Lymphoedema anyone?

Hi not sure if I have spelt that right! Just wondered if anyone else has had this or carried fluid in limbs after surgery? I have had fluid in my left leg and foot for 4 weeks now, been to gp, been checked for dvt all ok. Now put on a diuretic for a week but day 4 and no difference. This morning out of the blue m csn phoned up to see how I am after finishing treatment and I mentioned it to her. She said it could have been caused by the removal of lymph glands during my hysterectomy last Aug, its not uncommon. If it doesn't clear up she said to phone her and she will get me referred to the specialist clinic. Just read up about it and feel quite fed up as its termed as a chronic long term illness! Also asked her when my next appointment is for a review, got the all clear three weeks ago. She said it has not been made yet but in a letter the onco said he would see me in 6 months time! So asked her to check on that as I was told it would be every three months alternating between the onco and the surgeon, no appointment has been made to see either of them! Hope everyone is keeping well. xx

14 Replies

  • insist Chris x

  • see earlier...insist insist! love Chrisxx

  • Yes Triplets!

    Agree with Chris, insist! It should really be every 3 months for a couple of years and then onto 6 months after that! That's what I was told and have had so far, alternating between Gynae/Onc and Med/Onc. I have my second one this year tomorrow but the last one I had in Jan with the Med/Onc he signed me off to be seen every 6 months by the Gynae Onc from now on but I did have a year of 3 monthlies so I would defo push for that! Just for peace of mind as well as everything else!

    Hope the leg clears up!


  • Thanks I will, don't think she seemed very with it, felt I knew more than her! She also told me she is retiring in June, told them 5 months ago and so far no replacement! x

  • yes.....they are keen on watch and wait but am not sure they always know what they are watching or waiting for(!) xxx

  • I have a a slightly larger left side since my surgery Nov 2015, my foot and leg is always a little puffier now, I had four lymph nodes removed. I haven't had any treatment but it is worse after flying.

    I did see gynae every six months and then when recurred now see oncologist every 8 weeks and gynae every 8 weeks, so it works out every four weeks I have an appointment lol. Wish I was back to 12 weeks at least.

    LA xx

  • Yes I also have lymph nodes removed,my lower legs and feet tend to swell when I make car journeys,or I'am on my legs too much especially in the evenings, take time to rest and put your legs up and most importantly make sure that you use a moisturising cream on your legs and feet every day. My legs were much worse in the first 2 years after my treatment and now they're more or less back to normal, unless I overdo it. This condition can be reversed if it's in the first stages.Good luck xx

  • Thank you Keepon I don't feel quite so alone now........felt very fed up all day worrying about it. I only had my all clear 3 weeks ago and just wanted time away from hospitals, not more appointments! Its been like it for 4 weeks now, just wondering why its all playing up now when I had the surgery almost 8 months ago. Thank you. x

  • I think it is common if they remove the lymph glands in the groin area.

  • Hi

    I would definately push for a referral to see a specialist lymphedema nurse . Haven't had yet myself only 4 months since surgery but my mum has had problems due to her heart condition and is on diretics . Seeing the specialist nurse made all the difference . Very important to stop it progressing . Elevating legs but need to be higher than heart , moisturising legs and feet and wearing support stockings ( but have to be specially measured ) can all make a real difference so would definately get advice early . Best wishes Kim X

  • I have Lymphadoema or as my friend calls in Nymphadema (not the same thing at all!) It was really bad last year, couldn't get shoes on and had ankles like balloons. Have since elevated foot of the bed with a wedge of foam between mattress and bed bottom. I occasionally wear the stockings but the legs are so much better haven't had to. Walking and then sitting with legs up seems to make it manageable. I go to the Lymphadoema clinic every 3 months and they are very helpful. Can't remember who referred me, think it was the palliative care nurses.

  • Makes for interesting reading ladies. I have put up with this for nearly 10 years. I no longer wear skirts because of my swollen ankles (cankles) and legs. I have to say I never had slim legs but now they are awful. Maykbe I should push for an appointment.....

  • Has anyone recommended lymphatic drainage massage from a specialist nurse? Look up lymphatic drainage on the Macmillan site. I have a friend ( in Australia) who has regular massage treatment on her arm for removal of lymph nodes following breast cancer and finds it medically very therapeutic and symptom relieving (but not curing.

    I have another friend ( in Canada ) who trained to do this type of massage and has a lot of satisfied customers !

    I hope you get some satisfaction and relief from symptoms.... Janet 🌈

  • Thank your for all your replies. Apparently there is at least a 3 month waiting list to see the specialist nurse, it was 6!! I have read about massage being good, I am just hoping in the mean time to try and control it myself, been reading about what to eat and drink to help it etc. Seems strange its happened 8 months after surgery. Walked into town today, a brisk 40 min walk, had to stop a couple of times as the leg ached, it usually takes 35 mins so not a bad time with a gammy leg! x

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