And I hate to say it, my finances factor into my decisions. While I want the best of care and the best doctor and treatment available, I have to consider what it will cost and weigh that against the success rate of that procedure. The expense of NA with Dr. Kirkpatrick is so much lower than a treatment of Xiaflex. I don't ever plan to use Xiaflex again for many reasons, but one is the cost. Now I need to weigh the decision of having open surgery as opposed to NA. I'm doing that based on the potential success based on the finger and the degree of involvement of DC in that area.

~ dawn

The effect is quite well researched for Dupuytren's nodules and evidene is far beyond anecdotal http://www.dupuytren-online.info/radioth...literature.html . The effect of treating knuckle pads with RT is different. I am not aware of any study on that.

Wolfgang

cschieber:

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...The evidence for RT is anecdotal and maybe many who were treated wouldn't have progressed anyway but based on my experience and that of others on this forum, I believe it does work in some cases.

1. How am I to determine if I am at the stage for RT? Apparently I am going to have to convince the oncologist. I do experience the crawling sensation. My guess is it is active.

Aside from the sensations like crawling, are new nodes appearing, or are old nodes growing?

2. Do I listen to Dr. Kay Kirkpatrick and not attempt radiation since she says it does not work for DD?

The German clinical trials are persuasive that it tends to work well for nodules in early stage, but doesn't work well for cords in advanced stage. The fact that the treatment has not become common yet in the U.S. does not mean that it is not a good treatment. One obstacle for it to become common is that most radiation oncologists don't have experience with diagnosing DD -- you have taken a good step by engaging a hand specialist to diagnose the condition before going to a radiation oncologist.

3. Who out there has had radiation for DD?

I did earlier this year.

4. How successful has radiation been for you? (please provide details)

In the German clinical trials, they followed up on their patients several years later. In my case it has been only a few months, so it is too early to say, but I can say that my nodules have not grown since treatment.

5. How do you make sure ALL the diseased area is radiated?

In my case, I went to a hand surgeon (who had no experience with radiation) and showed him a photo of the ink markings that Dr. S made on his patients to indicate the nodules and cords, and an outline around them to define the radiation "field" i.e., treatment region. I asked the hand surgeon to mark my hand up the same way. He then palpated my hand, and marked the field that he recommended, which looked a lot like those for Dr. S. I then took a photo of my hand before the ink washed away, and I took that photo to the radiation oncologist (who had no experience with DD) along with the German clinical trial journal articles. The radiation oncologist used the photos to define the radiation field.

If you went to a radiation specialist who had more experience with DD like Prof. S, then he/she could palpate your hand to define the radiation field without needing the assistance of a hand surgeon. My experience was that my radiation oncologist had no idea of what to do, regarding palpation -- neither he nor his resident assistant thought of using their own fingers to feel my hands, unlike the hand surgeon who immediately uses palpation on your hand when you mention DD.

stephenp:

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I had RT on both hands which has worked in that the disease has not progressed, nodules have become smaller, flatter and softer and on one hand a early stage cord a gone.

I presented the GP and then the radiologist with a number of papers including the one referred to above. Both were receptive.

"Long-Term Outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase III Clinical Study" http://link.springer.com/chapter/10.1007...-642-22697-7_44 .

In summary, where RT was given prior to contraction, DD progressed in around 5% of patients compared with 35% of non treated patients.

I can email this paper to anyone who has trouble getting a copy.

If this still doesn't work, change doctors.

Jolene - That's the problem, isn't it? What to do when for this disease is like a big crap shoot. I'm not an expert but it sounds to me like you're at the perfect stage to get the radiation. It's early and sounds like it's active, as you are noticing things developing.

I talked with 2 hand specialists before I had radiation, for which I self-referred. Both are noted surgeons and one trained with Dr. Eaton and is listed on this site - if I ever need NA, he's my man. But both told me the same thing about RT that every other surgeon seems to - no evidence that it's effective. Not recommended. Surgeons heal by cutting. American medicine often seems behind the times, perhaps because of the ludicrous health care system we have to suffer with.

I know the data & studies on RT are not great, esp since so many people with this disease would not progress in any case. I'm glad I had the RT although the jury is still out on the results. I'd probably do it again. For me, finding an experienced, enthusiastic radiologist-oncologist was key. This practice is open to treating benign diseases with radiation but others are not. I hope you can find someone like that.