lymphedema

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Does anyone have lymphedema after cancer? I had my lymph nodes removed last year and now seem to have lymphedema but any advice that you've been told or how it's effected you? 

I feel let down by my GP as they won't listen to me about it. 

Any advice would be nice 

  • Hi 

    One of our ladies has a lot of experience and put lots of really useful information in one of the threads recently about diagnosis and treatment of lymphoedema. Let me have a look and I’ll see if I can find it.

    Sarah xx


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  • The thread is called “Excessive Bleeding” and was from a couple of weeks ago. It started off about bleeding but then we got into a discussion about lymphoedema, and there is loads of information from  which is really good to know. I tried to put in a link but for some reason it’s not working! I’ll keep trying!

    Sarah xx


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  • Hi Peace73

    Reference your message to me in the 'Excessive bleeding' discussion

    You are correct that water tablets are not the correct treatment for lymphoedema. I'm not an expert but there can be a number of reasons for leg/foot swelling and I guess it's not unreasonable that your doctor may wish to rule out certain conditions before referring you to a lymphoedema clinic.  The blood test results shouldn't take too long to come through so hopefully won't cause too much of a delay. 

    I can totally empathise with your concern about getting the correct treatment - the sooner the better if it is lymphoedema. I first noticed my symptoms May 2017, and it wasn't until 4 months later that I got an appointment at a lymphoedema clinic during which time I worried constantly about my swelling getting worse.

    If you are not happy with the way your GP is dealing with your swelling you could get a second opinion with another GP at your surgery. My lymphoedema started in my groin/upper thigh and the first GP I saw fobbed me off with a diagnosis of a pulled muscle! Luckily the second GP I saw was better informed about lymphoedema; took on board I was post cancer treatment and therefore at risk, measured the circumference of my legs and noted one was larger than the other and referred me to a lymphoedema clinic.

    There are private options for getting a lymphoedema diagnosis and treatment which includes an assessment with an ICG lymphography scan, bespoke lymphatic drainage massage and microsurgery. These are very expensive but if you are interested see Professor Dominic Furniss and Jane Wigg on the following link: https://lymphoedemaunited.com/meet-the-experts/

    Compression garments, worn on a daily basis, are the arguably the most effective way of managing lymphoedema. It's very important they fit well so as to provide a gradient of compression which is higher distally (foot/ankle) than proximally (thigh/abdomen) in order to help move the lymph fluid towards the heart. They should ideally be measured for and prescribed by a trained specialist. Incorrectly fitting compression garments can do more harm than good.

    In the meantime there are some some simple things you can do which should help if you have lymphoedema and won't do any harm if you don't:

    Skin care: lymphoedema increases the risk of cellulitis so it's important to maintain skin integrity to reduce the risk of bacteria entering and causing infection. Treat insect bites, cuts and grazes in the affected area with an antispetic and cover if the skin is broken. Avoid sunburn. Moisturise the affected area daily with a perfume and parabens (aka hydroxybenzoate) free cream such as Aveeno or Epimax Original.

    Movement is beneficial as it helps to keep the lymph moving. Walking and swimming are often recommended but anything you enjoy because you are more likely to do it. Exercises such as rotating the ankles, heel raises and cycling your legs in the air (if possible) are helpful. Intense exercise may increase lymphoedema swelling - the effects may not be apparent until the day after.

    Elevate the affected area whenever you can and avoid standing still.

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

    I was diagnosed with stage 2A squamous cell cervical cancer (node negative) in 2017 following symptoms: persistent, watery, yellow vaginal discharge then post-menopuasal bleeding.  My treatment was a radical hysterectomy followed by chemo-radiotherapy.  My long term side effects include lymphoedema and urinary retention which I manage with intermittent self catheterisation.
  • Hi 

    Thanks again for all your help with this topic. I’m sure   will be able to take a lot from your great advice and all you have learned in your own dealings with this. 

    Sarah xx


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  • Thanks beth2 

    I'll let you know if I need more advice or help