Hi everyone,

I'm happy to have found this community of folks with Dup helping each other. I'm new to this whole Dup thing. I've done as much research as I can about it. I have early stage Dup and, from all the research I've done, I am leaning toward radiation therapy as it seems to have the best results for early stage Dup.

I've noticed that a lot of people on this forum go to Dr. S in Hamburg for RT. I have looked up my insurance coverage, and RT therapy is covered for early-stage Dup, so I'm hoping to find a specialist in this therapy (for Dup, specifically) in my area. (Don't get me wrong, I love Germany and would love to visit, but it would certainly be less expensive to have the therapy done in the States.)

From what I've read, having a specialist that can properly identify all nodules to ensure RT does not have to be repeated for nodules that were missed is very important. Has anyone had experiences with a specialist in the northern Virginia area that they would recommend. I'm hoping to hear back from anyone that had the therapy done several years ago (so they can share experiences based on long-term results), although I'd be interested from hearing from anyone that's had it done here and was happy with the results. (I guess I'd also want to hear about specialists to avoid.)

Please also, even if you haven't seen a doctor in my area, provide me your thoughts on how to make sure you've found the right doctor.

Thanks so much!

Thanks, Tusk. A 2-hour drive but doable...and much closer than Hamburg. :)

I'm definitely not an expert on this...just having been diagnosed a couple of weeks ago myself. (In fact, at this point, I've only been diagnosed via phone consult and photos that I sent to the doctor...so I suppose there's a slim chance I don't have DD... I doubt it, though, as my clinical presentation is exactly that of DD and I looked up the other things that can cause the hand tumors, but none are anything like what I have.) The doc will do an in-person consult when I go for treatment...and obviously would not do treatment if she determines it's not DD.

I did a lot of research and feel that, for me, the best course is to get the radiation therapy before I start to get the contractures and then RT is not an option. I told my doctor that I found 3 nodules 3 weeks ago, but now had 7...she said that was pretty fast, so I'm concerned that it may be the aggressive variety. I've read that there's an 85 percent change of stopping progression with minimal side effects if RT is done while disease is active and contractor hasn't started...it seems the risks of other treatments may be a little higher. Because there is a doctor within a few hours' drive of me who is recommended by the pioneer in Hamburg (Dr. S), I feel comfortable that she is qualified to do the RT correctly. Also, the RT is covered by insurance, which helps and shows that my insurance company has found RT to be an effective therapy for Stage N.

I begin my therapy on August 11th. I'll post updates afterwards regarding outcome.

There are a lot of folks on this site that have a lot of experience with the disease. You might post a question asking for feedback on RT vs. wait and see. I think you may also find some conversations about it. I read a lot of posts and it seemed that the consensus was low risk, high reward.

Karen

My pleasure! That's why we're all here, right? To muddle through together and help and support each other and celebrate together when they find that cure! :big grin:

My radiological oncologist (who studied with Dr. S in Germany) is doing a type of CT screening on my hand to precisely identify where all of the nodules/cords are and then will mark them before doing the radiation. I'm not sure if all doctors do that, though.

Best wishes to you in your journey, Coogeematt. I'm glad that your nodules have not progressed since first identifying them. That's great. I'll continue to follow your posts. You provide very thoughtful posts (i.e., reflect a lot of research, study, and feelings).

Take care!
Karen

Thanks, Kevin!