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Advice please re. RT for Dupuytrens, & the rest
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01/13/18 11:12
wach 

Administrator

01/13/18 11:12
wach 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

If I may add my 5 cents: with a contracture of 20-30 degress it is too late for radiotherapy, which applies to fresh & growing nodules and cords only. With such a contrcture you are rather a candidate for NA http://www.dupuytren-online.info/needle_aponeurotomy.html or surgery (fasciectomy). I would not have radiotherapy before NA or before surgery, it might affect wound healing.

Wolfgang

01/13/18 14:09
scumble 
01/13/18 14:09
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

wach:
If I may add my 5 cents: with a contracture of 20-30 degress it is too late for radiotherapy, which applies to fresh & growing nodules and cords only. With such a contrcture you are rather a candidate for NA http://www.dupuytren-online.info/needle_aponeurotomy.html or surgery (fasciectomy). I would not have radiotherapy before NA or before surgery, it might affect wound healing.

Wolfgang
Thanks for this, but yes, I know; I was trying to say that surgery is proposed for the finger and radiotherapy for the rest, but I wonder whether the surgeon isn't a bit too keen and NA would be more advisable at this stage. Thank you for the links which I will examine.

01/19/18 08:24
scumble 
01/19/18 08:24
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

scumble:
wach:
If I may add my 5 cents: with a contracture of 20-30 degress it is too late for radiotherapy, which applies to fresh & growing nodules and cords only. With such a contrcture you are rather a candidate for NA http://www.dupuytren-online.info/needle_aponeurotomy.html or surgery (fasciectomy). I would not have radiotherapy before NA or before surgery, it might affect wound healing.

Wolfgang
Thanks for this, but yes, I know; I was trying to say that surgery is proposed for the finger and radiotherapy for the rest, but I wonder whether the surgeon isn't a bit too keen and NA would be more advisable at this stage. Thank you for the links which I will examine.
I appreciate that my own trouble is far from severe, but wish to know more about RT. Here first is an account of progress in case it's of interest.

A UK doctor I've spoken to turns out to have DD himself and maintains that the four steroid injections to my palm indeed aggravated nodule growth, as any trauma will. He enjoins me (as does general wisdom on this forum) absolutely not to consider surgery now, disdains RT (as I don't; more below), and directed me to Dr. Warwick in Hampshire - details on this site - for CCH in first instance or dermofasciectomy when and if I get to that stage. Warwick impressed me in correspondence and I'll see him when I can. RT not in his purview but he accepts evidence of its efficacy. I attach one of his co-written papers in case it's of help to anyone.

My problem re. RT is that growth is currently active in palm and foot, so other things being equal I'd seek immediate treatment in Germany but can't leave Korea for several months. Oncologists here know the condition but have no experience in treatment. As I say they are conversant with protocol and ready to give it a try. Cost is as in UK (i.e. twice that in Germany) partly because they'll use MRI to determine sites for irradiation. They know that in Europe this isn't always necessary but must follow their own procedure. However, their radiotherapy apparatus is generally calibrated for cancer therapy (higher-energy doses) and lower-energy machines are used only for diagnostic purposes. Negotiations and adaptations have accordingly been made.

It's not that I lack any faith in the Korean doctors; quite the contrary. But one has to be persuaded that any competent radiologist who follows the protocol, without having done it before, will do the job as well as any other. And like many on the forum I have questions for which perhaps no-one can offer a satisfactory answer. I've asked DD radiotherapists in the UK whether the 30% of cases that result in minor skin damage (principally atrophy) are permanent or temporary. They seem non-committal, but I was told that of that 30% about half experience long-term problems. I'd have liked to talk to poor Prof. Seegenschmiedt. I apologize for being tiresome but wonder if those of you in Germany have any advice to add?

Incidentally I also attach a picture of hand with - as I've tried to describe - the isolated cord on intermediate phalange (nothing on proximal phalange), with extruding nodules taking shape of what I think is called a 'super "Y" cord.' Affected middle section of finger is opposite the fork. This is where things began two years ago and I'm well aware that RT will not work there. Nodules on palm now painfully expanding. This arrangement may be perfectly ordinary and if left alone might settle as it is, for all I know. But I'm going for RT in Korea if I can just dispel what doubts remain.

