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Radiotherapy in Germany
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10/31/2009 13:06
lori 
10/31/2009 13:06
lori 
Re: Radiotherapy in Germany

Claire,

I don't have the itchiness feeling , mine is like a flutter. I could tell mine was growing because of the dimpling and puckering. I stretched my arms straight out at eye level and in good light looked at my palms and compared them. I made notice of where the nodule was in relation to my other hand and monitored if dimpling or drawing was occuring. I also could tell by picking up a gallon of water. Was it harder than the last time, did it hurt, did I feel a strain...all those kind of questions. I logged them into a journal on a weekly basis, that way I would not forget. This worked for me in my decision process.

Good luck,

Lori

11/01/2009 13:14
ClaireB777 
11/01/2009 13:14
ClaireB777 
Re: Radiotherapy in Germany

Thank you Lori
The journal is a really good idea.
Claire

11/11/2009 18:08
ClaireB777 
11/11/2009 18:08
ClaireB777 
Re: Radiotherapy in Germany

Just an aside... I had several harmless lumps removed last week by a plastic surgeon who turned out (co-incidentally) to be a hand surgeon.

We were chatting about Dupuytren's and he implored me not to have radiation treatment.

He said that as a plastic surgeon, he sees the results which can be scarring and fibrosis (think that's the word he used)... Would that be if the doses are too high?

Thanks

11/11/2009 18:28
flojo 
11/11/2009 18:28
flojo 
Re: Radiotherapy in Germany

From my experience, nothing like that has happened. I have seen nothing that suggested those as side effects, and you can believe that I researched everything I could. Dryness of the skin in the radiated area may need moisturizers and it clears up in a few weeks if it is a problem at all. The other thing that is a real concern is <2% in 25 years increased risk of cancer and that is ONLY on the radiated area, not transferred to any other part of the body. I consider that degree of risk is very small, and for me the great improvement in my Dups was well worth it.

What the surgeon told you doesn't make any sense to me, but I'll always be watching to see if any more information comes to light.

11/11/2009 20:01
wach 

Administrator

11/11/2009 20:01
wach 

Administrator

Side effects of radiotherapy

You need to understand that radiotherapy does change the tissue. If it wouldn't do this it wouldn't help. Its effect is not specific enough to just destroy the Dupuytren's nodule and not affect the healthy tissue. Therefore you must expect a change of the radiated tissue. The question is whether the change is so dramatic that e.g. you develop cancer or a severe fibrosis or you cannot have surgery afterwards. I would like to refer you to the book by Seegenschmiedt et al. on "Radiotherapy for Non-Malignant Disorders". The chapter on Dupuytren's is available online , see the link on http://www.dupuytren-online.info/radioth...literature.html (the link unfortunately doesn't fit into this post).

Seegenschmiedt writes in the section on side effects on page 179
"None of the RT series using single doses as high as 10 Gy or total doses up to 42 Gy have reported long-term severe radiogenic side effects or tumor induction within the treatment portal; the applied dose levels are much too low to reach dose levels that may possibly induce severe fibrosis ..."

I guess you need to look at the details and your hand surgeon might have seen or heard of cases where the dose was higher than for Dupuytren's treatment. Nevertheless for safety reasons it absolutely makes sense to minimize the dose and minimize the exposed tissue. That's the reason why I personally would object radiating a full hand or having RT immediately after NA. The target is not well defined and thus the effect dubious but that's another subject.

Wolfgang

Edited 11/11/09 22:03

11/11/2009 20:50
flojo 
11/11/2009 20:50
flojo 
Re: Radiotherapy in Germany

I am on the conservative side with RT regarding dosage and area radiated. I had RT where nodules were continuing to form and cords were continuing to appear but not yet contracting. Minimal margins were around the noduled area were radiated. I clearly had active Dupuytren's as noted from sensations in the palm tissue as well as visual and palpation examination.

To radiate solely as a preventative does not fit the "active Dupuytren's" needed for effective RT. My other hand does not indicate active Dupuytren's at this time. If so, it is very slow so I don't think it is active, but I'm watching it like a hawk to see if it takes off with symptoms of being active.

