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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

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.

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Googling Swedish medical websites, I can't even find radiation as a suggested therapy. They unanimosuly state that operating in a late stage is the only really efficient treatment.

So coming here for treatment doesn't seem to be an option.

Sounds like they haven't even caught up with Needle Aponeurotomy - which is a popular alternative to surgery in the USA - radiation seems to be used in certain parts of Europe and Canada.

I've had a google myself and come up with nothing that says radiation is available for Dupuytren's but West Hertfordshire Hospitals are shown to have carried out some research on the treatment so it is know here. Perhaps they could give your doctor further information even if they might not speak to you.

Bill's English. He said "They tried radiotherapy on mine, on one occasion immediately after therapy" which I took to mean it was done here. But as I said it didn't work on him, and he had to have it operated on.

The phrase 'after therapy' suggests that he'd tried other things first, which means he may have already been in the later stages of the disease where radiotherapy is less effective.

Could you ask him where the radiotherapy was done? I can't find any references to places in the UK that do it.

This thread from an Oxford based musician says it isn't/wasn't available in the UK (read down to 11/5/2006 (US format dates))
http://www.biospecifics.com/forum/readThread.asp?forumID=1&threadID=5246

This site seems to have more info on German and other places that do radiation
http://www.dupuytren-online.info/radiation_therapy.html

The first site mentioned has a UK musician saying the surgery is not suitable for musicians :-(

It looks like Essen is one possible place to go. I also notice that the price cited there is not totally out of my reach... Though I'd have to add travel and accomodation which would push it up a lot.

I don't want to lose my ability to play music. I want to be able to continue to type with all my fingers. I also want to be able to push myself out of a chair without pain. I want to be able to grip the bannister on the stairs without flinching.

30 degree loss of movement would wreck my ability to play an instrument.

I'd imagine that surgery leaves scar tissue and that's the problem for musicians.

The acupuncture/needle therapy sounds like an interesting halfway house that might also be worth keeping in mind for the future.

Travel to Essen can be quite inexpensive (though you'd want to avoid the flying due to climate change, personally I'd weigh up the costs, and then see what I could do with the money saved on the flight to fund political action or similar, but that's me).

I've a fair few friends in Germany (due to filk) so if it was accommodation that was the limiting factor, we could see what we could find ...

I don't think acupuncture is much use overall. There's no mention of it as an evaluated treatment on the main site and I suspect it mainly acts to control the pain.

NA (needle thingy) is a viable treatment, but only when the disease is more advanced. It does not prevent recurrance at all, as it only cuts through the tissue rather then removing it. However, it's a lot less invasive than surgery.

If it was me, I'd go for surgery. I've seen it, I've seen the results, I've seen people happy with the results. Having said that, it's not my decision to make. If I run into one of the hand surgeons tomorrow, I'll ask them about radiation and let you know, though.

Please ask the hand guys about radiation - I'd love to know what they say.

The thing with surgery is that it's not generally done until you reach a contraction of around 30 degrees - that's a lot of movement to be without for several years. (imagine playing an instrument with that degree of contraction - you'd be unable to lift the finger to clear the note). And surgery is not always a permanent cure - it will often need repeating years later when the contraction develops again.

I doubt that I'd be considered for surgery for years yet - my condition is in the very early stages. It still causes pain though. (and early surgery would probably not be a good idea in any case.)

I spoke to the hand fellow today and he hasn't heard of radiation being used to treat Dupytren's - in fact, as radiotherapy is well known for causing contractures elsewhere in the body, he couldn't work out exactly how it would work. Sorry; I know this is probably not what you want to hear. It's definitely worth pursuing a referral though, and pointing out to the hand clinic just how important it is for you to be able to fully extend your fingers - if they know you're motivated and informed they're often in a better position to discuss alternatives/risks and benefits of early surgery.

If he's interested, ask him to look at http://www.dupuytren-online.info/radiation_therapy.html

The therapy has been around long enough to have 10 year follow-ups done on it and appears to be widely used in Germany and Austria (and possibly the Czech Republic) but not much in the English-speaking world. The language barrier seems to have prevented it spreading.

