Lymphedema 5 years after treatment

Hi xxHHxx 

I know that one of our ladies has a lot of experience and personal knowledge of lymphodoema, so I’m going to tag her in so that she can reply.Beth2 

I’m wondering what the plan is going forward? It’s good that the ultrasound hasn’t identified any clots, but will your consultant order other scans or a referral to a lymphodoema clinic? 

Sarah xx

Hi, thank you,

I am going back for another ultrasound on Friday, just to make sure.

My consultant has ordered a CT, no appointment date as yet. I think she will await the results of that scan before taking any action as she wants to rule out recurrance for the cause of my leg swelling. 

It's just so long since my treatment, it's concerning. 

Oh xxHHxx i really hope recurrence can be ruled out. I’ve got experience of clots, but not lymphodoema-I had a pulmonary embolism caused by my chemo during treatment, and then last year I had a stroke-unconnected with my cancer. Both times they showed up on CT scans done on the day each “event” happened. 

I can understand your consultant wanting a CT done, but really hope there’s no recurrence found after being out of treatment for so long. 

Sarah xx

Oh my, you have had to deal with a lot, I hope you are recovering well?

Yes, I do hope it's not recurrance, I have been through this before in 2023 into 2024 where they thought it had returned. 

It really doesn't end when treatment is over 

I had a recurrence only 9 months after my chemoradiation finished. I did have an NED result  3 months after treatment ended, and had no symptoms so it was a big shock. 

I’m doing ok now thank you, but in that last couple of years I’ve had a lot of different medical issues to deal with and had another surgery, but luckily nothing related to my cancer. But I’ve had so many tests and procedures it seems endless, and there’s always been the worry of the cancer being back. 

Sarah xx

Hi xxHHxx ,

I am only just over a year post op.  I just wanted to say that I have Lymphoedema (started about 5 months after my op) in my right leg (particularly ankle) which flares up for different reasons and then calms down. It swells during the day and improves over night. Things that seem to make it worse are heat, wearing certain boots, strappy sandals, certain socks and if I haven’t moved as much (especially when working at my desk). Have you been wearing or doing anything different?
I hope all is ok and you find out soon what is going onx

Hi xxHHxx

I developed lymphoedema in one leg shortly after completing my treatment in 2017.  The other leg still looks and feels normal but I was advised there is a lifetime risk it may also develop lymphoedema.  So yes it is certainly possible to get lymphoedema 5 years post cc treatment.

Lymphoedema is a progessive disease (worse for some than others) so, if turns out that's what you have, the sooner you can get treatment the better your chances for a good long term outcome.  Ask your oncology team or GP for a referral to a lymphoedema clinic.  In my experience not all oncology teams or GPs are very helpful with lymphoedema plus NHS lymphoedema service are a postcode lottery.  If you encounter problems accessing a clinic I recommend contacting (call or e mail) the Lymphoedema Support Network for guidance: www.lymphoedema.org