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Decision making - need input
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05/16/11 23:49
Laurie 
05/16/11 23:49
Laurie 
Decision making - need input

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.

05/17/11 00:14
spanishbuddha 

Administrator

05/17/11 00:14
spanishbuddha 

Administrator

Re: Decision making - need input

Professor S in Germany uses a lead mask that allows radiation of all the fingers below the top joints to all the palm. The mask excludes the thumb, unless he detects nodules in that area. So although not all the hand it's most of it. It seemed to me he does have several different size masks, but more to cater for different size hands. His philosophy, I believe, is to cover a wide margin, since disease may be present outside of where nodules can be detected.

05/17/11 04:47
cindy850 
05/17/11 04:47
cindy850 
Re: Decision making - need input

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

05/17/11 10:30
Larry 
05/17/11 10:30
Larry 
Re: Decision making - need input

cindy850:
... Shop around before you go to Germany or come to Missouri. Take care


Being in a situation like Laurie is a real difficult situation - RELAPSE is a BAD THING for ALL TREATMENTS ... and it happens ! I think, this situation is not ready for a FIRST TIME TO DO DOCTOR ... you may be an exception, cindy850

It is important to know, WHERE have the nodules been located before ? HOW wide was the margins of the RADIATION AREA which was treated, HOW FAR is the new nodule away from the OLD AREA ??

I would NOT GO To a "FIRST TIMER ... "

---> Dr. Weiss seems to be knowlegable, however their initial concept was NOT SUCCESSFUL

---> You may not look for a GERMAN DOCTOR, but WHICH U.S. DOCTOR is experienced enough ?
or has already experience with RELAPSE after radiotherapy ...?

---> Probably very few are really experienced ad may give an appropriate advice ... I know WHOM I WOULD consult!

Best regards and hopefully the right decisions and good succes with your way of dealing with this situation!

Larry

05/17/11 16:47
cindy850 
05/17/11 16:47
cindy850 
Re: Decision making - need input

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.

05/17/11 21:20
newman 
05/17/11 21:20
newman 

Re: Decision making - need input

Australia Calling.Hi Cindy. I have not seen any suggestion that medical specialist that you visited is stupid and it would not be correct to convey that impression from the forum. Larry has made his point that he would not visit a first time medico and that is fine and it is respected. In my case I visited a large teaching hospital in Australia and spoke to the Oncologist and they were convinced they could do the treatment,however I suppose I did not wish to be the bunny and it was my decision to go to Germany where I gained as much information about the rt treatment, even purchasing a book published by Prof. Seegenschmiedt at a cost of 200 euros. When I returned to OZ I spread the word and made the book availiable to the Oncologist. Now the treatment is availiable with more clarity. Literature is available showing that radiotherapy has been used in the US to treat Dupuytrens for more than 50 years. The dose rates were up to 65Gy. That is more the double and 3 times higher than the German protocol.
Until Prof. Seegenschmiedt started documenting case studies there was no long term evidence available for the medical persons with certainty. We all know there are risks of Cancer and some medical persons will not act unless they are 100% certain there is no risk . This is the dilema. Prof. Seegenschmiedt has been collecting evidence to show that maybe the same result can be obtained at a lower risk.
It is the risk benifit factor which is very important especially in young adults as the use of radiotherapy is only of benefit in the early stages. I have met a senior oncologist and hand surgeon who both thought I was crazy to have undertaken the treatment.
The great thing is we all have freedom of choice. I am really happy to hear that you are happy with the outcome and have shared your experience on the forum. Regards.

Edited 05/17/11 21:25

05/17/11 23:09
flojo 
05/17/11 23:09
flojo 
Re: Decision making - need input

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.

05/17/11 23:36
spanishbuddha 

Administrator

05/17/11 23:36
spanishbuddha 

Administrator

Re: Decision making - need input

Hi flojo.

Just want to clarify, as it's not completely clear to me, did you have RT for DD with Dr. Ari Katerelos at Loma Linda University Medical Center? If so it might be useful to get him and the hospital added to the list of clinics providing treatment?

05/18/11 02:51
Laurie 
05/18/11 02:51
Laurie 
Re: Decision making - need input

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.

05/18/11 06:58
callie 
05/18/11 06:58
callie 
Re: Decision making - need input

Laurie,

You asked, "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?.

Contraction is not inevitable. Many people have Dupuytren's that never advances to contraction. My father has had Dupuytren's for 40 years and didn't know that the nodules were Dupuytren's. The nodules never bothered him and he just thought they were part of getting old. I wasn't so lucky. I have eight pretty good friends who have Dupuytren's and none have had treatment. One friend has Dupuytren's very badly and has had NA and surgery.

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