Secondary lymphoedema following prostate surgery and radiotherapy

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Hi

I had a radical open prostatectomy in Feb 2023, (43 lymph nodes removed) followed by 37 fractions of Radiotherapy starting in October 2023. I now have lymphoedema in my right leg (mainly - some in the left leg too).

What I’m after is other people’s experience on this. I was told it was quite rare to get it in this way, but the more people I talk to, the more common it seems to be.

So what are others’ experience? Have you experienced this under these conditions? What treatment / management do you need? Have you noticed any improvement or deterioration in your condition? I’m struggling to find people who have experience of more than a year or so of this  

Many thanks

Paul

  • Hi Paul/ 

    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

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • 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 

  • That’s a really kind reply. It’s so good that you were able to empathise, despite not living with lymphoedema. We’re all living with the consequences of cancer and related conditions.

    Take care,

    Mrs D