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An Australian. Dupuytren's begins.
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08/11/2014 08:32
kate 
08/11/2014 08:32
kate 
Re: An Australian. Dupuytren's begins.

Thanks, spanishbuddha. So in your opinion it is better to rely on the opinion of a doctor if he is experienced in RT. But at the same time I have read somewhere that your colleague Wolfgang Wash said: If DD is treated within first 12 months, the probability of progression is 2%, if treated after 4 years- probability of progression is 55%.
Confused again.

08/11/2014 09:09
newman 
08/11/2014 09:09
newman 

Re: An Australian. Dupuytren's begins.

Hi the problem lies in the medical training system all over the world .The hand surgeon knows his art and the oncologist knows his and rarely do the two meet unless an oncologist has in interest in the treatment on non malignant disorders.(In my experience and I've had 15 hand surgeries. I had to educate the surgeon even to the fact of PNF ) It is only through forums such as this that patients bring their knowledge to the table and the medico's them inform themselves. Age is a factor to be considered. Remember that the disease may never develop further . Unfortunately for some such as myself I have an aggressive form.

Edited 08/11/14 12:13

08/11/2014 10:00
EasyRhino 
08/11/2014 10:00
EasyRhino 
Re: An Australian. Dupuytren's begins.

kate:
Thanks, spanishbuddha. So in your opinion it is better to rely on the opinion of a doctor if he is experienced in RT. But at the same time I have read somewhere that your colleague Wolfgang Wash said: If DD is treated within first 12 months, the probability of progression is 2%, if treated after 4 years- probability of progression is 55%.
Confused again.

Spanish buddha makes some good points.

I think that the confusion you have may be the understanding of the definition of early in regards to DC nodule formation perhaps. In this case, early would be specific to the developmental stage of any nodules themselves, not the age of the patient, or the date of onset of the first indications of DC. It is not uncommon to have a first onset of DC, followed by "new" nodules later. With RT, early means that the success rate of RT is largely influenced by the point in nodule development that one gets the RT treatment to them. RT is not preventative to the formation of later nodules, and indeed the morphology (or is it etiology) of the initial formation of DC nodules is poorly understood.

It is quite possible that one might have several "onsets" of DC nodule formation requiring treatments; however, I'm not certain that it is the most common manifestation of DC, but it clearly happens.

So if DC is initially treated within the first 12 months of diagnosis (assuming a non-dealyed adequately early diagnosis), there is a 98% chance of arresting further development of the treated nodules (there may be others later). But, if you wait for 4 years, there is only a 45% chance that the nodule growth is arrested for the nodules treated. I hope that this helps. The longer one waits until RT treatment, the less the chance of success in RT arresting the nodule growth.

08/11/2014 10:12
kate 
08/11/2014 10:12
kate 
Re: An Australian. Dupuytren's begins.

EasyRhino, what are you suggesting? Should I wait for some time , watch nodules and then decide if I am a suitable candidate for RT or not ?

08/11/2014 11:08
EasyRhino 
08/11/2014 11:08
EasyRhino 
Re: An Australian. Dupuytren's begins.

kate:
EasyRhino, what are you suggesting? Should I wait for some time , watch nodules and then decide if I am a suitable candidate for RT or not ?

Kate;

Actually, nothing of the kind. First, have you had a positive diagnosis for DC? Next, have you confirmed that you are a candidate for RT - there are several factors involved in this, including your comfort with RT, an available RT treatment center, and a doctor that agrees to take your case. Additionally, in order to be more successful, you want to have it early enough to have the best chance of success. These are not sequential steps in my mind, but parallel steps.

I would strongly let a doctor familiar with RT watch your nodules, even if you are thoroughly familiar with them. I was very familiar with them and Dr. Weiss from VCU found more of them than I was aware of. If you wait until the nodules get into the chord stages, you risk losing effectiveness of the treatment.

Kevin

08/11/2014 11:44
kate 
08/11/2014 11:44
kate 
Re: An Australian. Dupuytren's begins.

EasyRhino, I agree with you! I have seen only GP who sent me for an US, that confirmed I have got DD. I am going to see a Radiologist who treats DC. Of course I am very fearful about possible side effect of RT. I had exactly the same opinion as you that if I have got RT early or as soon as possible it will be the most effective until spanishbuddha who is an administrator here wrote to me: "But in many, the majority perhaps of cases, the early stage or beginning settles down, does not lead on to building many nodules or cords, or develops slowly over years. Those cases are probably unsuitable, don't need, RT. That's why a more holistic view or diagnosis is needed, not just examining nodules. I don't myself believe there is a contradiction." And "So to answer your question, RT can be performed and be effective if done several years after first diagnosis if the condition is (early) in an active cycle."
Have you already had RT?

08/11/2014 13:09
EasyRhino 
08/11/2014 13:09
EasyRhino 
Re: An Australian. Dupuytren's begins.

kate:
EasyRhino, I agree with you! I have seen only GP who sent me for an US, that confirmed I have got DD. I am going to see a Radiologist who treats DC. Of course I am very fearful about possible side effect of RT. I had exactly the same opinion as you that if I have got RT early or as soon as possible it will be the most effective until spanishbuddha who is an administrator here wrote to me: "But in many, the majority perhaps of cases, the early stage or beginning settles down, does not lead on to building many nodules or cords, or develops slowly over years. Those cases are probably unsuitable, don't need, RT. That's why a more holistic view or diagnosis is needed, not just examining nodules. I don't myself believe there is a contradiction." And "So to answer your question, RT can be performed and be effective if done several years after first diagnosis if the condition is (early) in an active cycle."
Have you already had RT?

Yes, I have. My father's progressed rapidly, and mine was initially discovered last fall (by me), and was growing noticeably. Therefore, I chose not to delay. I am running the long thread on "starting RT Monday" and have had the first week of treatments.

I would advise to separate the fear of RT from the medically-most viable course of treatments for your case. Be informed of RT disks, not fearful, as fear has nothing to do with the outcome but may skew one's decision making process unnecessarily.

Best wishes.

Kevin

Edited 08/11/14 16:10

08/11/2014 15:01
spanishbuddha 

Administrator

08/11/2014 15:01
spanishbuddha 

Administrator

Re: An Australian. Dupuytren's begins.

EasyRhino makes a good point, RT is not a prophylactic or preventative treatment. It works on what's there and happening at that time. Also since for most, it can only be performed once (maybe another half round in exceptional circumstances), that is why it is important to do it at the right time, and not when it's not really necessary. You have one shot, make it count, at the right time. I still have not answered Kate's request for advice, but I cannot, only the treating and hopefully experienced physician can. I did tell you about my own case as an example.

08/12/2014 06:56
kate 
08/12/2014 06:56
kate 
Re: An Australian. Dupuytren's begins.

Thank you, EasyRhino and spanishbuddha.

08/12/2014 07:53
Coogeematt 
08/12/2014 07:53
Coogeematt 
Re: An Australian. Dupuytren's begins.

Oh yes. Thank you all and you kate for keeping this conversation going. I have learnt so much. In particular in the way I consider and think about things from comments on this thread.
And the point that RT is not a preventive action but a treatment of an active disease.
Just hoping my treating radiologist and hand therapist are as knowledge as this open and questioning community.

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