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Dupuytren's Update
Went to the doctor to discuss scan results. I want radiation therapy - the Dupuytren's web site makes it clear that this is the best option for the early stages of the disease (not 100% successful, but it can often stop the disease in its tracks thus avoiding the need for later surgery).
THe Doctor wasn't too sure if this was a good idea (but I've probably read more about it than he has and the side effects seem limited to long-term dry skin in the irradiated area and there have been no reported cancers so far), but he's referring me to the next guy in the chain.
He's also uncertain as to whether radiation therapy for Dupuytren's is available in this country - which does match in with information on the web site. However![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
kalypso_v mentioned someone who'd had radiation therapy (though it didn't help in his case) but I don't know if he was British or not - I'm not well up on cricketers...
Does anyone know if it's available in England?
One thing is clear, the success rate for radiation treatment is best when it is done EARLY.
For new readers of this journal, Dupuytren's is a genetic disease that contracts the tendons in the hand, until you end up with a claw. It's slow, but pretty inevitable. See http://www.dupuytren-online.info/morbus_dupuytren.html for more info about both the disease and the benefits of radiation therapy.
I also have to decide what I'll do if it turns out that I can't get radiation treatment in England. Do I accept the inevitable and wait until I have no option but to get Needle aponeurotomy, which is usually effective, but does not prevent recurrance (it essentially slices through the contracted tissue), or eventual surgery (which tries to remove all the affected tissue, but isn't generally done until an even later stage).
Or, do I consider travelling to Germany? (there's nearly 2 million people with Dupuytrans in Germany, probably why they have more expertise in treating it)
It's worth noting that Dupuytren's is fairly common among certain ethnic groups. For instance 40% of Scottish men will develop it at some time in their life, as with around 20% of Japanese men (thus disproving the myth of it being solely a Viking gene). It is twice as common among men as among women and generally only affects older people.
THe Doctor wasn't too sure if this was a good idea (but I've probably read more about it than he has and the side effects seem limited to long-term dry skin in the irradiated area and there have been no reported cancers so far), but he's referring me to the next guy in the chain.
He's also uncertain as to whether radiation therapy for Dupuytren's is available in this country - which does match in with information on the web site. However
kalypso_v mentioned someone who'd had radiation therapy (though it didn't help in his case) but I don't know if he was British or not - I'm not well up on cricketers...Does anyone know if it's available in England?
One thing is clear, the success rate for radiation treatment is best when it is done EARLY.
For new readers of this journal, Dupuytren's is a genetic disease that contracts the tendons in the hand, until you end up with a claw. It's slow, but pretty inevitable. See http://www.dupuytren-online.info/morbus_dupuytren.html for more info about both the disease and the benefits of radiation therapy.
I also have to decide what I'll do if it turns out that I can't get radiation treatment in England. Do I accept the inevitable and wait until I have no option but to get Needle aponeurotomy, which is usually effective, but does not prevent recurrance (it essentially slices through the contracted tissue), or eventual surgery (which tries to remove all the affected tissue, but isn't generally done until an even later stage).
Or, do I consider travelling to Germany? (there's nearly 2 million people with Dupuytrans in Germany, probably why they have more expertise in treating it)
It's worth noting that Dupuytren's is fairly common among certain ethnic groups. For instance 40% of Scottish men will develop it at some time in their life, as with around 20% of Japanese men (thus disproving the myth of it being solely a Viking gene). It is twice as common among men as among women and generally only affects older people.
Re: Dr Glees for RT treatment of Dupuytren's Contracture
I think my biggest question mark is whether I need it at all. I don't know whether my lump will develop into full blown Dupuytren's Contracture with the fingers bent over double or just stay the way it is forever.
Probably one of those impossible to answer questions.
My brother was only ever offered surgery, nothing else.
I don't know what my chances are of getting the RT treatment on the NHS. I have booked my first appointment with Dr Glees without bothering to see the GP because I can guess that all I'd get from them would be wait until it gets really bad then have surgery.
Maybe, after seeing Dr Glees I can attempt to create a case for my GP to get it on the NHS. Would save me a small fortune... and potentially save the NHS having to pay for more expensive surgery instead (if they agreed to view it that way).
In this day and age I don't fancy my chances...
Re: Dr Glees for RT treatment of Dupuytren's Contracture
that's what the NHS told me too. Wait until it's bad and then get surgery.
I'm a musician. It's important to me to be able to play my concertina. I can't do that with bent fingers.
I just kept saying to every doctor I met, this is the data, I want RT. I kept getting referred to various people, but I kept on showing them the data and asking firmly for what I wanted.
However, the man who treated me has retired. I'm not currently aware of anyone else within the NHS who is treating people. Yet, as you say, it is cost-effective for them to treat you.
I see Dr Glees and one other in London - http://www.dupuytren-online.info/radiotherapy_clinics.html - but I don't know if he's private or NHS. You could ask about Dr Shaeffer.
Re: Dr Glees for RT treatment of Dupuytren's Contracture
I research the web these days for proof of the radiotherapy of DC.I got the diagnose this year and am a bit curious that so little positive feedback has entered the Norwegian/scandinavian healthsystem about this cure. I asked a couple of well-informed handspecialists but they had only heard about the Xiaflex-injections.They were very sceptical regarding the lack of referred evidence and also worried about the cancer-risks.Also as I look on postings on the web it is hard to find a person to ask that is not working for the facilities that preform the radiotherapy. A lot of the posters are "anonymous". Have you any personal firsthand knowledge about the posive/negative results from this therapy?
Thanks- Erik
RT treatment of Dupuytren's Contracture
see http://www.dupuytrens-society.org.uk/Radiotherapy.html for an overview
Radiotherapy has been approved in the UK by the government body NICE.
The recent research now includes long-term follow ups and the results are good - http://www.ncbi.nlm.nih.gov/pubmed/8960518
The cancer risks are extremely low - see http://www.dupuytren-online.de/downloads/Risk%20of%20cancer%20with%20radiation%20therapy%20of%20Morbus%20Dupuytren.htm
The increase in risk is lower than the margin of error used to calculate the risk.
I had radiotherapy about six years ago. My fingers are still straight. When my hand was last examined, the doctor said the cord was soft rather than hard - that was due to the radiotherapy. I have no new cords since the treatment. I don't know if the effect will last forever, but I'm happy so far.
Xiaflex has had a lot of publicity (Pfizer have spent a lot of money promoting it). It's a suitable treatment once the fingers are bent, as is NA. Radiotherapy is most effective before the fingers are bent much.
I ended up being one of the trustees for the charity 'British Dupuytren's Society' - http://www.dupuytrens-society.org.uk , partly so that other people would have the chance to learn about radiotherapy. No one in the UK had heard of it when I first asked for treatment. Now there are several people offering it.
(BTW - we are a very small charity with almost no money. Donations gratefully accepted!)