Philip's long term experience with radiotherapy of Dupuytren's disease
I was diagnosed with DC in my right hand in 1999 at the age of 35. At that time it was progressing quite rapidly, it went from having a nodule on my right palm to not being able to put my hand flat on a table (due to a cord) over a period of 5 months. After my first consultation with a speciailist I got a second referral with Paul Smith who at the time was the UK's leading Dupuytren's Contracture specialist, both surgeons gave me the same story, that surgery was the only possible course of action. I already had some knowledge of the disease from an ex work-colleague who had had a number of surgeries for DC and I was not impressed (long recuperation time, repeat surgeries etc.). As a result I did a lot of research (mainly via the local library as there was almost no information on the Internet at the time) and came across both radiotherapy and NA as possible alternatives to surgery. Through researching radiotherapy I made contain for a Professor of Radiotherapy in the UK who also happened to have DC and had got himself treated for it (who at the time wished to remain anonymous because of the UK medical establishments opposition to anything other than surgery as a treatment for DC). He helped me make contact with a hospital in Munich and I went there for an 'accelerated treatment'. The Professor devised a hybrid of the German (2 x 5days on treatment 3 months apart) and the French (5 treatments 2 days part i.e. 10 days duration). As the treatment was not official (my GP doesn't know about it as it wasn't approved in the UK) and I had limited holiday allowance left for the year, I was given daily treatments over 5 days which I believe were of slightly higher dosage than the standard German protocol. In 2002 I developed DC in my left hand, and it developed even more rapidly than my right hand had, I again went to Munich for 5 days of treatment.
In both cases I felt immediate benefit during the treatment, the cords and the nodules softened and I was able to put my hands flat on the table again. I was advised to take high dosages of Vitamin E for 3 months. Over the few weeks after treatment my hands further improved back to point where my hands were almost back to normal in terms of flexibility. I also did not suffer any side effects e.g. dry skin. It is now 2008 and my hands have suffered no further progression since the radiotherapy, for my right hand, this is now over 9 years i.e. the treatment from my perspective has been very sucessful.
My general advice to anyone with early stage DC is to seriously consider radiotherapy as the first course of treatment and don't leave it too long. In 2002 I struggled to persuade my boss to give me holiday and probably had the treatment a month too late (the progression was very rapid), as a result, although my left had is flexible I have a number of visible (soft) nodules on my left hand which I wouldn't have had if I could have got earlier treatment.