I had my second course of treatment done in the USA and was comfortable doing so only because the people performing the treatment had the hand mappings and protocol created by Dr. Seegenschmiedt to use for guidance. Dr. Denkler had performed an NA procedure on both hands only months before my visit to Dr. Seegenschmiedt in Essen and had underestimated the degree of progression in my second hand, which had a nodule but very little in the way of a contracture compared to my primary hand.

I had both hands treated as in my judgment the risk was slight from the radiation and I wanted to stop the progression of the disease in both hands. As XRT can only halt and not reverse the development of Dupuytren's I can see no reason not to be "aggressive" in treating it as soon as possible once the disease has been diagnosed.

With XRT there is not good information being provided as to the risk involved. As only the hands are exposed with low levels of radiation and no major organs other than the layers beneath the skin it is going to be radiated the risk is much less than that involved with traditional radiation treatment for cancer. Age is also a factor as cancers resulting from radiation exposure can take decades to develop (as with the breast cancer in the USA whose geographic distribution is strongly correlated from exposure to radioactive fallout from the atmospheric testing of nuclear weapons done over a period of more than 30 years). The risk is likely to be higher for someone receiving XRT in their 20's or 30's than for someone who is 50 or older.

Unfortunately there is no hard facts as to risk for different treatments (hands versus feet) or for men versus women or by age group to use to make a completely informed decision about XRT. The only statistics I have been able to find relate to the efficacy of the treatment and not any side effects.

Nonetheless my own experience was that under treatment is likely given the justifiably conservative approach of medical practictioners in this area of medicine in the USA. Medical practitioners are more worried about lawsuits and loss of their medical liability insurance for deviating from an "accepted standard of practice". They are a lot less worried about recommending risky surgery that is "accepted" than something like XRT for Dupuytren's which is not considered an "accepted" treatment in the USA.

dwilson540:

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I'd agree with most of what you said. I too, judged the risk for radiation to be slight since I'm 60. There wasn't a lot of information about radiation, but I wanted to be as aggressive regarding treatment as I could be. I have a friend who wasn't aggressive and who wound up with bad contractures.

My particular doctor, now retired, was from Switzerland. But once he knew about the problem he was ready to go regarding treatment. I understand that he had treated someone else the previous year. Also my insurance paid without question, so I have to assume that it is becoming somewhat acceptable as a treatment.

I am thankful that this site exists because without it I would not have known about the various possibilities for treatment. I would like to have had more knowledge and certainty, but weighing the "risk / reward ratio" I quickly decided that radiation was worth the risk.

Dale

dwilson,

Thanks for the update. Very glad to hear that RT worked for you, too. It's the "only game in town" at this point to stop progression as an early intervention.

I don't know what early intervention is. I noticed some very small nodules on the palms of both hands. I don't think I can even feel cords. But I had a friend who had an advanced case of Dupuytren's and it scared the beJesus out of me. Also, I'm married to a woman who is a surgical nurse who has drummed into me, at the very first sign of anything, go to a doctor, they can do miracles if given enough to work with. So I started doing online research, found this group and went to a couple of orthopedic docs. After hearing negative things from them I refused to give up, called two hospitals, I think it was Scripps and University of Virginia and was set to fly to UofV. Then, I called the hospital where my wife works and talked to someone in the radiation / oncology dept. At first they didn't know what I was talking about, but they were willing to talk to the Doctor and came back with, "Oh yeah, we did one of those last year."

I was also fortunate enough to have BCBS pay for the treatment.

At first sign of this I would run to the nearest radiation treatment center and see if I was a candidate. Why wait?

Regards,

Dale

I agree that the doctor will probably give me the wait an approach answer and I am sure surgery is not an option right now. I am going to try and avoid surgery for as long as I can. I am going to him first just so he can fax my results to the oncologist in Boston. I have talked with them on the phone and they say not everyone is a candidate for RT. I haven't met with them yet so I am not sure what they consider a good candidate.