A have a couple questions: 1. Has anyone had experience with radiation therapy with Dr. Pauling Chang, of Palo Alto Medical Foundation in Palo Alto, CA--he is listed on this website. 2. Has anyone had experience with Dr. Snead at UCSF Med Center? 3. How about Dr. Alex Gottschalk at the UCSF Mt. Zion campus/Cancer Center, 1600 Divisadero. The new patient scheduling person is at (415) 353-9807. 4. Should one have radiation therapy before NA or after? Before cortisone-- or does it matter. 5. What are the pros and cons-- yur thoughts and opinions-- of getting RT in the US vs. Europe where they have more experience and what is the risk if I'm at stage 1 or 2 rather than 0 or 0/1 which is what is recommended for RT?
I had NA in 2004, collagenase in 2007 and a month ago another NA procedure. My DC is progressing so fast I can almost see the daily changes in the 4 weeks since my NA and also in my other hand. I'm going to get a cortisone shot next week in hopes that it will soften some of the nodules remaining my right hand. Once the right hand has healed, I need to have even more extensive NA on my left hand and then want to see if there's anything that will help slow down the recurrence.
I'd really appreciate any information and advice. Thanks very much.
I can not advise about the clinics as I am on the east coast. But mine, like yours looked like I could see it growing on a daily basis. Mine is just a nodule and cord but developed the nodule and 4-5 inch cord and dimpling within a few months. I chose the cortisone shot to hopefully slow down the growth and pain so I could make an intelligent decision. It worked. It did not soften it but it did reduce the size of the nodule and cord and stopped the growth. I had the shot April 7 and started radiation in July and finish the radiation next week. I do not have any contracture.
I had radiation with Dr. Pauling Chang about a month ago. I highly recommend him. I was his first Dupuytren's patient but he did his research and has lots of experience treating keloid scar tissue which is similar to Dupuytren's.
As far as if treatment will work with contracture already occuring, I don't know. Like you said, the literature says not so much. I don't know if Dr. Chang would know the answer to whether radiation would be effective after contracture since he has just begun to do Dupuytren's treatment. Perhaps Germany or someone that has much more experience could answer that question on whether it is even worth it to have radiation? My understanding is that it is effective when the Dupuytren's is growing which it sure sounds like it is in your case. I thought tht some said that contracture and nodes were different - and that the radiation was more effective on the node part of Dupuytren's?
Wach said: Re: Radiation therapy and Cortisone injections. The odds are bad that radiating cords is of much value. It works best on fast growing nodules. A combination with NA doesn't make much sense to me (I know others have different opinion on that).
And if I have both cords and fast growing nodules, is there any reason it won't work on the nodules?
My experience with Dr. Alex Gottschalk at UCSF is this: he won't treat me because the average age of his patients is 60, and I'm 26. He also says they normally treat people who already have contracture, and since I don't this is another reason he didn't recommend RT.
The feedback I got from Dr. Chang at Palo Alto and from Dr. Weiss in Virginia was completely opposite to this.
I have had my first session of radiation with Dr. Chang and will go in for my second week on Oct. 19. The main radiation studies appear to have been done by Professor Seegenschmiedt in Germany and I believe that they indicate that radiation is effective at its early stages - e.g. nodules only, nodules plus cords, but definitely no contraction.