jimbob0802:

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Hello everyone

I have read Alistair Cook's report with much interest, and it has been the document I referred to the most when I went to the GP yesterday to try and put in motion a referral on the NHS for radiotherapy treatment.

The thing is, despite the seemingly obvious DD in my lef hand (spanishbuddha and steffan have seen the photos), I still want to be 100% sure that RT is the way to go. As such, I was wanting to send pictures of the current state of my hands, as per Alistair Cook, to a specialist like Professor Seegenschmiedt. (In an ideal world, I'd like to do the same to the radiotherapists operating in the UK, but I don't know if this would be possible).

Is it still possible to do this, as Alistair Cook did? Or is there any other specialist I can send my photos too?

Final question: do you folks know of the success rates/knowledge of radiotherapists here in the UK? I spoke to the secretaries of quite a few listed from the BDS website and they all seemed confident I would get a referral if the GP could release the funds to have it done in another area. Assuming the GP is able to do so, I would like to visit a renowned specialist in the field - although I know I can't be choosey. Is there anyone in particular within the UK who is considered with the same gravitas as Prof Seegenschmiedt?

Thanks for your help,

Jim

Edited 04/09/16 16:46

I was treated on both hands by Dr. S in Oct 2015 and Jan 2016. I would say I'm happy with the results. I had general slow but regular progression prior to the treatment, but it seemingly stopped after that with perhaps slight reduction in nodes. I have Ledderhose in both feet as well, but decided not to treat them. They haven't progressed noticably either, but perhaps slightly. No new nodes though. Curiously, I had an interesting effect. Starting at about 1 month after radiation and continuing for about 2-2.5 months for both treatments, my hands periodically felt like the whole hand was tightening and perhaps contracting without any noticable sign of disease progression, but then went away pretty much went away. My hands feel fine now. It's been 6 months since the start of treatment.

dpjcrfsh:

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I was treated on both hands by Dr. S in Oct 2015 and Jan 2016. I would say I'm happy with the results. I had general slow but regular progression prior to the treatment, but it seemingly stopped after that with perhaps slight reduction in nodes. I have Ledderhose in both feet as well, but decided not to treat them. They haven't progressed noticably either, but perhaps slightly. No new nodes though. Curiously, I had an interesting effect. Starting at about 1 month after radiation and continuing for about 2-2.5 months for both treatments, my hands periodically felt like the whole hand was tightening and perhaps contracting without any noticable sign of disease progression, but then went away pretty much went away. My hands feel fine now. It's been 6 months since the start of treatment.

Peacefulbird:

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(1) When you had RT for both hands, was the cost double?

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(3) Did you have full use of your hands during the RTs and during the week or two following RT?

Edited 04/10/16 23:26

Stefan_K.:

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I only had one hand treated but on the rate card I was given the cost for the second hand is 50% of the first. The cost of the second round is also lower as diagnosis has already been done and the time spent with the doctor is shorter.

I was prepared to have both hands treated because of the savings on time and money, but even at the second session the professor thought it was too early. This way I had a direct comparison and knew what were skin changes due to RT and what was in my imagination...
I found the one suggested by the clinic too oily but was very pleased with a little tube of Handsan 5% urea which penetrates much faster. It comes in a small, blue & white tube (30ml) and was more than sufficient for my one hand through both sessions (www.handsan.de). You find it in the local drugmarkets like Budnikowsky, in the bins with the other travel size cosmetics (which have the advantage of going into your hand luggage).