I am a newbie on the forum, but already impressed by the level of knowledge and professionalism shared on the threads I have read.
I am based in UK and have diagnosed Dupuytren's Contracture in both hands and diagnosed Lederhose disease in both feet - aren't I a lucky guy, almost the full set (no sign of Peyronie's...., fingers crossed if you will pardon the insensitivity)?
I understand the UK approach, in terms of free medical treatment for DC, is to wait until my fingers bend over, then attempt surgical treatments.
As I heard that Radiation Therapy was available privately, I found a Dr Shaffer (via Gary Manley of the UK Dupuytrens Society - and a word of thanks to Gary for huge reassurance when I first found I had the diseases...)
I have completed my RT, with two sets of treatment for each limb-end (each set of treatment consisting of a 'burst' of radiation, then a 12 week wait, then another 'burst'). So far so good - things seemed to have sort of stabilised and my lumps are only slowly growing...
My Question is:
UK seems to limit RT to two sets of treatment - I presume to limit the chance of suffering side-effects... I have seen no side effects of the RT to date..
Is anyone aware if this is a general limitation, or is it possible to get more RT in different countries?

Thanks in advance!

G

In the US there are reports of Radiologists performing a full retreatment, of treated areas, after a period of a couple of years or so, a total of 60Gy. These are patient stories, and their veracity and the effectiveness of the retreatment is unknown.

However since you mention Dr Shaffer in the UK, he has published his own perspective on this here https://www.thedupuytrenspractice.com/re...erhose-disease/

spanishbuddha:

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In the US there are reports of Radiologists performing a full retreatment, of treated areas, after a period of a couple of years or so, a total of 60Gy. These are patient stories, and their veracity and the effectiveness of the retreatment is unknown.

However since you mention Dr Shaffer in the UK, he has published his own perspective on this here https://www.thedupuytrenspractice.com/re...erhose-disease/

Re-Treatment of Dupuytren or Ledderhose Disease after Radiotherapy

Dear Graham

We should exactly know where you have progressive disease after your previous radiotherapy course of 30Gy.

In my long-term experience with over 1000 patients radiotherapy re-treatment after previous radiotherapy was a rare but possible solution under certain conditions:

(1) there should be a proven clinical progression of the disease, i.e. new nodules or cords, without a major functional deficit (maximum 10 - 30 degree extension deficit of digits),that means an early stage of the disease.

(2) proven clinical progression of disease outside the previously irradiated areas can be treated with up to 30Gy, when there is no overlap with the previous radiotherapy fields.

(3) proven clinical progression of disease inside the previously irradiated areas can be treated with additional 15Gy if there is a discrete region of flare-up (e.g. a new nodule) and the skin conditions are not compromised (e.g. severe dryness or fibrosis after radiotherapy). Thus 45 Gy is the upper dose limit in selected cases. Careful documentation of all treatment fields is an essential precondition

In my experience several patients had a good benefit from the 3rd radiotherapy series mainly by stop of further progression of the disease locally. I have never applied a 4th radiotherapy series which would mean a dose of 60Gy.

Best regards and wishes, Prof. Seegenschmiedt

Edited 01/25/19 00:45

If I have new pain in my fingers and thumbs a month after my first round of RT of 15 gys total radiation so far,
and my fingers and thumb were not included in my first radiation set of 5 days, should radiation area be expanded in second set? and if so should the third set catch up the newly radiated fingers and thumb so all is 30 gy total? I would guess it is then a decision if you have a third set to either re radiate first field or block off first field. no new nodules outside of field, only new cords that i can perhaps feel going up to pinky and ring and middle and new thumb cord.... Due for next round end of May and RO never had this happen before.