I completed radiotherapy in July 2014 with Dr Ghafoori in Austin Texas. Since that time I have had an additional four nodules appear on my right hand. I have also experienced consistent aching and throbbing pain in my right hand as well. I feel that the disease is progressing more rapidly than before I had the treatment. Has anyone else had this experience? I know there's no looking back and I believe that I made the right choice however since that time I have been in more pain in my hand is rapidly progressing. I'm 38 years old and just noticed the first nodule last January. So within one year I have gone from one small nodule to a full-blown cord on my ring finger with additional large nodules on my thumb, pinky, index finger, and middle finger.
Thanks.

Phaneo,
I think SB is right to ask about your doctor's experience with RT for DD. I see from a quick online search that he has wonderful general credentials (Harvard medical degree, research grants from important national institutions); but do you know how long he's been doing RT for Dupuytren's patients?

I would note too something that has become more apparent to me as I've read through the research literature on RT for DD. Namely, that there's not a lot of it, and it all more or less seems to be coming from the same people--Seegenschmiedt, essentially.

It always makes me a little nervous when there's not a wider base of research data on which to evaluate and make decisions about treatments. And even when you read Seegenschmiedt's work closely, you find plenty of things that complicate the idea that RT is a panacea, or even a more or less reliable and unproblematic strategy for dealing with the disease. In the big book Seegenschmiedt co-edited on Dupuytren's with Eaton and a number of other important figures in the field, he acknowledges that, from patient standpoint, overall satisfaction with the disease progress 5 years after for those who had received RT was not exactly stunning: only about 50% of those who had RT were satisfied. Granted, this is against only 10% of those who did not have RT, but it still means half of those who had RT, whatever the 'objective' reading of their status on the part of the medical staff, were dissatisfied with where they were. That figure is not all that comforting.

I say all of this in the context of wrestling mightily with whether or not to pursue RT myself, as I'm in early stage after diagnosis about a month ago. Part of me is greatly drawn by the shiny side of Seegenschmiedt's data and some of the reports I've read from those who've had the treatment, but my skeptical side is, well, more skeptical. Seegenschmiedt has after all been writing about this for a few decades now. It's difficult for me to understand why the idea has gotten so little traction outside of his circle after so much time. Or am I failing to find research literature on the results of RT by people other than Seegenschmiedt and those around him? SpanishBuddha? Wach?
best,
Molloy

Stefan_K.:

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Molloy, you are raising good points and questions (especially for someone who has been diagnosed only recently). I am also very interested in the answers. Having said that, even if the objective positive effect was only let's say half of the reported subjective improvement (50% satisfied vs. 10% = x 5), it would still seem worth trying.

His credentials are great but I'm not sure how long he has been treating DC. I did ask how many patients he's treated and what the outcomes were and got a rather vague answer. I'm guessing it was because he didn't want to give any false sense of hope. I would also add his staff seemed somewhat unfamiliar with the process but were all very nice and comforting. I also asked what dosage I was receiving as I had read the standard protocol. He responded with I think 3000 centigrade. I asked if that was the same as 30 Gys and he said yes. If that's the case I got the standard treatment.

All I know is that six months after RT on my right hand the disease has progressed more than it did in the six prior to treatment. I would also like to add that I was told there was a chance the RT could make it worse, a small chance but nonetheless, a chance. I did a lot of research as well and found many medical journal articles from other sources to respond to Molloy's question(I used medical databases at the university I was studying at).All research seemed promising so I made the choice. I also had a similar experience in that both hand surgeons I saw were unfamiliar with RT and I saw the head of hand surgery at a large academic based hospital in Dallas.

I can't say I regret it because that would do me no good, but I do wonder if it caused the rapid progression and pain. I literally noticed a small nodule about a month ago under my thumb, it is now as large as a pea and visible to the naked eye am in constant pain. I guess all I can do is wait.

Molloy:

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SpanishBuddha,
What was the reasoning you were given as to why it was too early (i.e., what characteristics served to define "too early") for that hand? And did you ultimately get RT done on it?
best,
Molloy