It appears to use low repeated doses and they don't penetrate very deeply, but I don't know why it works. It seems to soften the nodes and prevent further growth.

There are links from that page to studies done at Harvard and elsewhere.

The most interesting article is the translated section at the bottom of this page http://www.springerlink.com/content/0nck81kvnt6dx5qy/

I'm sorry, I don't have any knowledge or advice. But I'm glad that you're pursuing the research so thoroughly yourself, and I'm also glad that the doctor is taking the idea seriously enough to refer you. I hope that the next one will listen and take it seriously, too.

Also, it was lovely to meet you properly at the con, and thank you for adding me back.

I don't have any knowledge or advice, but I wish you well with whatever you choose. I'm so sorry you're going through this.
{{{Hugs}}}

It was lovely to meet you at Redemption.

I tried to get some more info for you - there is a specialised centre in the Czech Republic, try http://ort-art.cz/
Or visit a vast forum on Dupuytren´s on
http://www.biospecifics.com/forum/listthreads.asp?forumID=1

Mind you, Czech medicine is very well known!
And my mum has got it too, had two successful operations but now, in her 84, she doesn´t want to do anything any more...

THe Czech site is in a language I can't read, so I've no real idea what it's about. Does that mention radiation as an option?

The problem with surgery, is that, as in your mother's case, it is not always a permanent cure.

I've taken a look at the biospecifics forum and left a question there. Thanks for mentioning that one - though it is a bit rambling.

Well, actually Czech medical centre does surgery... but they have got an English version, there is an icon at the top of the page. My mum sends you lots of greetings, we discussed this disease just on Friday afternoon. She confirmed it was hereditary...so I can expect is as well.By the way, my mum used to be a very good pianist, we used to play in four hands together, even after both operations.
Anyway, I just couldn´t be silent if you are in distress ...

I hope you can get something sorted. I'm learning how irritating progressive conditions can be (to say the least).

Can I jump on the bandwagon? I've been diagnosed with DD at the age of 46. I have been given the usual, 'wait until it gets worse' message from the GP and hand specialist with the addition of being told that I have knuckle pads which could indicate I will get an 'aggressive form of the disease'. I have been looking on the forum you mention today and agree it seems radiation works for this early stage. One hospital in Poole, Dorset is cited and I am going to call them on Monday to see what the score is. It sounds as though it's worth a try because there is not much chance the thing will go away and quite a big chance it will affect my day to day life. Radiation is pretty scary though!

Please could you copy your post to the livejournal Dupuytrens_UK - I'm trying to collect Dupuytren's stuff there. I'll copy my reply if you do.

Dr Goode at Poole hospital is on indefinite medial leave. You'll need to work on another UK radiotherapist, or else travel to Germany.

I had not problems at all with hte radiotherapy. No side effects and several years later, no progression of my Dupuytren's.

I strongly recommend that you do what I did - keep asking the NHS to refer you to a radiotherapist. when you finally get to a radiotherapist, say that the German's have been using radiotherapy as a treatment for Dupuytren's for nearly thirty years and their results have been very good. Then hand over a printout of all the relevant stuff from the Dupuytren Society's website - that's what convinced Dr Goode.

Do NOT get referred to a hand specialist - get referred to a radiotherapist.

Above message from Anonymous is me. I would really appreciate hearing if anyone has got radiation treatment in England and how they achieved that. I can't see my doctor or the hospital referring me but it seems worth a try if at all possible, rather than watching to see if the cords are developing.

AGain, best to copy to the Dupuytren's LJ, simply to make it easier for people who come after you to find everything in one place. (and you'll get all my posts on the subject together there)

Yes, other people in the UK have got treatment, about 30 now, but all via Dr Goode and he's on long-term medical leave.

You will need to be very persistant - read all my entries tagged 'Dupuytren's' to see what I mean.

Try
Dr Andrew Goodman (AGG): Lead Clinician Clinical Oncologist, Exeter RD&E. UK

Is he actually willing to do radiotherapy for Dupuytren's? If he is, please could you mention this on http://community.livejournal.com/dupuytrens_uk/
and I'll pass it onto the Dupuytren Society as well.

