Hi there.

I haven't managed to find anyone who does RT on the NHS.

Currently I'm looking to get a consult in Guildford and then potentially pay for treatment (roughly £2000 per hand).

It would be amazing if I could find somewhere that would do this on the NHS.

We live in hope.

At those prices it may be worth your while to go to Hamburg. Because you are so young, it might be prudent to wait to see if things get worse before RT. Prof S would be able to make that determination. When I was there in April, he found nodules on my feet but said they weren't ready for RT and only did my hands.

I know it's hard but try not to be too anxious. My DD started when I was in my mid 30's as knuckle pads that self resolved after a few years. It then went into remission until I was about 50 and has been progressing. in fits and starts, ever since, despite RT. You could go many years with no further progression. Best of luck.

Hi Kieron

You are relatively young for RT since it is basically a one shot treatment, and the risk may be greater with more life span years remaining. I wonder if the doctor you saw commented on that? Also you don't say the rate of progression, as RT is most effective during an active phase when nodules and cords are growing, usually accompanied by other symptoms. There are a handful of places in the UK we know of that have performed RT on the NHS, but with tight resources and skills, and despite NICE guidance, little consensus on its use in the UK, the only real choice is via the private clinics listed on this website or perhaps Germany.

I had RT on one hand a couple of years ago and it is now dormant. Would it have gone dormant anyway is one of the questions that makes it difficult to make a decision about whether to have the treatment. I had it appear on the other hand a year ago, progressing in a few months to two cords, so had RT start after 8 months of waiting to see what would happen. I share that just to give you an indication of my own decision cycle. Now this newly treated hand seems to be quieting down, tenderness has reduced, and other symptoms abated. It's too early to say if I t has worked.

I always advise people to keep a log including photo record so that you have objective evidence of the rate of progression. I also advise people to protect their hands, but am not sure what to advise a rock climber. You should ask, I think, if RT might weaken ligaments, tendons, pulleys which I guess are of utmost importance if you wish to continue with the climbing.

Best wishes

SB

SB/Jon,

Thanks for your responses. I've been busy the last few days (kid's birthday!) hence the delayed response. SB, my DD is active. I like the advice about the log, and will get going on that. It's sometimes hard to determine between basic paranoia and honest assessment when looking at your own symptoms!

I agree with my age and going for RT. My concern's are two fold. One, it's a one stop shop as you say, and two, given my age I slightly increase the cancer risk of such a treatment. If only RT treatment had been going for 10 more years than it has, and more clinics had undertaken controlled trials then we'd all have some good data to go on when considering the benefits and risks of RT.

In any case, I'm going to sit tight, log the development and get my head around this latest pape, and as mentioned I'll share what I (and my wife) find statistically.

As for the climbing, I've stopped for now. I spoke to the oncologist (Dr Shaffer/Guildford) and he assured me that my tendons and ligaments will not be adversely damaged by any RT exposure. Once any side effects (skin dryness etc) settled down then I should be able to continue with climbing. However, that's the main question...would I have DD if I hadn't climbed in the first place? Who knows? But what's done is done and it's better to look forward. In any event, I have no symptoms in my right hand so I'm currently of the mind to halt climbing for the time being and hopefully safeguard that hand. To be honest, that's been one of the toughest decisions to make to date, as DD has essentially made me decide to stop a big part of my life's enjoyment.

There's an interesting Clinical Trial paper to read if you're interested. It asks 'Can rock climbing lead to Dupuytren's disease?' and the link is: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1725323/

The stats produce a robust argument that there is a relationship between the sport and early onset of DD. However, there's also evidence of DD appearing in individuals where they strain their hands in whatever they do, be it: kayaking, bricklaying, etc, etc.

Jon, if that was your first time climbing your hands would be sore. I remember it well! It's fairly intensive and I suspect the pain and clicking in your fingers will have been strain on your tendons. When I was pushing it, I used to get clicking in my fingers regularly. Quite common unfortunately! It settles down with time and hopefully that's what it was for you.

I also read your blog and can relate to a lot of the concerns and feelings you are having. Please keep it up. It's good and if I'm relating to it, I'm sure others are also.

So....still no real decision made. Still struggling to get my head round it all also. But as I keep telling myself, there's a lot of people with far worse issues to deal with.

Have a good day.

K.

Hi again.

Since I saw Dr Shaffer in January! it's hard to tell whether my dd has advanced. This mainly because, although Dr Shaffer marked the nodule and (potential) cords on my hand, I don't really know what to look for in terms of cords developing.

My bigger concern is, will I definitely see new cords or nodules before any contracture may start? Most people on these forums suggest that they developped cords AND contracture, so I'm not really sure if I could end up waiting to see cords before RT that may never become visible before it's too late.

I've also noticed over the last few weeks an odd "trench" running from my palm to my thumb when my thumb is extended. I don't know if this is a sign of DD, or just a age thing.

I've attached a couple of photos to this post. One with my hand in a neutral postition where you can see the original nodule, and the other with my fingers clenched. There are definite lines under my fingers in this picture, but I have no idea whether those are cords or not.





So, should I expect to see a noticeable difference (obvious cords or new/changed nodules before any contracture starts?

Any advice on this would be wonderful.

Thanks.

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