I'm taking a comment Callie made in another thread and starting a new discussion here.

callie:

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The arches were painful about three years. I could walk but there was pain anytime I did something out of the ordinary that would stretch the arches. I had two marble size nodules in each arch. These came on almost exactly when the nodules appeared in my hands. The nodules became elongated in my arch (except for one of the nodules) and are absolutely no problem for me now.

No, I didn't have RT. That is what makes me wonder. If I would have had RT, I would probably be telling everyone how great it was and how good my feet are doing.

Dawn,

I completely agree with your assessment/concern. It is so difficult to use a controlled group for Dupuytren's because of the totally variability of the disease. The same thing happened with my two hands. I developed almost identical nodules (actually two nodules) in each hand (and feet) almost simultaneously. The two hands progressed completely differently. My left hand nodules advanced to a cord and 90 degree contraction (little finger) in 18 months. The right hand never developed a cord nor contraction for over 13 years.

A person (I think "retired teacher") on this forum had RT (from same provider) just a few weeks before I did this year and, from last report, had no success from the procedure.

The problem I have is discerning whether some of the "progress" from some of these procedures is "medical hype" (Xiaflex) to promote their respective procedures and what is valid progress. I suppose there is a little bit of both because of the difficulty of this disease. Dupuytren's is definitely not a linear acting disease.

1) Stage of Dupuytren's when treated: I had a growing active nodule at base of little finger that was tender to the touch. The nodule was "feeding" a very newly forming cord. The cord was just starting to create a contracture. Another nodule was developing simultaneously in web between forefinger and thumb. No cord had yet developed at time of RT. Both areas received RT.

2) How long between when you were diagnosed with DD and when you were treated with RT? The time when nodule was first noticed until RT was approximately 8 months. I self diagnosed because of prior knowledge of Dupuytren's.

3) Extensive and active? It was one nodule in each location mentioned above.

4) Other pain or discomfort? No, all abnormal feelings were confined to the specific areas of the nodules. No other known health problems in the hands.

5) Where treated? Portland, Dr. Cha at the Oregon Clinic:Radiation Oncology Department (ph. 1-503-215-6029). This location is at the Providence Hospital at 4805 N.E. Glisan St., Portland, OR 97213, just off I-84. www.providence.org/radiation.

6) What protocol used? 3Gy x 5 with 10 1/2 week interval and then 3Gy x 5.

Edited 10/17/13 17:35

There is actually some good data showing the effectiveness of RT. While not a randomised control trial, there is a study with an untreated control group that shows that the disease progressed in about 52% of patients compared with about 16% of the group that received 30Gy. This is highly significant at P<0.001. The group sizes are 122 and 303 respectively.

2012 publication Long-Term Outcome of RT for early stage DD: a phase III clinical study. Seegenschmidt et al.

In summary "the use of RT in early stage DD is superior to observation only. .........stage N patients ......clearly benefit from prophylactic irradiation."

While not perfect data ie it is not a RCT, it is strong. Given this data it would be unethical to do a RCT.

I am happy to email this to anyone who wants a read.