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And as the radiotherapy is designed to stop the cells from progressing to the point where a cord is created or a contracture has resulted, it is pointless to go for radiotherapy in the later stages of the disease after the cells have "mutated" and the damage has been done. I would suggest that anyone who knows they have the disease seek radiotherapy at the earliest opportunity.

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That's a rather worrying read! I was intending to write to my GP this week with details of this site and available treatments. I'm about 18 months or so into my Dups and it started with one small pea sized bump in my palm (right/ring finger). I now have 3 larger bumps in line with that finger and two small bumps on the line of the other middle finger next door. I've no contracture yet so I hope that I'm not too late?

Bruce:

When Dr. Denkler did my N.A. last August, he did not mention following up with N.A.

I wonder if his thinking on the issue has evolved.

At any rate, I don't see myself going all the way from California to Germany for radiotherapy. Too many family responsibilities.

I'll just keep hoping that radiotherapy becomes more acceptable in the U.S.

Thanks for another great post.

Mark

I agree that it should be possible to have Dr. Denkler do a palpation and provide the maps to the radiotherapist. I doubt though that Dr. Denkler whose focus is on plastic surgery and NA would be as adept as Professor Seegenschmiedt who has a great deal more experience with people with Dupuytren's.

I spoke with the head of the oncology department for the San Francisco medical center which is a teaching as well as a medical facility. I asked about the possibility of receiving radiotherapy for Dupuytren's and he told me that radiotherapy was an outdated approach that had not been used for the past 20 years. This was in March of this year that this USA professor expressed this knowledgeable and enlightened observation.

I decided not to spent the next year looking for someone willing to do the treatment, and if it is not a medically sanctioned treatment in the USA I could end up having to personally pay the $8000 or more for the treatment. Cheaper to go to Essen and also I avoid the delay in treatment and know that I am receiving the best possible treatment available at the present time.

It is a more difficult decision to make for people living in areas other than the UK or Europe.

Bruce

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but he thought my case could be managed without it.

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How do you manage something that is unpredictable but likely to get progressively worse?

Reading through the thread, the suggestion is that radiotherapy as soon as possible is the best hope of slowing it down or better?

Apologies if I read your post wrong but rightly or wrongly I'm seeing a few mixed messages.

Diane

I had my NA procedure with Dr. Denkler on March 12, 2007 for both hands. At that time I mentioned that I would be going to Germany for radiotherapy to minimize the likelihood of recurrence of the contractures and the need for future NA or other surgical treatments. He said he thought that this was a good idea in terms of a more comprehensive approach to Dupuytren's management.

You can choose to continue to have NA procedures or hope that NAC will halt the disease progression. I have chosen to receive the radiotherapy and to also take NAC in hope of minimizing the odds of either recurrence of the contractures or other effects from the progression of the disease.

I expect to be around for another 20 or more years and so the investment in the NA procedure and the radiotherapy is being amortized so to speak over that period of time, and hopefully longer.

NAC and radiotherapy are the only treatments I have found information on that would lead me to believe they may stop the progression of the disease. The NAC is less expensive, but all the studies with regard to Dupyuytren's have involved radiotherapy. There may be side effects or problems with taking NAC over a period of 20 years. No one really knows.

The odds of cancer with radiotherapy is less than .005, or one person for every 200 treated though the number of people treated is too low for this to be a statistically reliable value. Of course even getting cancer does not necessarily mean a fatal outcome within the normal term of ones life.

Doctors for reasons of professional reputation and liability are not going to recommend any treatment that is not accepted by the majority of the medical community and in the USA this is a very conservative group of individuals.

Bruce