Seems like I'm developing Lymphoedema!

Hi Barb,

Sorry to hear you think you may have lymphoedema.  I think there can be other causes of swelling in the lower limbs and I do wonder whether it is worth speaking to your GP.   it is so easy, particularly in the first few years after treatment to think about side effects and neglect other possible causes.   

I did have a similar experience - I didn't have any lymph nodes removed but I had 25 sessions of external pelvic radiotherapy which carries a similar risk for lymphoedema as it wrecks the nodes.  After about 3 years I noticed a puffy area at the top of one thigh which made me suspicious.  I wasn't due for a checkup for months and I had little contact with a CNS so I spoke to my GP.  She checked my legs and was unsure but felt it was worth referring me to the local lymphoedema service. .  I got an appointment quite quickly because they were only seeing cancer patients.   The nurse felt I could be at a very early stage,  I was given advice about leg care and advised to wear compression hosiery as she said that control was easier at an early stage,   When my oncologist checkup did come round they were pleased to hear that I had taken action as the Hospital clinic had a very long waiting list for the condition. 

PS: Compression hosiery isn't fun but if it helps it's worth it!.    

Hi Barb,

I also think I have this. Mine started about 3 months after my operation. I asked 4 medical people at the time about it, and they all said it wasn't bad. Like you, I've to keep my eye on it. My ankle goes down overnight, but is back up by evening. I intend to ask about it again  at my annual check up in August. I'm also on thyroxine.

HI Barb,

Sorry to hear you've had some swelling appear - I've always thought with your walking that this would help keep lymphoedema at bay (I've not been so good at getting out recently - too much time at work in front of a computer - but do yoga several times a week). Let's hope this is an isolated occurrence and that monitoring is all it will need.

Take good care of yourself, thikning of you.
Dx

Hi all.

Thanks for the support. Golly the idea of wearing the dreaded "Teds" stocking is awful, especially in summer (mind it's so cold not a bad idea at the 'mo!)

My CNS said they arrange for me to go to the clinic immediately if necessary but like NannyAnny it goes down overnight and is up by evening. It's not painful and I don't feel it when walking (still doing 5 miles a day) but if I wear different boots I'm aware of it. God I'd hate to give up walking!

I suppose it'l give me an excuse to go out and get some new shoes - pity I really like the sandals!

Hugs all round, Barb xx 

Hi Barb,

Interesting that yours goes down overnight, too. I can't see anything about that anywhere!!! I have a friend whose husband has it, and he says if you press the skin and it bounces back up its fine. When you press it and you still have the indentation, then that is  bad .That's called pitted oedema. His leg is very bad, but he has had a heart bypass in the past.

Its only this year I've had aching sometimes. But, is that age? I can't expect to walk like I did at 16 when I am 76!!! My shoes aren't affected. I did have swelling in both legs when I was on Amlodipine for blood pressure before my operation. The doctor changed me to Lercanidipine, and the swelling went down overnight. At the time I thought my bleed was connected, as it happened soon after the change in tablets.xx

Good to know - so far the skin is bouncing back out!

Bx

Hi Barb. That sounds good the skin isn't pitting. I developed lymphedema after my first pregnancy and have been wearing compression hosiery for years and it does help. Am on thick made to measure class  3 garments in a fetching beige colour but I find wearing them even in summer isn't too bad and saves my legs from feeling like ten ton weights at the end of the day. I was advised not to wear shoes or boots with a cross bar and told off for wearing sandals as they were not supportive enough. As others have advised I would refer it to your gp as there are other reasons for swelling, particularly if it is only in one limb. Hopefully it is nothing serious though. Sending love and prayers your way. Take care. Love Lamb.xx

I had lymph nodes removed with the hysterectomy and noticed quite soon after that my ankles were swelling so my GP put me on Furosemide (water tablets). They helped a bit but at one of my clinic appointments 2 years later I mentioned it again and they referred me to the Lymphoedema clinic. She said GP’s always get it wrong and prescribe water tablets.. I’m now wearing the compression stockings which do help. Very difficult to find comfortable shoes. I wouldn’t dream of wearing sandals though.

Sod's Law when I saw my consultant on 22nd (did I mention he's lovely!) my foot was hardly swollen at all. He did mention he'd give me teds if necessary or refer me to the clinic. It stayed normal for a few days and swelled up over the weekend so I'm keeping an eye on it.

Barb xx