| New diagnosis - not sure how to proceed |
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09/04/2013 14:06
JeffM 
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09/04/2013 14:06
JeffM
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New diagnosis - not sure how to proceed
I was diagnosed with DD a few weeks ago by my family doctor after complaining of some lumps in the palms of my hand near the base of my ring fingers. Since then, I have found out that my Grandfather also had it and had undergone surgery to correct it. I play the guitar - not professionally, but for my own enjoyment. It is like a therapy for me and I can't imagine what it would be like to not be able to play. My doctor told me that there is nothing to be done until there begins to be curling of the fingers and then there are injections or surgery options. I'm not sure I want to wait that long and I'm not sure I like either of those options. I have read about radiation therapy on this website and see that it might have some hope of slowing it down. I have noticed progression over the past weeks, with changes in skin dimpling and a cord beginning to form on my right hand. The lumps hurt at times, but more often I feel a tingling sensation that constantly reminds me it is there. For those of you who have been through this, what should my next step be? Should I get a referral to a hand clinic or try to get a referral for radiation treatment? Are there other options that I am missing? I am located in Calgary, Canada, so I see there is a clinic here that does the radiation treatment, but have the means to travel to another country for treatments if it would be beneficial. Any advice would be greatly appreciated.
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09/05/2013 02:21
stephenp 
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09/05/2013 02:21
stephenp
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Re: New diagnosis - not sure how to proceed
As it sounds as though the disease is quite active RT is the only treatment option at this stage. As you have no contraction, there is a good chance of success (~95%).
It might be useful to get a second opinion but it sounds like DD, especially as there is a family history.
Where to get RT?
There is no doubt that Prof Seegenschmeidt in Germany has the most DD RT experience in the world. If you an afford a 12 week holiday in Germany while being treated, you can be assured of the best. While there are different views on this, I believe that this is not a complex treatment, it is well described, and can be delivered by any competent radiologist who understands the disease. A search of this forum may uncover a radiologist based in Canada who has used RT.
Do not be put off by medical practitioners who say RT does not work. There is good data that you can provide to them.
Check out a few of the current RT threads on this forum to get some perspectives.
Good Luck
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09/05/2013 16:23
JeffM
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09/05/2013 16:23
JeffM
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Re: New diagnosis - not sure how to proceed
Thanks for the response. I will definitely be exploring the RT option and will try to post my experiences.
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09/05/2013 21:52
JohnG
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09/05/2013 21:52
JohnG
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Re: New diagnosis - not sure how to proceed
Jeff, I agree that you sound like a candidate for RT, assuming the DD diagnosis by your family doctor is correct.
To start, unless your radiation doctor has lots of experience with DD, I would see a hand surgeon first for a consultation to confirm the diagnosis. The surgeon will palpate your hand to identify the nodes and cords, which is something that a radiation oncologist typically doesn't know how to do.
While you're there at the surgeon's office, you could discuss the radiation therapy with the goal of getting the surgeon to use an ink pen to mark the nodes and cords, just like they do in the German clinics. Take a printed copy of one of the German examples with you to show the surgeon what you have in mind, and hand him a ball-point pen or a sharpy marker. Then take a photo of your hand right away, before you wash it.
Don't be surprised if the surgeon is surprised at this request, by the way. Also, you may have to ignore certain things the hand surgeon will recommend, for example to do nothing then come back when the hand is contracted by 45 degrees.
After you've seen the hand surgeon to confirm the diagnosis, then see the radiation oncologist.
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09/05/2013 23:31
moondanc 
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09/05/2013 23:31
moondanc
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Re: New diagnosis - not sure how to proceed
JohnG:
. Take a printed copy of one of the German examples with you to show the surgeon what you have in mind, and hand him a ball-point pen or a sharpy marker. Then take a photo of your hand right away, before you wash it.
Although I've had DD for many years, I just became aware of this "tracking" technique a few months ago when another patient told me. He suggested marking and then xeroxing the hand to make it easier to compare.
Agove you say, "take a printed copy ....German examples"-- where can I find this?
Diane
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09/06/2013 03:44
stephenp
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09/06/2013 03:44
stephenp
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Re: New diagnosis - not sure how to proceed
You can see some examples of the mapping of nodules etc in the papers from Prof Seegenschmeidt.
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09/06/2013 18:42
moondanc
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09/06/2013 18:42
moondanc
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Re: New diagnosis - not sure how to proceed
stephenp:
You can see some examples of the mapping of nodules etc in the papers from Prof Seegenschmeidt.
I'm in a hurry packing a getting ready for my trip across the country to see Dr. Pess. Can someone please post a link for me? I'd be very grateful. Thank you.
Diane
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