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When is it too early for Radiotherapy ?
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08/18/2012 22:36
Vikingorigins 
08/18/2012 22:36
Vikingorigins 

When is it too early for Radiotherapy ?

Hi, I am back from getting RT in Hamburg and got the first treatment for the half of my left hand. The right hand is affected but more recently, like the feet and those 3 other members are under observation for now. I should say that the disease progressed very rapidly, spread in all members and this frightens me a lot. Dr. S says the disease might stop for non treated members and areas after the first RT in the left hand. It seems that this does happen. I appreciate very much his prudence.
It makes me think that if the disease progresses with nodules in the non-treated hand, or in non-treated areas of the treated hand, I can always get RT for new areas. The downside is unaesthetic nodules with which I can easily live.
The feet are different though. If RT could prevent new nodules even to appear that would be better because the nodules can seriously limit the function and be very painful while walking. Earlier RT for LD is a lot more appealing.
I guess the questioning for which I would like some feedback from this forum is this one: once we know that DD is in both hands, and we have itching, pain and burning in the feet, is it still too early to irradiate the foot ? Why ? Is it a because RT would not work yet ? or is it a ethical question not to irradiate a part where nodules are not already there ?
Thank you for your thoughts.

08/19/2012 02:16
GaryBall 
08/19/2012 02:16
GaryBall 
Re: When is it too early for Radiotherapy ?

Vikingorigins:
Hi, I am back from getting RT in Hamburg and got the first treatment for the half of my left hand. The right hand is affected but more recently, like the feet and those 3 other members are under observation for now. I should say that the disease progressed very rapidly, spread in all members and this frightens me a lot. Dr. S says the disease might stop for non treated members and areas after the first RT in the left hand. It seems that this does happen. I appreciate very much his prudence.
It makes me think that if the disease progresses with nodules in the non-treated hand, or in non-treated areas of the treated hand, I can always get RT for new areas. The downside is unaesthetic nodules with which I can easily live.
The feet are different though. If RT could prevent new nodules even to appear that would be better because the nodules can seriously limit the function and be very painful while walking. Earlier RT for LD is a lot more appealing.
I guess the questioning for which I would like some feedback from this forum is this one: once we know that DD is in both hands, and we have itching, pain and burning in the feet, is it still too early to irradiate the foot ? Why ? Is it a because RT would not work yet ? or is it a ethical question not to irradiate a part where nodules are not already there ?
Thank you for your thoughts.


Hi Vikingorigins,

I am also a patient of prof S. He treated my feet and diagnosed dups in January. He was not comfortable with treating my my hands. His opinion was that they were not ready......he uses a scoring system for making a case for RT....

Although I had hoped to have my hands treated I had to accept that the Profs. Assessment had to be listened to....my hands were simply not scoring the points for RT.....so I have used my knowledge gained primarily from this forum to constantly assess the condition and perhaps more importantly.....to try and keep it in check.

Over the last 4 months the dups seems to be low on the activity scale.....and of course this could be the case for years.....it may also be down to eating a different diet and managing my hands in a far more conservative way....Thanks to the forum....

To answer part of your question I am guessing that the Prof is sticking to the principles of best practice.....it would be easy for him to radiate all of us that were sold on RT and take our money....but......timing is important for the best outcome for RT.

I would suggest that it is great position to be in......to know you have the condition......and have a good treatment
option available if things start to progress......

Gazza

08/19/2012 05:13
wach 

Administrator

08/19/2012 05:13
wach 

Administrator

Re: When is it too early for Radiotherapy ?

I guess the rational goes like this: RT is not preventive, i.e. if you irradiate a foot/hand it won't avoid L/D for the future. But you then had your life time dose in that area and when you later develop a nodule there you can't RT it anymore. But having said this, nobody ever researched the effect of such very early irradiation either. Maybe another issue is that itching or tension are not a clear sign of Ledderhose. You need to be sure what you are treating.

Wolfgang

Vikingorigins:
...
I guess the questioning for which I would like some feedback from this forum is this one: once we know that DD is in both hands, and we have itching, pain and burning in the feet, is it still too early to irradiate the foot ? Why ? Is it a because RT would not work yet ? or is it a ethical question not to irradiate a part where nodules are not already there ?
Thank you for your thoughts.

08/19/2012 10:35
Lanod 
08/19/2012 10:35
Lanod 
Re: When is it too early for Radiotherapy ?

In the recent book on Dupuytrens ( can be read online:

http://www.springerlink.com/content/978-...6312&page=1 )

on pages 351 and 352 Prof. Seegenschmiedt outlines the biological basis for radiation treatment of DD and LD. He clearly needs to believe that highly proliferating fibroblasts exist on the target site, since such fibroblasts (and associated myofibroblasts, growth factors etc.) are the predominant radiosensitive targets. Thus if the disease progression seems to be dormant for some time, radiation will not be effective as there is not evidence of high proliferation of fibroblasts. Likewise, I assume, is very early stage DD, if the disease is not yet showing evidence of high proliferation (e.g. a nodule is established and is growing) then biological target is not yet ready to be ‘attacked’ by the ionizing radiation.

