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11/08/2014 17:45
labrickner 
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11/08/2014 17:45
labrickner
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How do you get RT?
Hi! I"m a 49 year old woman and I had Dupuytren's syndrome diagnosed several years ago, after what I thought was just a cyst was removed from my knuckle. At the time, I had no lumps in my palm but was made aware of the signs and symptoms. Now, I not only have a few lumps in my palm, I also have lumps on my arch of my foot (Ledderhose). In researching the very helpful info on this site, I would like to explore radiotherapy, since I'm apparently in the very early stages.
However, I'm at a loss at to whom to see. I can go back the hand specialist that originally diagnosed it, but it appears that nobody in Maryland does RT and many doctors advise against it. Do I contact the RT clinics directly, or must my lumps be diagnosed and "mapped" first? Also, does the hand specialist also deal with the foot issues or is that another appointment?
Please advise.
L.A. in Maryland
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11/08/2014 19:11
spanishbuddha  Administrator
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11/08/2014 19:11
spanishbuddha Administrator
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Re: How do you get RT?
labrickner:
Hi! I"m a 49 year old woman and I had Dupuytren's syndrome diagnosed several years ago, after what I thought was just a cyst was removed from my knuckle. At the time, I had no lumps in my palm but was made aware of the signs and symptoms. Now, I not only have a few lumps in my palm, I also have lumps on my arch of my foot (Ledderhose). In researching the very helpful info on this site, I would like to explore radiotherapy, since I'm apparently in the very early stages.
However, I'm at a loss at to whom to see. I can go back the hand specialist that originally diagnosed it, but it appears that nobody in Maryland does RT and many doctors advise against it. Do I contact the RT clinics directly, or must my lumps be diagnosed and "mapped" first? Also, does the hand specialist also deal with the foot issues or is that another appointment?
Please advise.
L.A. in Maryland
Welcome to the forum labrickner
The easy answer is travel to Hamburg, and many US people do. For US clinics that we are aware of check the treatment page on the site http://www.dupuytren-online.info/radiotherapy_clinics.html. In the past people on here have successfully contacted a radiation centre at an oncology centre near them, armed with information from this site. Then there is the question of insurance or fees. Hopefully some people from the US will chime in here.
RT is only effective during an active proliferation phase, when symptoms are high, nodules are growing, so it is preferable to have the help of a hand specialist with the diagnosis, and not just 'very early stages' since it can go dormant or progress very slowly and not lead on to contracture.
Good luck and come back with more questions.
SB
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11/15/2014 20:35
psyduck 
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11/15/2014 20:35
psyduck
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Re: How do you get RT?
I live in NoVa and called Dr. Elisabeth Weiss at VCU in Richmond directly. I stayed in Richmond for 5 days (twice) to get treatment. There is a hospitality house nearby that you can stay at and only pay a recommended $10/night rate. (You do not have to pay if you cannot afford it.) They also offer transportation to the hospital. Dr. Weiss worked (or studied with...I don't recall) Dr. S (in Germany, who you'll read a lot about on this site).
The staff at VCU was excellent, and I am seeing some reduction in the size of my nodules. Started treatment in August and had second treatment one month ago.
I would highly recommend Dr. Weiss and her staff.
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11/16/2014 00:00
Littlepaw
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11/16/2014 00:00
Littlepaw
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Re: How do you get RT?
Hi L.A.
Definitely start with the resource page for treatment centers. I found my Radonc in Austin there. He did a very thorough exam, much more extensive than any foot specialist I have seen. After determining the treatment area we started quickly. The center got things cleared with my insurance. They use the same protocol as Dr. S uses. My doc spent time at Duke where they have a research relationship with Dr. S, so a lot of people who trained there are familiar with RT. if you cant't go to NJ at least call and see if the doc knows anyone in your area. All these Radonc guys seem to know each other.
Good luck!
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11/25/2014 20:58
puddlediving
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11/25/2014 20:58
puddlediving
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Re: How do you get RT?
I am not near any of the RT centers. The closest possibility is in Toronto, Canada. I live in Western New York and am considering seeking out RT for my hand. I've had LD for 25 years, but am just beginning to develop DD. Is the only way to get RT to go to one of these clinics? There is a cancer treatment center right in Buffalo, capable of RT. I'm also concerned about insurance coverage if I go 'across the border' to Canada. (An issue for my insurance company, I know, but I'd love to hear how others have handled this... whether going to Canada or Germany.)
I'm in the begging stages of looking for treatment. I'd really like to take care of my nodule before it becomes a cord. (my mother has DC more extreme than most of the online photos I've seen, and I don't want my hand to become like hers.) I pointed my mother to this forum, so maybe she'll seek out treatment again also.
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11/26/2014 00:33
Tusk 
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11/26/2014 00:33
Tusk
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Re: How do you get RT?
You would either have to travel to find a radiation oncologist who will treat you, or as some have done, talk to a local radonc and see if they will treat you according to the established protocols (you can get Professor S protocol through this website, generally considered the leading authority in the world on RT for DD/LD).
As was mentioned above, the radoncs who are currently using RT for DD know other radonc docs all over the country and might be willing to talk with one of them in your area.
The pro with local treatment is lower cost, the downside is lack of experience with the disease and treatment protocols.
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