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Supermicrosurgery for Lymphoedema

Member

Re: Supermicrosurgery for Lymphoedema

I think this is a very exciting development and follow up studies of this type of surgery carried out in Italy are showing very positive results - even 10 years down the line!

The main issue is that of funding. I think most people who get this will be paying for it privately. If you think about it, terrible as lymphoedema is for those of us suffering from it, getting four compression sleeves a year on the NHS is dirt cheap - about £200 per year. I believe the surgery is about £10,000 per arm and that doesn't include pre and post surgery follow up so it would take 50 years of conventional treatment to match the cost! Mmm, how likely is it the NHS will fund it?
The main issue is that no-one speaks up for those actually diagnosed with lymphoedema not even, I'm very sad to say, Breast Cancer Care. Everything is always about reducing the risk of developing it.

We need someone or some high profile organisation to start campaigning to let the world know about lymphoedema and how it effects our lives. Very few health professionals even understand lymphoedema so even with GPs commissioning services it's unlikely to be the top of anyone's agenda.

Apologies for the rant. But, yes, it does give us hope and I'm hoping that one day I'll be able to afford to get it done.

Elinda x
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Member

Re: Supermicrosurgery for Lymphoedema

How wonderful that there will be hope of successful treatment. It may not be rolled out fast enough to benefit me but there is now HOPE. The absolute worst thing about my diagnosis was that it could be treated but not cured! I was so depressed at that point and found so little information which was positive and so few professionals who were concerned about the plight of patients facing a lifetime of pain & awkwardness. This is not to decry the therapists who have helped me, thank God for for them, but concern about those people like me who have been damaged by cancer treatment.
Member

Re: Supermicrosurgery for Lymphoedema

I've only just noticed this thread, and I always check "latest posts", but not always the new ones that hadn't had replies. Not sure how I missed it, but I think this is really exciting, as up til now the literature always reads "no cure" for lymphedema!

The only thing I wonder is what the criteria will be, and how accessible it might be, being very specialized surgery. I can't think it is going to be widely available any time soon, ..... if ever?

Fascinating stuff though! Thanks for posting.
Member

Re: Supermicrosurgery for Lymphoedema

Dear Jill
I am surprised that my original post attracted so little interest!
I hope your appointment yesterday went well; I would be very interested to hear what your lymphodema specialist had to say about supermicrosurgery.
I hope you are not suffering too much.
Phyllida
Member

Re: Supermicrosurgery for Lymphoedema

Thanks Phyllida Iam suffering from lymhoedema waiting to see someone on the 15th about it. It was one of my main concerns because I have my own small embroidery business and its now affecting it so hopfully can get some positive results,will mention this and see if any progress is being made think we are suffering enough without this affecting the rest of our lives
Jill
Member

Re: Supermicrosurgery for Lymphoedema

I have lymphedema and its been a real pain. Sleeves are uncomfortable and pressure pump does not work so well. Wrapping works but so hard to do yourself 1 Does anyone answering this please let me know your possitive remarks on how to deal with this. Clothes are hard to buy etc. Thanks, Rainbows
Member

Supermicrosurgery for Lymphoedema

Hi Everyone

I rarely post but have found this forum invaluable during the course of my recent treatment. I was diagnosed in February 2012 with Grade III, HER2+++, PR and ER 8/8 and had neo adjuvant chemotherapy (x 8) followed by WLE, ANC and radiotherapy + Herceptin and now on Tamoxifen.
The risk of lymphoedema has caused me more anxiety than anything else and it took me months to come to terms with this. I am therefore always interested in new developments in treatment for those who suffer and came across the following this morning:
http://www.ouh.nhs.uk/services/departments/lymphoedema/default.aspx

It gladens the heart to know that pioneering new surgery is taking place and I hope that this might be of interest to someone.

Phyllida