Sorry - Anonlymous again, finally logged in!

Hi!

Dr John Glees at Parkside Oncology Clinic, Wimbledon, has huge experience of treating Dupuytrens Contracture with radiotherapy. I have had my hands completely cured by him. It needs to be treated at a very early stage. Most GPs wait until the patient is debilitatated, when radical surgery is usually the only option. In caucasians 90% of the people wth the disease have progression to a severe condition. It is less in the Far East.

Early treatment really is essential to achieve a complete cure.

Thanks for the information.

I often hear that "early" treatment is extremely important but what is "early"?

Is it before cords develop? Before any bending over over the fingers?

I have what I believe is very early DC and have an appointment to see Dr Glees in Wimbledon coming up.

The earlier the radiotherapy treatment is done, the more likely that Dupuytren's will cease to ever be a problem.

I had it done when the cords had just started to develop and before any bending. I still have no bending several years later and the cords have softened a little.

However, later treatment is still beneficial, especially after surgery when it helps reduce the rate of recurrence.

If you post here - http://community.livejournal.com/dupuytrens_uk/profile - about your treatment, it will be interesting to read about it.

I'm considering RT treatment for my DC by Dr Glees of Wimbledon.

Has anyone out there been through this procedure with Dr Glees? Positive? Negative?

In typical cases does he offer a schedule such as:
Day1 zap, Day2 zap,... Day 5 zap
... then a gap of about 3 months before repeating the 5-day treatment:
Day1 zap, Day2 zap,... Day 5 zap

Thanks for any insights.

I was treated by a different doctor, but the schedule sounds similar to the one used in my treatment - which halted my Dupytren's without leaving me with any side effects.

It's several years since my hands were treated and I'm very glad I had it done.

Thanks for your answers Judith. Glad to hear that you are still glad you had the treatment after several years have gone by. I hear so many positive stories about RT treatment for DC but I remain sceptical. It seems too good to be true... almost like something out of Doctor Who :-)

My poor brother has suffered with Dupuytren's for about 10 yrs now and has had operations on both hands yet still his fingers are bent over and his hands have been slashed to pieces by the surgery.

I'm keen to hear of any negative stories from anyone for whom this RT treatment has not been so successful.

I think some people get dry skin as a result of RT, though it isn't always permanent. I think that's about the worst I've heard of.

have you read - http://www.dupuytren-online.info/radiotherapy_side_effects.html (it's part of a very helpful site run by a German Dupuytren's charity that collects research results to pass onto the public)

Also, there's a forum on that site for patients to share experiences.

My friend Wolfgang had lots of operations - on that hand that hadn't had RT. It was part of what inspired him to start the Dupuytren Society. He was nervous of RT too and wasn't sure whether to get his second hand treated. He didn't have it on his second hand until after many operations, but it did stop him needing any further operations after that. I got to know him when I was looking for the best treatment for my own Dupuytren's.

Ask your brother if anyone has offered him NA (needle aponeurtomy). It's less invasive than surgery.

If your brother has fingers that bad, then I think RT is the best bet for you. I'd like to offer you a downside, but apart from dry skin, I really don't know one. They've been doing it for around 30 years in Germany, so there's been plenty of time for problems to surface.

I was the first person in the UK to get RT for Dupuytren's and I had to fight for six months to persuade the NHS to do it. It was the research that convinced them to do it. I went to the radiotherapist with a load of printouts prepared for another battle. He took a look and said "That's fine", and treated me and a lot of people who came after me.

Thanks Judith for your informative comments. Dry skin is not something I would be too bothered about (I have pretty dry skin already). I guess there is always some level of risk of getting cancer but I don't fear this as a major risk.

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...

With your family history, I would assume you will develop full-blown Dupuytren's. It's rarer among women, but not that rare. Unless you're over 60, I'd get treatment now.

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.

Hello.My name is Erik Fuglseth,I live in Norway.
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

HI Erik,

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!)

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Radiation therapy

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