spanishbuddha:

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Hi ping pong. Welcome to the forum.

It's difficult to give precise answers to some of your questions, which is why the research is ongoing. Some facts are known, gene bases, pathways at the cellular level, some statistical on rates of progression leading to contracture, statistical links to smoking, diabetes, trauma and so on. Even so there's no cure, and the unpredictable nature of the condition for individuals remains a difficulty for any physician and treatment.

For the majority who get symptoms later in life it does not progress to contracture, but those getting it earlier, such as you might have a more aggressive form needing more ongoing management. Or not! That's the conundrum and difficulty.

To treat with RT or not and when, there is no single rule, early seems better, early in a cycle as well as early in discovery. The Prof in Germany used to use a points based scoring system using systemic health factors, a physical exam, rates of recent progression, size and feel of nodules, blanching, patient reports of pain, cramp, pins and needles, and so on, add in his own experience, and the decision was made whether to treat or not. You have probably seen reports on here of people who seemed ripe for RT, put it off, and their condition went dormant anyway. That's how it is. The converse too, people who seemed appropriate for RT, were treated, and were disappointed that it did not help; they are in the 15-20% of failures. There are no known cases of a cancer directly linked to RT for DD, but some people do report persistent side effects, oedema, nerve damage, dry skin. RT has been used to treat people younger than you, and this is where you need to consult with a radiologist who has experience of treating cancers at much higher radiation doses across all ages, but it remains a relatively low dose, non vital organs, an extremity, and minimal penetration.

There remain clinics in Germany, Essen and Frankfurt, where the experience in treating with RT is high, the UK too now, and some of the US ones listed on our website are building their experience up. Your best option is to make your own decision first on whether to consult or not concerning RT, then interview the radiologist chosen with a list of questions such as those you present here to establish their experience, and reassure your own choice and establish the person to person relationship. You may have seen I recommend people keep a log of symptoms, with photos, so that rates of changes, nodule sizes, flexion or stiffness, can be objectively assessed. I think if you are cautious and delay now to see what happens, that's fine, but you will know when you want to have something done if that ever happens! Where abouts in the US are you?

There are the risk factors, and genetics is one of them. Not a direct cause but a link. Do any apply to you, within your control. It's like the stories you hear about people living in their 90s or 100s still smoking and having a daily stiff drink. Fine, but statistically it does not apply to all as a lifestyle recommendation.

I should mention there are some support groups on FB that have a predominantly US based audience, and there is a lot of experience there which might help you with treatment in the US if you need to. Some groups are better than others though and it depends on the admins or moderators whether you're getting the party line or useful objective information.

Best wishes SB