Welcome James. I'm in a similar situation as you and also in the UK. Diagnosed last year.

My GP and local hand unit at the hospital both said to come back when I had a finger contraction, so that surgery could be performed, including the possibility of NA. Naturally I was not pleased with this.

Since then the collagenase injection, Xiapex in the UK, has been approved by NICE for treatment of a contraction with cord.

Also since my diagnosis, radiotherapy had been approved by NICE so in theory is available on the NHS. Radiotherapy has been shown to have the best results when done early and the condition is active. I am aware of one patient having it done on the NHS in East Anglia. In my own case although I found a radiotherapist at the local hospital to do the treatment, the Primary Care Trust were not willing to fund it until more informaton had been gathered and procedures set in place. This was at the end of last year and early this year. Feeling I had a battle on my hands (!) I had it done privately abroad this year.

Happily things seem to be changing and there's are now several clinics listed in the UK on this web site, under Treatments -> Radiotherapy -> Clinics, who are offering radiotherapy as treatment, private and NHS. So if you have growth of nodules, soreness, tingling, aching, indications that the disease is active then radiotherapy is a good option to consider in the hope of stopping the disease. There are lots of patient experiences on this site and some literature about the treatment so read up and go back fully armed to your GP.

Link to the NICE guidance http://www.nice.org.uk/guidance/IPG368

Best wishes

Edited 07/01/11 11:03

Hi,

I just finished having my Radiotherapy treatment for the Dupuytrens. It works very well. I have already noticed the improvement in my fingers and more over it is non-invase aswell. In case if this fails I can always have my surgery again.
The clinic I had treatment is in Wimbledon itself so I was lucky to have found this. The name of the clinic is CCL and her is the link for it http://www.cancercentrelondon.co.uk/

Matt

spanishbuddha:

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Thanks for the feedback Matt. Did you find the clinic through the listings on this site? Was it private or NHS? Best wishes with the outcome from the treatment.

In my own case with the Dupuytren's my treatment was delayed by more than 6 months due to a failure to diagnose my condition on the part of my physician at the time, Dr. Dawn Motyka. The effectiveness of the XRT was reduced by this delay as it seems to arrest rather than reverse the disease in most situations where there is contracture (which signals significant progression).

I ended up flying from California to Essen, Germany to see and be diagnosed and treated by Dr. Seegenschmiedt. In 2007 the first round of treatments cost me 400 Euros plus my travel expense. I would not hesitate to do this again as he has the most experience and medical care seems to be better and certainly a lot less expensive than in the USA where the second round of treatments in California cost over USD 8,000 for the same treatment.

From the UK I would probably travel by train to Essen but I would still go to see Dr. Seegenschmiedt as no one has as much experience in treating Dupuytren's with XRT.

Welcome back James

I too have had difficulty getting my local PCT to perform RT, in this case they quoted costs and sent me a form to appeal.

There are several clinics in the UK now listed on the Treatments page that are doing RT. You could contact them and see if they will do it on NHS and if so ask for a referral from your GP. I know of at least one hospital, not listed, that has done it on the NHS.

The Professor in Germany told me that because the RT was done on an extremity, away from major organs, because he was using electron beams so very narrow and focussed without scatter, and ahem because I was in my 'senior' years the risk of having any cancer type side effect was not worth worrying about. He tried to give an example by saying, well you chose to fly here, took a train and crossed the road. The statistics for that are far more worrying. I don't know if there are any figures published for this, maybe someone else will chime in. The energy being used is very low with minimal tissue penetration and they do have experience of the risks of secondary cancers using RT more aggressively for treatment of cancer (prostate, brain, lung, etc).

RT is being performed for DD in several countries. The US, France, Germany, Australia are just the ones we know about from the Forum.

Feedback on the forum from most people who have had RT in the early and active stages are that over 1-2 years nodules soften and even shrink. But most importantly they don't progress and the disease goes from being active with many symptoms to dormant with no progression. There are a few cases reported here where the disease has recurred although it seems to be outside of the radiated area.

I guess I don't agree either with your radiotherapist's interpretation of the NICE guidance. I wonder if he has looked at the research and reports that were submitted for review during the consultation.

Best wishes

Edited 08/22/11 10:36