I'm tentatively planning to get radiation in Germany at the end of May. Haven't yet booked the flight because I'm having a hard time accepting the fact that there may be unpleasant side effects from the radiation, i.e. dry skin, loss of skin elasticity, possible muscle weakness and who knows what else. I have several small nodules and a few cords, but no contracture. Is there anyone on here that can tell me that the side effects aren't really that big a deal and I will be thankful that I went ahead and received radiation?

Hi Australia Calling.
In 07 I visited Prof Seegenschmiedt and had both hands and feet treated with radiotherapy. You must be happy with your decision as with everything in life. Personally if you were under 40 I would possibly wait. However having said that whilst I was in Essen Germany a 16 yr old youth was being treated for ledderhose. I am more than happy with the result having previously had 15 odd surgeries including 4 skin grafts. There was certainly no loss of strength . I had a drying of the skin which I treated with Urea creme which helps retain moisture. Hope this helps.

I had RT almost 3 years ago on my right palm including all MCP joints. It was successful, grip strong again, no dryness. I am the "poster child" (well, 74 not a child) for dry skin and I can't tell any difference with the other hand or skin. The protocol used on my hand was 2 Gy x 5 days, a weekend in between and another 2 Gy x 5 days. About a week after my RT was all finished, there was a little flaking in less than one inch diameter of my palm but only in the web of my thumb. That lasted a day or two and that's all.

As for cancer, I'm not worried about the less than 1% risk for RT after 25 years. I agree that if you are younger than 40, you might want to consider postponing it if you can. I see my dermatologist every 3 months and he freezes the many precancerous spots. Even so, I have had skin cancers on the back of my left hand, face, leg, arm, but the biopsies got clear margins. I am very fair and it's the sun that is the high risk.

Planning hasn't been done yet, but I'm planning RT on my left hand soon. To me, it doesn't look like i will need to have the whole palm done, but we'll see what the MRI shows. I am proactive about having RT before contracture.

Also had RT on hands. So far so good. No side effects, not even dry hands anymore. Nodules are as good as gone. As of now, progression has stopped. Also went to Prof S.
Going in on Monday for RT and Consultation technically can be done. You will be very, very tired. It's a long flight and hopefully you don't get delayed and make it on time. Had a 3 hour delay right from the get go - United - and therefore missed my connection in London and was stuck at the airport for 6 hours. I will only take Lufthansa from now on.
I would recommend you arrive on Sunday and leave on Friday.
As the saying goes: It's not were you travel, it's were travel takes you!

Good Luck!

Christl

switcombe:

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Thank you, Christl. I'm going to heed your advice and fly in a day earlier. Does anyone know what time the clinic in Hamburg opens? My flight out is on a Friday at 10:30am.