| Lost password
1 user onlineYou are not loggend in.  Login
My NY Surgeon / Radiologist Visit
 1
 1
02/09/2009 03:05
myway53 
02/09/2009 03:05
myway53 
My NY Surgeon / Radiologist Visit

I was diagnosed with bilateral dups in Dec 2008 and I'm still muddling through this disease. I met with 2 doctors this past week. My sister took notes:
1st Doctor: Surgeon from NY Hosp Special Surgery:
"Chances are this won't progress but if it does, we can get you better" "Surgery can sometimes "turn on" the disease so you only operate when and if the disease becomes inconvenient (function is impaired). "We only operate when we reach a 30 degree extension impairment, and you are at zero. "After a surgery (if needed) the contracture may re-occur in 40% of patients, but of those 40% only 10% need surgery as the decree of recurrence is minimal."

On N/A: "I don't like NA as they are operating blind--surgeon can't see if they are hitting a nerve and can cause nerve damage"
On Collagenese: Currently they have a trial going on, but it's closed to new patients. We are putting collagen in people and I don't like it as we don't know if the collagen can travel and clog your heart valves or other organs. Until long term effects are known, it's similar to the drugs that have been on the market, then recalled when people start having problems from them----I'm more conservative and would rather see what happens.
"As to radiation, many people who receive that dose of radiation will have some type of complication." Come back in 4 months unless you see a big change, then come back as soon as you need to.

2nd Doctor is a radiological oncologist who only treats Dupuytren's because no one else in NY does. He said it is like an orphaned disease. His real love is oncology. As he examined her hands he said "good, there's not a lot going on here"

As to the radiation treatment "there is no conclusive evidence that it works. There are no randomized trials. There is a trial that shows low vs high dose of radiation, and it showed no difference, so how do we know it's working?" "The dose that has been given to patients with this condition is 1/2 the dose a cancer patient gets....but, a cancer patient faces a life and death issue." After he reviewed Barbara's info he said "I wouldn't do anything unless it progresses".

He wanted to know why the Germans haven't had any papers published on long term affects since 2001 as they have been doing it. His own patients never came for follow ups so he doesn't know the long term effects.

I can't remember which doctor said it, but one of them said that "although it's true that the radiation can minimize the disease for you now, what if the radiation causes hand cancer. Guess the bottom line seemed to be that we wait and see....

I'd appreciate all feedback. I was pressuring myself to rush into R/T - I am still very seriously considering this option but I am also trying to wait a few months & adjust to this diagnosis & see the rate of progression. I'm hoping the collagenese becomes available soon & might be an option for me.
Thanks for all your continued support.
Barbara NY

02/09/2009 14:33
wach 

Administrator

02/09/2009 14:33
wach 

Administrator

Re: My NY Surgeon / Radiologist Visit

Hi Barbara, a few comments that might help clarifying the efffect of NA, collagenase, and radiotherapy. Maybe your doctors might want to visit our web site, they will find a wealth of information and it might answer some of their questions, too.

NA: the rate of nerve damage with NA is about half of what is observed with classical surgery, see http://www.dupuytren-online.info/NA_side_effects.html and http://www.dupuytren-online.info/surgery...s_denkler_2.htm

collagenase: it is not collagen that is injected but an enzyme nahmed collagenase that dissolves collagen ... see http://www.dupuytren-online.info/dupuytren_collagenase.html

radiotherapy: most recent publishing: Seegenschmiedt et al. "Radiotherapy for Non-Malignant Disorders" (Springer, 2008). See also http://www.dupuytren-online.info/radioth...literature.html. Specifically on long term effects and a comparison with a control group which clearly demonstrates the positive effect of radiotherapy see http://www.dupuytren-online.info/M-Dupuy...py_Internet.ppt (published 2006). Both publications are in English, so my guess is that your doctors just haven't read anything about that subject since 2001. With regard to "causing hand cancer": world-wide not a single case of hand cancer caused by radiotherapy of Dupuytren's has been reported so far in the literature. Have they seen one or are they talking off their head?

Wolfgang

Quote:



...
On N/A: "I don't like NA as they are operating blind--surgeon can't see if they are hitting a nerve and can cause nerve damage" On Collagenese: Currently they have a trial going on, but it's closed to new patients. We are putting collagen in people and I don't like it as we don't know if the collagen can travel and clog your heart valves or other organs. Until long term effects are known, it's similar to the drugs that have been on the market, then recalled when people start having problems from them ...

... radiation treatment "there is no conclusive evidence that it works. There are no randomized trials. There is a trial that shows low vs high dose of radiation, and it showed no difference, so how do we know it's working?" "The dose that has been given to patients with this condition is 1/2 the dose a cancer patient gets....but, a cancer patient faces a life and death issue." ...
He wanted to know why the Germans haven't had any papers published on long term affects since 2001 as they have been doing it. His own patients never came for follow ups so he doesn't know the long term effects.

