My Lymphoedema Story - Right leg following surgery and radiotherapy

Hi, I have secondary lymphoedema in my right leg. It came on following surgery and radiotherapy to remove a tumour from my thigh. The radiotherapy is the cause and although I've not had any Lymph nodes removed, the damage that the radiation has done has left me with this condition.

Thankfully the cancer has been dealt with but it wasn't until after I noticed the swelling that I had even been made aware what Lymphoedema was or that I might get it as a result of the treatment.. (obviously I would still have gone ahead with the radiotherapy, but it would have been nice to be forewarned of what might follow).

I think there needs to be as much focus as possible on increasing awareness of this condition as it is not something that seems to get a lot of coverage and accessing medical professionals who understand it, in both NHS and Private Clinics is not easy.

I have had lots of experience with Physio's, Lympotouch, Hivamat, MLD Therapists etc etc. and although they have their benefits, the one thing that has made the biggest difference is getting to see a fantastic Lympoedema nurse on the NHS who has been able to provide an intense course and ongoing treatment with Coban2 alongside using well fitted compression garments on a daily basis.

I've managed to get the size of my leg almost back to normal and although I still have to maintain the compression and get some pain in the leg, I have regained around 90% of the full movement and have adapted my life to suit.

I'd be happy to hear from anyone who has had any similar experiences or would like to discuss anything further.

4 Replies

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  • Hi, I was really interested to read your story. I too had a tumour, sarcoma, removed from my tigh muscle last June. I then had 6 weeks of radio therapy treatment over Aug/ Sept . I recovered well after the operation, but since the r.ther I have taken a step backwards. I get swelling around the knee every day, and the range of movement- bending is not good. It does not stop me doing most things but I feel discomfort walking and going up and down the stair.

    I see the Dr every 3 months and they are aware of the swelling but I have not been recommended any treatment apart for. Physio. At the physio stretching exercises were prescribed but I don't thi k they are going to improve the situation until the swelling is gone.

    How did you get referred and is it available every where? I live in Dundee.

    Thanks, it would be great to hear from you.

    Suzanne

  • hi I have developed lymphoedema in both legs since having lymph nodes removed and thankfully my consultant has refered me to a clinic that specialises in this so have a word with yours or badger your g p best of luck

  • Thanks, since posting last, I have seen the lymphedema nurse and now wear a support stocking on my leg daily. It is a grade one and I have noticed an improvement. It's been nearly 3 months now and I go back in a few weeks, I am hoping to get a grade 2 that will give me even better results.

  • that's encouraging for you I haven't seen anyone yet am still waiting for the appointment to come

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