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Newly diagnosed
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10/22/2007 17:31
maria 
10/22/2007 17:31
maria 
Newly diagnosed

I was diagnosed yesterday by my GP as having dupuytrens contracture. It is in the early stages, just hard lumps in the palm of my right hand without any contracture of the fingers. He explained what might happen, said it was very common but suggested that I ignore it unless the fingers started to bend in which case I could have an operation. Having found your excellent website and read about radiotherapy being important in the early stages, I am a bit confused. My GP is normally very knowledgeable. If radiotherapy is so important, why is it so little used in the UK? Some advice please before I return to my GP. Thanks

10/22/2007 18:53
JAnnRunner 
10/22/2007 18:53
JAnnRunner 
Re: Newly diagnosed

If no contracture leave well enough alone, surgery for me anyway made it worse not better!! What I have read about radiation theraphy is not much helpful results. Just really look into changing your diet and exercise more. What you eat and drink really does effect the disease.. Raw foods are good and stay away from as much process food as you can.. Stretching you hand and keeping them strong is important

10/22/2007 23:13
newman 
10/22/2007 23:13
newman 

Re: Newly diagnosed

Hi Australia Calling. Radiotherapy is also new here down under . I 've just been to Essen Germany where I had 5X3 sessions under Prof .Seegenschmiedt.Have a look under the Dupuytrens site, go to "News" and read 'Sept.07 'under Personal Experience."Judith in U.K. There are some contacts there . e-mail Judith Proctor .
Professor Seegenschmiedt is a world authority on this matter. Depending on your age ,it appears ,from what you have written now it the time. Hope this gives you a bit more information. Regards.

10/23/2007 14:29
Issleib 
10/23/2007 14:29
Issleib 
Re: Newly diagnosed

It's not widly known. I found out about it using medical search engins at my hospital, I'm a physician. My Internist had never heard of it and wasn't helpful. I e-mailed a friend in radiation oncology and asked if the literature was valid and he said it was perfecyly valid and helped me find treatment near my home. Even with my contacts it took about 6 months to arrange. But I have had amazing results. I had very aggresive disease in both hands and both feet. It'd been over ayear for my hands and about 7 months for my feet. The smaller nodules are gone and the larger ones greatly shrunked and softened. I have nodules on my knee caps and they have continued to keep growing so I'm sure my hands and feet would have progressed without treatment. Take him a copy on Seegenschmidts artical

10/23/2007 23:34
JAnnRunner 
10/23/2007 23:34
JAnnRunner 
Re: Newly diagnosed

Thanks for the helpful info I will look into that. I am currently signned up to take part in a blind study for Auxilium with the drug AA4500. I have my first visit Monday. I am a little nervous on doing this blind study I only have contacture in my pip and no nodules in my palm as of yet. I started showing signs at 25 and I am know in my 30's and have had two failed surgeries on my pip, I tried to get with Dr Eaton with NA and was told by his office he could not help me. My DC in deep in my joints of my fingers spiraling around the cords. I also am starting to show sign of DC in my feet ( big toe) .

10/24/2007 06:50
TrevB 
10/24/2007 06:50
TrevB 

Re: Newly diagnosed

Quote:



I was diagnosed yesterday by my GP as having dupuytrens contracture. It is in the early stages, just hard lumps in the palm of my right hand without any contracture of the fingers. He explained what might happen, said it was very common but suggested that I ignore it unless the fingers started to bend in which case I could have an operation. Having found your excellent website and read about radiotherapy being important in the early stages, I am a bit confused. My GP is normally very knowledgeable. If radiotherapy is so important, why is it so little used in the UK? Some advice please before I return to my GP. Thanks



Hi Maria

I'm in the UK (Cambs) as well and have had exactly the same advice (wait and see) from my GP and a hospital consultant . It is disappointing that GPs don't know all the tricks but they are a jack of all ills after all. What was more disappointing is that a specialist who we do really have to rely on only suggested invasive surgery when I could no longer flatten my hand on the table. He never mentioned the possibilty of NA as an alternative? I had a single nodule at that time which would have been a good candidate for radiotherapy but the only option given was the knife. I'm nervous of radiotherapy but if he'd suggested it then I'd have followed his advice. Hopefully NA will work for me when the time comes (although once again, your GP will not suggest that and you'll have to take details of the NA practitioner that you want to see) but perhaps that could have been avoided by early radiotherapy?

A UK member of this board had radiotherapy at Poole Hospital (see the UK site hear) http://www.dupuytren-online.info/radiotherapy_clinics.html

I've e-mailed Poole Hospital a couple of times but never even had the courtesy of a reply:

Hi
I have Dupuytren's disease (without contracture as yet) in the palm of my right hand, which is the only one I use because I have residual paralysis of my left arm hand due to RTA head injury. I have read on the forum of http://www.dupuytren-online.info/index.html that someone has had radiotherapy at Poole hospital, carried out by Dr Goode. Is this something that you could offer as treatment if I chose to go down that route. I'm finding it very hard to get any advice because Radiotherapy and Needle Aponevrotomy are just not seen as first stage treatments in the UK. Trying to avoid open surgery at a future date is what I'm trying to do.

Hope thay helps?

10/24/2007 19:17
maria 
10/24/2007 19:17
maria 
Re: Newly diagnosed

Hi Trevb

Was interested to hear that you also got the same story as me from GP plus consultant. I am also in Cambs (well, just over the border in Essex but Addenbrookes is my nearest hospital). Please let me know re new developments. It's hard to know what to do next. Maybe if you phone Poole, they'll speak to you directly.

Good luck

Maria

10/25/2007 10:03
TrevB 
10/25/2007 10:03
TrevB 

Re: Newly diagnosed

Quote:



Hi Trevb

Was interested to hear that you also got the same story as me from GP plus consultant. I am also in Cambs (well, just over the border in Essex but Addenbrookes is my nearest hospital). Please let me know re new developments. It's hard to know what to do next. Maybe if you phone Poole, they'll speak to you directly.

Good luck

Maria



Just to add Maria, I also wrote to my GP with this site/forum details about the option of radiotherapy (I thought he'd have more time outside surgery to look at it) but he just suggested that I send the same information to the consultant whose only solution was open surgery anyway. I really hate all things medical and although I try to find the options I just end up with damage limitation when the time comes (I'm 3 years down the line from first nodule). Having lost many of my family to cancer, the risk from radiotherapy worries me although its classed a small. I'd like to see a comparison with say normal x-rays, sunbathing/sunbeds, all over body scans etc before I was happy. Numeric data rarely works for me.

I've been to Addenbrookes many times (in fact they helped save my life as a teenager) and as most of the people in our region get sent there for radiotherapy, you would have thought that treatment for other conditions would be a function they'd offer similar to what goes on in Poole ? http://www.poole.nhs.uk/our_services/nuc...icine/index.asp Perhaps they already do?

Edited at 25.10.07 13:06

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