Experience of early/mild lymphoedema

Hi Louise

I’m going to tag Beth2 in the hope that she’ll come on with advice, as I know she’s got a lot of knowledge from her own experience of dealing with this. 

I had multiple lymph nodes removed during my own surgery, but haven’t experienced any lymphoedema in the following years, so unfortunately can’t help with this. I can understand you’ll be concerned, so hope you’ll get replies here and in the lymphoedema group. 

Sarah xx

Thanks SarahH21  - much appreciated x

Hi L2025 

I noticed light swelling in my right ankle a couple of months after surgery. It would come and go but got worse over time. Warmer weather seems to make mine worse. As soon as I noticed it, my surgeon said he would refer me to the Lymphoedema clinic. Unfortunately my referral did not get sent due to staff issues so months were wasted! When I realised, I asked my GP to do the referral instead and then I waited a couple of months (I think) to be seen. By that point (about 6 months after surgery) my foot and ankle was sore and huge and I could not put my trainer on! 
I was seen by a lymphoedema nurse at a local cancer centre. The clinic is an NHS one. They measured all parts of my legs and used a scanner to see the levels. I was given special stockings to wear which help and I have found ways to reduce swelling in other ways too. Keeping cool, keeping active, avoiding strappy sandals that dig in and wearing stockings for a few hours in the evening helps. Drinking more water helps too. I should wear the stockings more but they don’t work with flip flops etc! My ankle swelling definitely reduces in the winter. The nurse measured me last winter and my leg, foot and ankle were within normal levels, however as soon as Spring came it became swollen again. As much as I dislike the stockings, they give me some relief and make it look less obvious! 
You should be able to ask for a referral to a Lymphoedema clinic rather than have to wait. It can take a while to be seenx

Hi May2 

Thanks so much for replying and sharing your experience - really useful. Sorry to hear about your lymphoedema but glad that you find the stockings and other methods help with swelling. I have a GP appointment in a couple of weeks to review my HRT prescription so I think I’ll ask about the lymphoedema clinic then to get myself in the queue to be seen. 

Louise x

Hi  L2025

My lymphoedema started in my right groin and right lower abdomen very shortly after completion of treatment.  The swelling was minimal but I experienced discomfort and aching, a bit like a pulled muscle in my groin.  Over the following weeks the swelling gradually spread down my right thigh and didn't really ever subside.  We're all different and not everyone's lymphoedema (post cc treatment) will start or behave exactly like this.  However imo unilateral swelling (it can be bilateral), persistent or intermittent, is highly indicative of lymphoedema and ideally I would want input from a specialist at a lymphoedema clinic asap.  In my experience GPs (and oncologists) may not well informed about lymphoedema and you may need to self advocate for a referral e.g. seek a second opinion.

Within a month or two from the start of symptoms I saw my GP who measured the circumference of both legs at various points.  She noted my right thigh was indeed bigger than my left and referred me to a lymphoedema clinic.  The waiting list for the clinic was 4 months (in 2017)but I managed to get a cancellation appointment at 3 months.

In the meantime I suggest following the tips given in the LSN article 'just diagnosed'.  I would also add in elevating the affected leg as much as possible to help drain excess lymph fluid.  Although you're not diagnosed as such following these tips may help and shouldn't do any harm  : www.lymphoedema.org/.../

I've managed to keep my swelling stable since 2019, when after several clinic appointments and much trial and error, I got a compression stocking which fitted well and was comfortable to wear.  I wear a custom made flat knit stocking which is much more effective for me than the round knit off-the-shelf type.  I wear my stocking from when I get up in the morning to when I go to bed; also compression toe caps as my lymphoedema eventually spread throughout my entire leg plus foot!  I'm very diligent about skin care especially daily moisturising and prompt treatment of any wounds, bites and so far have been fortunate not to have had cellulitis. 

You may already be aware: the Lymphoedema Support Network (as referenced above) and Lymphoedema United are great for reliable advice and information.

If you have any questions I'm happy to try and help.

Hi Beth2 

Many thanks for the detail in your reply, the tips link and the names of organisations to look up - all really helpful. Glad to hear that you’ve been able to keep the swelling stable for so long.

Looks like I’m going to need to get better at self advocating to get a referral for the lymphoedema clinic. The swelling that had finally gone down after a month which I mentioned in my original post only stayed down for 2 days before becoming swollen again.

Louise

Hi L2025

If required the Lymphoedema Support Network can offer guidance about accessing clinics (NHS and private)  Call or email:  https://www.lymphoedema.org/