At least this seems to the theory from my understanding.

08/19/2012 10:47
Lanod 
08/19/2012 10:47
Lanod 
Re: When is it too early for Radiotherapy ?

Hello Gazza,

In an earlier very informative email re. your consultation in Hamburg for LD, you say that you did not know you had DD in your hands and yet Prof. S. was able to deduce in his examination that you indeed had DD in both hands - with multiple nodules and cords in each hand.

I am wondering how your hands could have progressed that far without you noticing?
Can you advise: once Prof. S. had confirmed this status – could you then feel the nodules and cords yourself – or was the palpable tissue so subtle that only an expert could detect this? Have you any guidance/advise for self examination of the hand for such early stage DD?

Wishing you well.

Lanod

08/19/2012 14:46
Larry 
08/19/2012 14:46
Larry 
Re: When is it too early for Radiotherapy ?

This an excellent discussion and it hits exactly where RT should not be applied:

TOO EARLY

--> No progression over the last 6 - 12 months
--> No palpable nodules or cords, just "symptoms"
--> No function deficit : Hands --> no limitation of stretching the fingers;
Feet --> No walking difficulties

TOO LATE

--> Nodules and Cords have a "very hard" consistency (Prof. Seegenschmiedt uses a 4-grade scale)
--> Function deficit is advanced --> fingers cannot be stretsched completely (about 30°)


I got both feet irradiated first ; one was already operated and did recur within 4 months; at the same time also early stage Dup's was diagnosed in both hands by Prof. S., but he didn't want to treat them unless they became "active" which occured for the right hand after an injury which led to progression and RT of my right hand 4 years after the RT of both feet; the left hand is still in a "stable condition" with a few soft nodules but without apllied RT. If it becomes "active" I can still go and get RT at Hamburg as I am living in Germany ...

I think the prudence of selecting the "right time" for RT is clearly on the Prof's side, as he has seen hundreds if not even more than thousand hands for evaluation in the past two decades:

I would strongly believe the recommendation of Prof. Seegenschmiedt and stay away from any type of "prophylactic RT" without evidence of disease activity!

LARRY

Edited 08/19/12 17:50

08/19/2012 22:21
Vikingorigins 
08/19/2012 22:21
Vikingorigins 

Re: When is it too early for Radiotherapy ?

Thank you all for your comments and answers. I have a complete trust in prof S experience and judgment. I just wanted to understand. I agree i am in a good position with non invasive options. And maybe, the opportunity to learn German, why not :-)

08/19/2012 22:42
cindy850 
08/19/2012 22:42
cindy850 
Re: When is it too early for Radiotherapy ?

Are you saying that once you have had one area on hand or foot with RT you CANNOT have it again in the same spot?

08/20/2012 01:07
GaryBall 
08/20/2012 01:07
GaryBall 
Re: When is it too early for Radiotherapy ?

Lanod:
Hello Gazza,

In an earlier very informative email re. your consultation in Hamburg for LD, you say that you did not know you had DD in your hands and yet Prof. S. was able to deduce in his examination that you indeed had DD in both hands - with multiple nodules and cords in each hand.

I am wondering how your hands could have progressed that far without you noticing?
Can you advise: once Prof. S. had confirmed this status – could you then feel the nodules and cords yourself – or was the palpable tissue so subtle that only an expert could detect this? Have you any guidance/advise for self examination of the hand for such early stage DD?

Wishing you well.

Lanod

Hi lanod

Great question..

For many years I experienced a sore, fatigued feeling in my feet.....particularly after or during exercise....then I noticed nodules developing and eventually was diagnosed with LD in both feet.....I suspected dups developing because I had similar sensations in my hands.....I could nt really palpitate the nodules as they are small and at the ....tomato stage.....in their development.....

Prof S. Diagnosed active dups in literally seconds......siting a thickening and hardening of tissue in my web.....he detected a number of nodules and cords.....and also provided an observation of different coloring between my hands and his healthy ones.....he also said that the web typically becomes more V shaped between the fingers in dup patients....healthy hands are usually U shaped......

I suspect....like many before me.....dups patients would have no idea that they have issues with their hands until symptoms start progressing......I feel fortunate that I am now able to palpate and assess my condition regularly.....without Prof S. Consultation I would be almost certainly none the wiser of my condition.....this is why I strongly recommend experienced and contscientous practitioners for treatment.....I live in NZ.....I have nt met anyone here who I feel would be really on to this condition....

Gazza

08/24/2012 23:27
Vikingorigins 
08/24/2012 23:27
Vikingorigins 

Re: When is it too early for Radiotherapy ?

It would be interesting to see, in cases where the disease has progressed after RT, whether new nodules appeared inside irradiated areas or outside. If it is always outside, it would support some sort of preventive effect of RT.

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‘attacked’   recommendation   Vikingorigins   non-treated   proliferation   prophylactically   radiosensitive   treated   examination   Seegenschmiedt   progressed   disease   myofibroblasts   condition   documentation   nodules   progression   Radiotherapy   irradiate   consultation