Gweneth,

Thank you for the heads up. I will find out the same thing on June 11th, I'm sure.

I felt very confident with Dr. T, but keep hearing things to consider and ask. You validate my impression of Dr. T.

I want to stop the progression and RT is it. I want to avoid even having NA again, but definitely will be doing anything I can but the surgery.

Please update on how your RT is going, if you have any dryness or other side-effects, how much dosage and anything else.

Thanks so much,

Flora

Hi, Diana,

I have an appointment on 5/15 wtih with an oncologist. After calling every oncologist in Charlotte, NC I found one who not only knows what DC is, but treats it. . He said he follows the German format for RT. (He brought that up, I did not even have to ask) I explained to him that I need someone to help me manage this disease over a long period of time. As I stated earlier I had a Kenalog shot and that still seems to be working, but who knows for how long. I want his advice as to more Kenalog shots or RT, etc..

I do not know where you are located and if you are close to NC or if this will fulfill my questions. But I will keep you posted as to his expertise if you would like.

Regards,

Lori

Edited 05/07/09 17:25

Hi Lori. Good for you finding a doctor. I was just denied by my HMO today to even have a consult with a radiation oncologist. I am still going to pursue many options but one question - did your new doctor quote you a fee?

Thanks, Diana

Hi, Wolfgang, Flora and Diana:

I have not asked the price, yet..I have a call into the billing area. Will let you know asap. I am awaiting them to email me some infomation and forms so hopefully should have that soon...

He will be contacting the DS to list his practice and physician's contact information. He was stunned that we were looking to go to Germany since no one was local to see. He pulled up the web site while we were on the phone, so I believe he will pursue contacting you Wolfgang.

Lori

Hi Lori. My medical group actually denied my seeing a radiation oncologist - their reason - the person is not in the network. I just love our American health insurance rules.

Anyway, their letter said that the "request may be reconsidered after evaluation by a hand specialist" - who is the surgeon by the way. She is booked up till the end of June - aaargh.

I actually called the out of network radiation/oncologist office where the receptionist asked the doctor about radiation for Dupuytren's and the answer was "no - they don't do it". So like you, I may need to call around. But since it was so expensive to have it done in VA, I'm guessing that it probably will still be less expensive to travel to Germany - assuming I ever get through to them!

So my next steps are:
1) appeal my medical group decision
2) try to contact Erlangen since Essen is not responding
3) Per your suggestion, contact the HR dept and see if they can help

I really appreciate communicating with you - thank you.

Diana