11/12/2009 06:19
guest

not registered

11/12/2009 06:19
guest

not registered

confused after reading this, can you give an opinion?

I apologize for the length of this posting, but I wanted to be complete so that any responder will understand my situation.

I was planning to have radiation therapy and just read these very informative postings which have left me confused. I would appreciate your opinion as to whether or not my situation warrants radiation. There is no one in my area that I can consult and would be grateful if Wolfgang or others who are very familiar with radiation could answer. I know this is just an opinion from a distance, but it would help me. Here, radiation oncologists are not as exacting as in Germany and radiation for Dupuytren's is new and even controversial among doctors--and so I'm sure that if I request I will have it--but as you point out, there are risks, and I wouldn't want to have this done for no reason.

I have a 4mm flat nodule directly on the PIP joint of the middle finger of one hand. It appeared 14 months ago. I've had it injected with kenalog a few times, hoping it would disappear, but it has not. Sometimes I've thought it has shrunk due to the kenalog, but other times it looks like it has not.

From looking at photos of 6 months ago I don't think the bulk of the nodule has grown appreciably, it is still pretty flat, but it looks like it has progressed about 1mm or so in its lower right corner to touch the bottom PIP joint line--it didn't do this 6 months ago. And what was a small 1-2 mm area that branched upward and just over the upper PIP joint line--this has become more definite with deeper "grooves" on either side. It looks like it will become a small cord--but it is not yet really palpable--it just looks like it. Below the PIP joint line what used to be a 2.5 mm fullness of tissue even 1 year ago has become 3.5mm in the last 6 months--it only extends down 4mm from the joint line but looks even more now like the beginning of a cord. What has become more apparent also is that the tissue directly below the PIP joint line is more fluctuant for a distance of about 5mm, making me think that the fascia under it has become abnormal--perhaps this will also become a cord. Also there is a band on the side of the finger--still on the joint that touches the nodule and it has become rough--like the underlying fascia has become diseased and sticks to it. This just appeared in the last 6 months.

I don't have any itching, but if I "play" with the nodule much, then I have some burning sensations and a kind of deeper "boring"-type of pain.

So all in all, I think there has been some progress in the last 6 months but it has been slight. I can imagine that in a year or so all that I described will become real cords and then contraction and so I would like to pursue radiation but I don't want to hurt myself unnecessarily. Maybe the nodule has reached the stage where it doesn't grow, but yet produces cord leading to contraction.

The other hand has a real contraction an is not candidate for radiation.

Thank you for your help.

11/12/2009 14:52
flojo 
11/12/2009 14:52
flojo 
Re: Radiotherapy in Germany

I would personally consider RT for what you describe. By your description, it sounds like Dups is active and has not yet started to contract. That is when they recommend getting RT.

11/12/2009 20:31
ClaireB777 
11/12/2009 20:31
ClaireB777 
Re: Radiotherapy in Germany

Wolfgang, thankyou for your reply, I shall read the excerpt you have referred to...

11/15/2009 16:21
LubaM 
11/15/2009 16:21
LubaM 
Re: Radiotherapy in Germany

Wolfgang, in your post of 11/11/09 you say:
_________________________________________________________________________________
That's the reason why I personally would object radiating a full hand or having RT immediately after NA. The target is not well defined and thus the effect dubious but that's another subject.
__________________________________________________________________________________

I am currently having RT with Dr. T in Scripps LaJolla for my left hand (multiple active nodules and one small cord)....AND I am considering RT for my right hand AFTER I do NA on pinkie (for the second time) where I also have moderate amount of nodules. Here's my dilema....the nodules on right hand have NOT progressed for over a year, even though the contraction of the pinkie has increased so much that it has now developed a boutonierre on the DIP joint, there is no visible cord pulling on the pinkie.

Dr. T. suggests doing RT immediately after I finish NA on that finger....other suggestions here in forum are only doing RT if there is active progression in nodules...I'm confused....

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