the fluid needs to drain gradually. Drink plenty of water. I hadn't realised the importance of that advice but you will need plenty of fluids to help drain the leg. 

Somewhere along the line I developed a DVT in my groin. This is being treated with daily injections. Now that seems to be sorted out I just have to concentrate on managing the lymphoedema and I really don't find it too much of a problem. 

Let us know how you get on. xxx love Annie