Yes, Larry, you are absolutely right. I am an experimental bunny and this is not the absolute BEST way to treat my DD. However, as stated, long distance travel is simply not possible for me now & due to rapidity of DD nodule eruptions in my hand, time is of the essence. I am simply taking the best available local action possible. I agree, it would be ideal if all the RT docs who treat DD could get together, even virtually, and share their knowledge & techniques to ensure the best possible outcome for patients. The expert German doc could produce a video conference with all interested docs to demonstrate proper palpation techniques, cord versus node, how to check feet for LD, decision points on if right time to treat with RT, etc. This would be technically simple & extremely effective.

To update on my treatment, finished up with first 5 consecutive days of RT on left hand (this is my only DD-affected extemity to date). No problems with dry skin or any external changes - only some itchiness and very slight burning sensation at site of radiation after days 4 & 5 of treatment. Staff at Univ of CO Radiation Oncology continue to delight & surprise me with their phenomenal patient care. They even gave my 5th grade son a quick behind the scenes "tour" of the facility.

My insurance coverage is Aetna Open Access HMO. They paid for all of initial visit to Dr. Kavanagh, CAT scan, setup & plan for RT plan (total approximately $4600) with exception of 2 $65 copays (I basically had 2 appts with Dr K so 2 copays). The $4600 is the contracted amount for services between University of CO Hospital & Aetna. Actual amount billed by the hospital was actually about 40% more, then reduced to contracted amount by Aetna when claims were paid. The amount of insurance coverage for the first 5 RT treatments still being hashed out between Aetna & the hospital. Will update when more info becomes available. If your insurance coverage is not so extensive and you are able to travel, definitely makes sense to go to Germany.

I specifically asked what dosage of radiation I would be receiving & it is 2 courses of (5 x 3 Gy) = 30 Gy total.

Thats a good idea getting all these doctors together to swap treatment methods,etc. But i can tell you this much i was one of those bunnies you were talking about. And i don't regret going ahead with my treatments. I feel very lucky that i found a doctor that would consider doing this. He is a very smart, caring doctor that knows what he is doing. These doctors take care of cancer patients that are hoping this doctor will save there life. They know how to use the machines. These doctors also know how to feel around for nodules and cords. I agree this is different than having cancer but at least they are giving us a chance that have DD. If there were not people like me that took that chance to help my hands then there would not be any doctors treating it. I don't mind being a bunny as you call it because in the end i am helping this doctor learn about a horrible disease. And know he can help others. I trust my doctor in every way. Also if i had to do treatments again or if i knew someone with this problem i would be running back to this same doctor again and again. He saved my hands and i hope he can save other peoples hands. I'm not sure what profession you have in medical and don't really know what i think about what you just said. But it sounds like you don't want to be a bunny or as i call it a sucker for experimenting. And thats your opinion. I just think everyone should decide on their on. Take care

Hi, I am still figthing with BCBS but have decided to proceed with my RT in Des Moines, IA while I continue the fight. I will give my doctor a downpayment, and if we do not win, I will pay for my therapy out of pocket. They assure me that they will give me the reduced insurance price. My brother-in-law is a lawyer and I plan to go legal on this when and if I have to. Germany is not a good option for me, I own a small business and going abroad twice would be a hardship for my livelyhood. I also like the idea of my doctor being 20 minutes away should there be any complications down the road. I am willing to help train another radiologist in this county, we have to do the groundwork to make RT accessable and the standard protocol for those who need and want the treatment. I hope to have CAT scans next week for both hands and start treatment the following week. I am so excited to get this treated!
LauriW

Larry:

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To Anyone who starts with "unexperienced" radiation therapy doctors

I have learned my lesson well, and being in medicine myself, I can confirm how difficult it is to make the right judgement about "Is this a nodule ?" "Is that a cord ?" "What safety margin should be taken to cover the palpated changes ?"

If the physical examination is WRONG from the beginning, how could the treatment be correct ? I have learned that many doctors - even in GERMANY - don't know to palpate correctly, they forget to palpate the feet as well ! They can't weigh the risk factors and so on ...

I was not willing to be an experimental bunny, as I know that you can treat only ONE TIME and that has to be done properly. I didn't want to get a PATCHWORK treatment ....

In conclusion: I think, doctors who start their experience should have done some practical courses to make them aware of all the variabilities of DD and LD. Why not getting these willing doctors together to let them exchange their skills ??

Larry,

you are exactly right that MD's have abandoned the thorough 'hands on' evaluation. The week before my Orthopedic visit and MRI, I went to a rheumatologist. Ledderhose had never crossed my mind. I suspected arthritis was causing pain in both feet. The rheumatologist just looked and said "I see nothing objective". A week later the MRi shows leddderhose and arthritis with join effusions. I'm sure you can guess which MD won't be treating me for arthritis.
I believe PT's and OT's do more thorough physical evaluations.
So, I see your point about the MD's just starting. However, I may have to trust one of them. Maybe I can teach him a little about palpation.

Beth