I have gone to two orthopedists/surgeons now that have both confirmed Dupuytren's. I went in for a second opinion since I am on the younger end of the spectrum (31 years old). During both sessions, I inquired about radiation therapy and both advised against this. Both have pointed to "unproven" benefits and "soft" studies, with concern over the potential long term side effects. Have others had similar experiences?

Based on my research online, it sounds like R/T is far more common in Europe than the US. Are doctors in the US simply unfamiliar with the treatment or is there more to this that I am not considering? Based on my initial research, it seemed like an obvious, proactive next step (I have no contracture at the moment and have one nodule/cord), but now I am questioning.

Edited 02/12/16 21:20

I believe the situation is slowly changing. 10 years ago nobody in the US did RT for Dupuytren disease. In the meantime the list of clinics offering RT for DD/LD is continuously growing http://www.dupuytren-online.info/radiotherapy_clinics.html.

In Europe the situation is split. RT for DD is fairly common in Germany and a rare treatment in the UK. But in the UK NICE is already giving guidance http://www.nice.org.uk/guidance/IPG368 and I am sure that eventually more hospitals in the UK will be offering radiotherapy for DD/LD.

Surgeons are generally reluctant to accept positive effects of RT. I guess that's how they were educated. It will take time to overcome this situation and achieve a more evidence based approach. Too often surgeons tend to forget that the evidence for the long term results of surgery for DD, and even more LD, is not better than for radiotherapy. Long term follow-up seems to be more common for radiotherapy than for surgery. Of course, this has a reason. The success of surgery is instantly recognizable but for RT it takes time, and the same applies for assessing side effects of both treatments.

Wolfgang

I think most hand doctors or orthopedic surgeons would tell you stay away from R/T. My brother was at the Mayo clinic doing a residency and put me in contact with their hand specialist and he said that his biggest concern would be scar tissue in the hand from R/T that would cause problems in the future and secondary cancers. When I brought that up to my radiation oncologist he just laughed and said, "They have no idea what we do!" He explained that the electron beam radiation used is so low dose that scar tissue and secondary cancer risk are very, very low. I think I read somewhere that doing the recommend dupuytren's dose on such a small area increases your chance of secondary cancer by .01%.

I've chosen to be proactive in treating mine, I couldn't wait for the disease to run its course. It's a decision every patient has to make!

bstenman:

---

The XRT for Dupuytren's is done using a focused beam and the depth of the radiation is controlled to a fraction of a millimeter. In Germany where I had my first round of treatments the doctor had been doing this treatment for decades, definitely long enough for skin cancers to become apparent. My second round was done in the USA and the doctor had done research with the German doctor but not done the procedure. A CAT scan was done to determine the exact depth needed before the XRT was done. There is a recommended interval between the first and second round of treatments to give the body time to recover.

99% of the physicians in the USA are completely ignorant of this disease and not to be trusted for advice. They confused radiation of the skin with radiation of organs or the brain as is done with cancer treatments and this is vastly different in terms of the level of radiation used and the organ being exposed.

XRT is most effective at the early stages of the disease. In my own case my family doctor failed to accurately diagnose my condition and treatment was delayed by a year. The disease progressed further and in particular with my left hand. The XRT was done in 2007 and I have had no further progression of the disease with my right hand. My left hand where the disease had progressed further was helped very little if at all by the XRT.

I have had NA done in 2007 on both hands. I had a NA done again in 2011 and twice in 2013 and only on my left hand. The NA done in 2013 was done in conjunction with Xiaflex injections which greatly increased the efficacy of the treatment. A full two years after the last NA/Xiaflex sessions with Dr. Denkler my left hand is still in great shape.