Last winter I underwent radiation treatment on 5 nodules in left hand. Now I have a new nodule in an area outside of the treated zone and one of the treated nodules has grown and is now I think a cord. I contacted Dr. Weiss who did the radiation and she said I can have another round and she would want to do it in 7 days rather than the 5 and 5 like before.

Has anybody had success in a similar situation?

I'm wondering a couple of things - it will cost me a couple thousand dollars out of pocket to go through rt again. If it didn't work before, why would it work now.

I'm wondering if the new nodule was actually there before, but smaller - and when I read about the German doctor who is so good at finding nodules - is there not any kind of imaging that can "spot" the nodules - so the treatment area is more precise? Why don't they just radiate the whole hand?

I'm discouraged, and I don't like the thought of sinking more money into a losing battle. But I really don't like the alternatives either.

It has been 15 months since i had radiation on both of my hands. And i wanted to let you know that the doctor that treated me did the whole hand and up the fingers to middle knuckle. Thumbs to middle knuckle and i have not had any new nodules or reactivation. I don't think a person has to go to Germany to find a good doctor that will do the whole hand. My doctor is in Liberty Missouri and i was his first patient for DD. I will never go to anyone else. I'm so sorry that you are having bad luck with this disease. But it sounds like most of it is the doctors fault because he didn't do it the right way the first time. Shop around before you go to Germany or come to Missouri. Take care

I'm sorry but i disagree. I feel like it doesn't matter if they are a first timer. Everyone needs to remember what type of doctors they are. These doctors take care of only cancer patients. Patients that are fighting for their life for most of them. If you can't trust a doctor that is helping cancer patients and went to school only to do radiation then everyone needs to rethink this. They are one of the few doctors that have a brain. And as for them knowing about DD - well i feel like if i hadn't trusted him enough to take on my problem i would still be stuck with active DD. It takes people like me to help these doctors learn about this disease and in return he helped me. It seems like what i have read on here more and more people are having reactivation outside of radiated area. So i go to a doctor that is treating someone for the first time and if you think he is not qualified to treat this - then why was he so smart to know he was going to treat my whole hand. Some of these doctors see it as you will return and they will make more money. I feel like if they did it right the first time you wouldn't have to go back. I go for my 6 month check up with him this week. I will make sure that he knows there are people out there that think first time doctors that treat this are STUPID AND DO NOT KNOW ANYTHING ABOUT ANYTHING. Maybe we should let patients know this that have cancer. And i ask you if you had cancer and needed radiation but the doctor had never treated before would you not go or take the chance in dying because there wasn't anymore doctors available. This is just crazy! Its been 15 months for me since treatment and i am so glad i took that chance.

My experience with RT was successful in my opinion. Dr. T at Scripps San Diego/La Jolla did it. He was not new at treating DD. He did treat my whole palm including all metacarpal joints and the thumb up to the top joint. He used the 5 + 5 protocol, 2gy each treatment.

Now I am looking at DD starting in my left hand. I recently consulted with Dr. Ari Katerelos, a radiologist/oncologist at Loma Linda University Medical Center, a teaching hospital. He has treated keloids with RT but not DD or LD. He insisted on getting information about prior treatment and present area of concern before the consultation. When I got there, he was prepared with research from Dr. S in Germany and elsewhere. He palpated my hand thoroughly and both feet to look for nodules/signs of DD and Ledderhose. He asked questions, listened to my comments about my knowledge about DD based on information from this website and this Forum. He showed interest and respect for my knowledge and research with no sign of arrogance. (Actually, with all the knowledge and understanding about DD form this website and Forum, I may be inclined to be a little arrogant about my knowledge I do stay open minded because there is still so much to learn about this disease.) He provided me with information about the research studies he used, which protocol he would use (7 days within a 2 week period with 3 gy per treatment), and why he found that protocol to be preferable.

It's looking like there will be a next time for RT for me on my left hand. I plan to go to the newbie, Dr. Katerelos. I also feel that if he can treat specific cancers, which are every one different from the other, he can treat my DD. Maybe the key is the confidence I have in him. He clearly demonstrated knowledge about DD, RT, had learned form various research studies, and I have no hesitation about going with him even if I am his first patient.

Another significant benefit is the thorough letter that Dr. Katerelos wrote for me to submit to Medicare in my appeal regarding the denied claim regarding my last RT at Scripps.

Oh I hope I haven't given the wrong impression. Dr. Weiss is very knowledgeable and experienced with DD patients. I have every faith in her ability. I was just wondering if because I have growth of a nodule that's been treated - am I to assume that I'm in the 15% for whom rt is not effective. And I was wondering if anyone else had a similar experience after rt - then got retreated. And if so, what has been the outcome.

Also, another question. Because it's a progressive condition, is contraction inevitable? or do some people only have nodules and/or cords that never progress beyond that.