I can't remember which doctor said it, but one of them said that "


Edited 02/09/09 16:40

02/10/2009 01:31
myway53 
02/10/2009 01:31
myway53 
Re: My NY Surgeon / Radiologist Visit

Wolfgang,
Thanks so very much for your insightful information. I've been communicating with Trevor since viewing a photo of his hand (which looks a lot like mine right now) and he's been so very helpful to me. He suggested that I post a synopses of my doctors visits in the hopes of getting some feedback from Wolfgang and Newman. I appreciate any and all information that comes my way. Regarding the most recent publishing: Seegenschmiedt et al. "Radiotherapy for Non-Malignant Disorders" is it worthwhile for me to read this book or is it more geared to medical professionals?

I am in such a confused state right now. I guess I still haven't fully accepted this condition and I'm so afraid of making the wrong treatment choice. The open hand surgery is totally not an option I'll consider. For me I feel at this point it would either be R/T or try to wait for the collagense but I don't know how long that drug might take to be marketed. I read something on this forum that now mentions 2010. I guess I'd also consider N/A but I don't have constricture YET. I know this thing is so random and yet I feel that each day I'm showing additional progression. The first bumps I noticed were in October 2008 with a confirmed diagnosis in Dec. 2008. I don't know if mine is a fast progression since I have no basis of comparison.

Anyway, it is therapeutic just to post here and vent it out. Thanks all for listening.
Barbara NYC

02/10/2009 04:59
newman 
02/10/2009 04:59
newman 

Re: My NY Surgeon / Radiologist Visit

Australia Calling.Hi Barbara, With regards to the book Radiotherapy for Non-Malignant Disorders I actually purchased the book in Germany .The chapters referring to Dupuytren /Ledderhose and the others relating to radiotherapy are written so that anyone of normal intelligence , not having a medical background can easily understand it. Try the library. New it cost $200 Euros, but on Amazon I noted a number of 2nd hand books at reduced prices in the US. I have a Cinical Investigation from Prof Seegenschmiedt published in 2001 but I need his permission to reprint. I have sent him an e-mail for his permission. Should he allow I can send you a pdf.file .Regards.

Edited 02/10/09 07:01

02/10/2009 18:59
myway53 
02/10/2009 18:59
myway53 
Re: My NY Surgeon / Radiologist Visit

Newman,
Thanks for the book info - I'm heading to the library right now. If I can't find it - I'll try Amazon.com.

Appreciate you help.

Barbara

02/27/2009 19:31
bstenman 
02/27/2009 19:31
bstenman 
Re: My NY Surgeon / Radiologist Visit

X-ray treatment is most effective at the early stages of Dupuytren's so I would not delay your treatment. I would not trust the opinion of the doctor as to how far the disease has progressed. I had a NA procedure performed in the USA and the doctor was only going to perform the procedure on one hand but I had him do it on a minor contracture on my right hand as well. Two months later I was in Essen, Germany having my hands evaluated/palpated by Professor Dr. Seegenschmiedt and he told me that the disease was quite advanced in my right hand, noticeable in terms of the lack of suppleness of my hands but not yet visible as contractures or nodules. So I had X-ray treatments performed on both hands.

X-ray treatment for cancer is done both at much higher dosages and also to much greater depths. The X-ray equipment is able to focus the X-rays to limit the depth of penetration to the dermal layers and minimize the radiation received by the muscles, cartlilage, and bones. Contrast that to radiating a tumor on an internal organ where the radiation is deeper and for a greater duration. Part of the reason for splitting the Dupuytren's treatments into two batches is to give the body time to recover from the radiation, which it is capable of doing.

When I had my second round of treatments performed in the USA (at 20 times the cost of the first round in Germany) the physician first had a CAT scan done to be able to do an exact mapping of my hands for the radiating equipment to be done using a linear accelerator to minimize the amount of tissue that would receive the radiation while treating the fascia tissue.

Having seen first hand the difference between the effectiveness of the X-ray treatment on my left hand which had severe contractures and my right hand that did not I firmly believe that had I been treated 8 months sooner my left hand would be in much better shape and that delaying the XRT greatly reduced the effectiveness of the treatment. Cancers that are treated early there is in general a 90% survival rate and for cancers detected and treated late there is a 10% overall survival rate, so it should not be surprising that early treatment of Dupuytren's which also involves cell mutation is more effective as well.

02/27/2009 22:45
Myway53

not registered

02/27/2009 22:45
Myway53

not registered

Re: My NY Surgeon / Radiologist Visit

Where in the US did you have your second radiation ?

 1
 1
radiotherapy   Surgery   Seegenschmiedt   effectiveness   radiation   Surgeon   blind--surgeon   Investigation   disease   patients   Dupuytren   Non-Malignant   professionals   collagenase   Collagenese   dupuytren-online   communicating   treatment   contractures   Radiologist