Edited 01/19/18 08:51

Attachment
CCHemergingpracticepatternstreatmentadvances.pdf CCHemergingpracticepatternstreatmentadvances.pdf (7x)

Mime-Type: application/pdf, 1.453 kB

DD in Seoul.jpg DD in Seoul.jpg (18x)

Mime-Type: image/jpeg, 1.860 kB

01/19/18 09:19
spanishbuddha 

Administrator

01/19/18 09:19
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

It’s not clear to me, sorry, what further advice you are seeking? David Warwick is a well known hand surgeon who has participated in conferences on treating DD. I believe he favours Collagenase for moderate contracture, but also performs NA and of course surgery. He would be a good choice to discuss the option to straighten your hand after a physical examination.

It perhaps is preferable to have RT done by radiologists who have treated DD before, just because their experience may be useful as a follow up. But the protocol is well documented, published papers, books, recordings of conference lectures, and I would hope a competent radiologist would be able to study then treat accordingly. There can be some side effects but with the low dose these are usually minimal, and in no way comparable to side effects with the doses used to treat cancer. I myself get dry skin now, worse in winter, and that is several years after RT. To my layman’s eye the rest of the tissue in the irradiated area seems healthy.

Edited 01/19/18 09:22

01/19/18 09:46
Stefan_K. 
01/19/18 09:46
Stefan_K. 

Re: Advice please re. RT for Dupuytrens, & the rest

I have had 2 series of 5 x 3 Gray on most of my right hand, 2 series of 5 x 3 Gray on the pinky of my left hand and am about to have the second series of 5 x 3 Gray on the area between my thumb and index finger on the left hand. I only had a skin reaction about three weeks after the first series on the right hand. The thin skin between fingers reddened and itched a little, as did the palm of the hand. Eventually the skin peeled slightly as part of its natural renewal cycle. The first year that skin was noticeably drier. I moisturized it occasionally for a couple of months. Last year, the second year after the first RT, the skin dryness was very slight and I didn't really pay attention. It doesn't bother or worry me. Others have occasionally reported stronger skin reaction, but that seems to be the exception. People who easily get moist hands may actually find the effect beneficial... As it stands, I would be more worried about getting into a traffic accident on the way to or from the treatment than about the treatment itself.

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]

01/19/18 11:40
scumble 
01/19/18 11:40
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
It’s not clear to me, sorry, what further advice you are seeking? David Warwick is a well known hand surgeon who has participated in conferences on treating DD. I believe he favours Collagenase for moderate contracture, but also performs NA and of course surgery. He would be a good choice to discuss the option to straighten your hand after a physical examination.

It perhaps is preferable to have RT done by radiologists who have treated DD before, just because their experience may be useful as a follow up. But the protocol is well documented, published papers, books, recordings of conference lectures, and I would hope a competent radiologist would be able to study then treat accordingly. There can be some side effects but with the low dose these are usually minimal, and in no way comparable to side effects with the doses used to treat cancer. I myself get dry skin now, worse in winter, and that is several years after RT. To my layman’s eye the rest of the tissue in the irradiated area seems healthy.
Sorry not to be clear - I was thinking particularly of RT side effects, and your answer is extremely helpful. Likewise your remarks re. Mr. Warwick. Thanks again.

01/19/18 11:55
scumble 
01/19/18 11:55
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

All very clear and thanks for putting this in perspective. Traffic accidents a little more frequent here!

01/30/18 03:10
scumble 
01/30/18 03:10
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

This is an ancillary matter but I just wonder why, in those regions where specialist surgeons are not accessible for locating nodules to be irradiated, some oncologists favour MRI for this purpose while others prefer to use CT. There are some posts in the archive comparing the two but they don't seem very informative. If we assume that there is no financial incentive involved, then - in view of the great difference in cost - why should different radiologists prefer different procedures?

01/30/18 08:04
wach 

Administrator

01/30/18 08:04
wach 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Nodules can be palpated, no need for MRI or CT, the latter including considerable radiation exposure.

scumble:
This is an ancillary matter but I just wonder why, in those regions where specialist surgeons are not accessible for locating nodules to be irradiated, some oncologists favour MRI for this purpose while others prefer to use CT. There are some posts in the archive comparing the two but they don't seem very informative. If we assume that there is no financial incentive involved, then - in view of the great difference in cost - why should different radiologists prefer different procedures?

01/30/18 08:34
spanishbuddha 

Administrator

01/30/18 08:34
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

scumble:
This is an ancillary matter but I just wonder why, in those regions where specialist surgeons are not accessible for locating nodules to be irradiated, some oncologists favour MRI for this purpose while others prefer to use CT. There are some posts in the archive comparing the two but they don't seem very informative. If we assume that there is no financial incentive involved, then - in view of the great difference in cost - why should different radiologists prefer different procedures?
MRI seems popular in the US, perhaps due to the litigious society, and inexperience of Dr? I have heard of ultrasound being used on the feet to show the depth of fibromas.

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