Recurrence after Radiotherapy

It's an important aspect you report and it explains why it is important to carefully plan the first step !

In some publications the rationale for radiotherapy is questioned and it seems that Dupuytren and Ledderhose Diseases can be compared with keloids or hypertrophic scars, where radiotherapy acts best, when applied with a higher single dose like 3, 4 or even 5 Gy ! Usually these disorders are NOT irradiated with single doses of 2 Gy. So I believe SINGLE RT DOSE plays a major role in the effectiveness of radiation therapy and possibly total dose is less important ...

Unfortunately there is only one (German) publication available with 10 x 2Gy from Köhler et al. (1984): After a relatively short observation time of 1 - 3 years they observed a progression rate of 18% !

THis is much higher than the results of Keilholz et al. (1996/ 1997), Seegenschmiedt et al (2000) and Adamietz et al (2001), who all used 3 Gy single dose .... Seegenschmiedt has summarized the clinical trials in a book http://www.scribd.com/doc/30743418/Radio...gnant-Disorders on page 177.

So my conclusion is to use 3Gy or higher single doses for primary treatment and if there is a relapse with 10 x 2Gy I would go for a changed single dose: perhaps 5 x 3Gy is sufficient !?

You should ask the PROF ! I was treated from him and he seems to be a very experienced physician ...

Edited 02/03/11 20:55

You make an important distinction. As I understand it (and as has been stated repeatedly on this site), RT is not effective in reversing contractures. It is effective at stopping the progression of the disease by stopping the growth of active nodules, and even shrinking them.

I had no contracture at all when I was diagnosed -- just four nodules and a knuckle pad. The four nodules had all developed fairly rapidly. Therefore, I was a perfect candidate to have the disease stopped in its tracks by RT. Nevertheless, my doctor-- a highly-respected hand surgeon -- told me there was "no conservative treatment," and that I should come back in a year to see if my hands had deteriorated to the point where I needed surgery.

I went home and did research on the web, and quickly learned about the research that has been done on RT and the many patients who have claimed to have successful experiences with it. If I can find this out in a few days, I don't know how it's possible that a doctor who specializes in hands would not have known about it. His not telling me about it means that either he is shockingly unversed in developments in his own field, or deliberately withholding the information from me -- a patient who should have the option of making informed decisions about a matter this important to my health and future.

Even if RT was not an option he recommended, he still should have told me about it, but said that he didn't recommend it.

I have looked at the literature on DD on some other hand surgeons' websites and have seen similar statements about there being no treatment to stop the progression. The way that these surgeons willfully ignore the research that has been done on RT, and the many highly reputable radiologists who are using this technique, is so extreme to me as to suggest that these surgeons want patients to become disabled so that they can conduct more surgeries. Otherwise, why aren't the surgeons at least saying things like -- some patients have undergone RT for this condition and believe it stopped the progression, but the research is not definitive, and there are risks involved, so it is controversial... etc. These would be true representations. Pretending this treatment doesn't exist is not.

And I am a little angry about what happened with this surgeon because I do feel that I was harmed by his failure to tell me about RT. If he had told me, it might have saved me some time, allowing me to get the RT sooner. As it was, the disease was progressing so fast that I was left with some lack of function after the RT (its not serious enough to need surgery for, but its something that never should have happened if hand surgeons were handling this disease in a responsible way.) And it scares me to think about the state my hands would be in right now if I did not have the Internet to go to as a resource. So yes, I do think this borders on malpractice (though not anything you could win a court case on.)

If a patient already has a contracture that they want corrected, as it sounds like you did, that is of course a different situation.

Edited 02/04/11 02:29

Lori and Maddie,

I couldn't agree more. I was told the same thing - "The only thing to do is wait until you hand is severely contracted and then do surgery." Granted, i didn't go an hand specialist as recommended by the general/knee & hip orthopedist, but he, the general ortho, my dermatologist and my GP all said that same thing. I wouldn't necessarily expect them to know (although now they have no excuse because I have showed them results for me), but I, too, would expect a hand specialist to explain ALL options.

My DD was and still is predominately in my palm. Finger joints affected very little, Even so, I KNOW my hand would be a claw by now if I hadn't had RT. The RT margins seemed large enough to me - the whole palm and all metacarpal joints.

Just wondering, does DD always radiate out from a starting point? I'm thinking it could be developing at different points at the same time. My nodules all over the palm would indicate that. Maybe it can still start up new somewhere else even if the RT stops it in the initial places.

Maddie, my experience is similar to yours, start up and rapid progression of DD, I had RT very quickly after diagnosis, same protocol as yours (20Gy over 2 weeks). However, my DD is now continuing to progress and develop even inside the treated area although I can tell the RT was effective with several nodules in the little finger areas of both hands. Again a very aggressive version of the disease is probably different than the typical slow developing version. I have painful nodules as well.

Perhaps the 5 x 3Gy would have been better for me. Hard to say but that is past me now.

I've read that Professor Seegenschmiedt says that RT works for 2 of 3 people and I know my situation is far more aggressive than most. I am contemplating more RT and have the same dilemma you are facing with options.

As far as the hand surgeons and RT, I bet you could count on one hand the number of ASSH surgeons who would recommend RT, I've consulted with several and you could the jaws drop when I mentioned I got it. Heresy. I don't think RT exists in their world. It is a cancer treatment to them. They have no training or education on it as a treatment for DD.

I totally agree with everyone above.... I had the same negative input from 4 different hand surgeons I consulted during the years when my DD started to progress. Had I known earlier about the possibility of RT and NA, I wouldn't have wound up with a badly contracted small finger in my right hand.

Fortunately I became informed through this forum...and five years ago had my first NA (followed by a repeat NA on the same finger four years later). Mine is a stubborn contracture (PIP joint, plus boutonierre deformity) and both times the contracture returned.

However, I've had great success with RT on my left hand and left foot. Its been over 14 months, and the RT stopped the progression in the radiated areas.