Guidance on packet for physicians |
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07/27/2012 13:46
MerryMom
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07/27/2012 13:46
MerryMom
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Guidance on packet for physicians
I have found two local Connecticut doctors who asked me to put together some information on radiation for Dupuytren's. One is a hand surgeon and one is a pediatrician (whose nurse has early DD). Was hoping to get guidance on what I should include in an information kit. Don't want to overwhelm them, but want to include some solid facts.
I am one week out from my final week of RT in Virginia. Will post about my experience when I'm back in typing condition.
Appreciate any guidance/links to information that those of you with an abundance of knowledge can provide. Would love to spark interest in RT here in the Northeast.
Thanks! Amy
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07/27/2012 16:38
Tusk
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07/27/2012 16:38
Tusk
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Re: Guidance on packet for physicians
To clarify, the post above helps because they come from a hand surgeon. I would say 99+% of hand surgeons would be against radiation because in the USA they have absolutely nothing in their training or experience that tells them RT might help with DD.
There is plenty of other info out there that would help your hand surgeon.
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07/28/2012 04:42
flojo
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07/28/2012 04:42
flojo
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Re: Guidance on packet for physicians
Dr. Denkler is a hand surgeon who has done surgery, NA, and Xiaflex. I would recommend that interested doctors call or email Dr. Denkler as he is always willing to share information. He has given several presentations at hand surgeon associations.
He does not go into specifics about RT on his website, but he has a short paragraph that says,
"Radiation Therapy
Radiation therapy is helpful in preventing progression of the disease and may have some use in preventing contractures or keeping fingers straight after treatment[67-69]. Radiotherapy should be done when the fingers are straight and therefore preliminary needle aponeurotomy or enzyme treatments would be necessary to straighten the fingers. Radiotherapy would then be performed to prevent recurrence although 31% of patients with Dupuytren’s continued to progress despite radiation[67]."
Reference # 67 is "67. Betz, N., et al., Radiotherapy in early-stage Dupuytren's contracture. Long-term results after 13 years. Strahlenther Onkol, 2010. 186(2): p. 82-90."
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07/28/2012 12:38
MerryMom
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07/28/2012 12:38
MerryMom
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Re: Guidance on packet for physicians
Thanks Tusk and Flojo. I really would like to put something together with some basic facts about RT that will peak their interest further. I'm thinking a preliminary info package that will get the doctors wanting to go to that next step of wanting to learn more.
There is a radiologist in New York who treats DD, BUT only after surgery/NA. The closest doctor who uses RT as a first step is a long journey away. In my case, the far distance provided quite a challenge. Not only did I have the stress of dealing with my diagnosis and undergoing treatment, I had to find two weeks of child care. So my goal is to get a doctor involved here in the New York area. And, the more physicians who actually perform radiation, the faster it becomes the acceptable first course of treatment here in the US, and will be covered by all insurance companies. Imagine if every DD patient presented such information to every doctor they consulted, or their friends who are doctors. Just seems like it can only help to spread the word to the medical community. My hand surgeon in Connecticut had never even heard of RT for DD.
Anyway, I'd like to do this to help future patients in my area. It would make me so happy to make even a tiny impact on moving this protocol to the forefront. Every time we add one more doctor to our list, we help get more patients access to RT.
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07/28/2012 18:15
Lanod
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07/28/2012 18:15
Lanod
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Re: Guidance on packet for physicians
MerryMum,
Thanks a really good suggestion - that there should be a source of information so the we patients can 'inform' the medics on the advantages of RT for DD.
I have experienced the related problem - i.e. eventually finding a radiotherapy centre that is willing to do the procedure - but which does not have the necessary information or experience to treat DD.
Can I suggest that we use the Wikipedia site on Dupuytrens to be the source of this information. Alcook101 has already put in a great section on Wikipedia on RT and we could add a bit to this (maybe on treatment margins and optimal timings) and add some more links. Another suggestion might be to put up a separate page on RT for DD?
Any comments?
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07/28/2012 21:04
callie
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07/28/2012 21:04
callie
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Re: Guidance on packet for physicians
I don't think the problem for RT in the U.S. is the medical community. I had no problem finding people who would do the procedure. The problem is insurance and the very high cost of RT in the U.S.
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07/29/2012 04:45
flojo
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07/29/2012 04:45
flojo
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Re: Guidance on packet for physicians
MerryMom, It will help our whole Dupuytren's community wherever we are. And it will help build documentation when dealing with insurance companies.
The more we spread knowledge about Dupuytren's and related diseases, the more likely it will become "a standard of treatment" that Medicare and insurance companies want.
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