Secondary lymphoedema following prostate surgery and radiotherapy

Hi Paul/HappyPixel 

I haven't suffered with lymphoedema but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

You might also want to post this in the prostate cancer forum, which I can see you're a member of.

I hope your condition improves soon

Hi there,

I’m really sorry to hear about your journey - it’s clearly been a very difficult time.

My lymphoedema is ongoing and I am very fortunate to have a good support network within our amazing NHS. 

I hope you are doing a bit better?

 I don’t always get time to read the forum posts, so apologies for not responding sooner.

Take care,

Mrs D 

I had robotic surgery to remove the prostate and several lymph nodes in my right abdomen in late October of 2022.  This was immediately followed by severe complications due to fluid buildup in the lower right abdominal cavity and an internal infection.  I was in and out of hospital for all of November and December, remaining an outpatient for another few months.  
since then, I’ve experienced increasing difficulty with lymphedema in my right leg and abdomen.  

I gather you were told this is fairly unusual but, oddly enough, I was told quite the opposite;  That it happens in 15-20% of prostate cancer surgeries.   My infection was unusual but the lymphadema, not so much evidently.  

I’m still fairly active and have found exercise to be the only thing that brings relief.   As I write this, I’m half way through an 18 hour train journey after a relatively sedentary week at a conference.  My right leg is twice the size of my left.  

I find it extremely disappointing that the medical community has yet to come up with a reasonable and practical solution for this all too common post-operative problem.  

There!

I got that off my chest!  Hoping this starts a conversation and a worthwhile exchange!