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RT or "Wait and see"?
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12/19/2013 09:44
earmonster 
12/19/2013 09:44
earmonster 
Re: RT or "Wait and see"?

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.

12/19/2013 11:20
wach 

Administrator

12/19/2013 11:20
wach 

Administrator

Re: RT or "Wait and see"?

How about Richard Shaffer in Guildford?

http://www.dupuytren-online.info/radiotherapy_clinics.html

12/19/2013 17:32
cschieber 
12/19/2013 17:32
cschieber 
Re: RT or "Wait and see"?

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.

01/21/2014 16:29
Kieron 
01/21/2014 16:29
Kieron 
Re: RT or "Wait and see"?

Hi earmonster,

Thanks for your post. I was about to write almost word for word the same when I read your thread! This is also my first post on this forum, and like you I was diagnosed with DD a few months ago. I'm 37, and live in the UK. I have DD in my left hand (nodule and beginnings of cords) and I suspect my rock climbing passion has triggered the ailment.

After reading a lot of posts/blogs/websites I think it's safe to say everyone has a different story with varying outcomes on the alternative forms of treatment available. In a way I find it makes it very confusing to make a sound decision for whether one opts to wait/treat! I have lots of questions and concerns about the way forward.

I also had a consultation with a RT specialist earlier this month. I'd be keen to hear how you got on and how you now feel about RT if you've had your consultation. I found it beneficial although to be honest, I'm no further forward on a decision. I'm looking to read a bit more evidence on the potential benefits of RT treatment written in Prof. Seegenschmiedt's Clinical Trial paper 'Long-Term Outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase III Clinical Study' (my wife's a Clinical Trial's Manager so she can translate!). I hope this helps fill in some blanks, and I'll keep you posted.

In any case it'd be good to hear how you got on at the consultant and how you now feel about RT.

Best Wishes.

01/21/2014 18:47
spanishbuddha 

Administrator

01/21/2014 18:47
spanishbuddha 

Administrator

Re: RT or "Wait and see"?

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

01/21/2014 20:27
earmonster 
01/21/2014 20:27
earmonster 
Re: RT or "Wait and see"?

Hi there.

Thanks for your post.

It's actually quite odd to hear something of your journey, as I have a friend who is a rock climber by profession and I had my first real go at climbing (after which my hands were really painful) just a month or so before I noticed my first nodule.

I've now seen the RT specialist in Guildford who was really helpful. I still don't have any real answers, but his advice was that I could either go for RT now, or take photos, then review them and look for signs of progression in a couple of months. If at that stage the nodule or cords have grown I think I will opt for RT.

My biggest fear is that there may not really any more significant signs of growth before any contracture happens, and I don't want to miss the "window" for RT.

You can read more about my meeting with the consultant at my blog - www.a1creative.com/dupuytren

Do let me know what you discover through your further research.

Jon.

01/24/2014 09:50
Kieron 
01/24/2014 09:50
Kieron 
Re: RT or "Wait and see"?

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.

01/24/2014 22:23
earmonster 
01/24/2014 22:23
earmonster 
Re: RT or "Wait and see"?

Hi K.

Good to hear from you again.

When I spoke to Dr Shaffer, he suggested that the risks attached to RT are around 0.1% in normal cases, and that the early onset of this disease means that any RT would increase that risk, but only likely up to 0.2%, and as he mentioned, the chances of developing cancer in a normal person without any exposure to RT is around 25%, so in my mind, 0.2% isn't that drastic. Especially as this is still only a theoretical risk with no actual cases of cancer as a direct result of RT for DD.

As you say, the bigger concern for me was the issue that RT is a once-only procedure and I'd hate to have RT only to discover more nodules appearing that couldn't get "zapped". However, again, Dr Shaffer confirmed that as long as you only have the currently affected areas treated, there is no reason why other areas of the hand couldn't be treated at a later stage (he suggested that RT would include a 1cm margin area around the effected area on my hand.

I'm also aware that people who have uploaded photos of their RT in Germany have usually been surprised by the number of extra (smaller) nodules and cords that were identified for treatment. I guess this is because the German specialists have been examining hands with DD for a lot longer, but it does make me wonder whether the journey to Germany may actually result in currently-undiagnosed nodules being treated at a very early stage (that, and the treatment is considerably cheaper in Germany). After all, £2,000 for treatment of 1 hand in the uk doesn't seem too extortionate for the chance of maintaining full hand use, but if I ended up, over time, getting mulitple procedures of both hands (and potentially both feet - but no signs of ledderhose at present), suddenly the bill seems quite unachievable.

The other thing I forgot to ask Dr Shaffer is whether his RT treatment is e-beam or x-ray, as the e-beam treatment seems to be more controllable regarding depth etc. He did mention using lead plates, which would suggest the use of XRT, but I would probably check this before making any final decisions.

After everything seeming to calm down since Christmas, I've woken several times this week with the odd tingling sensation in my pinky and ring fingers again. Trying hand not to read too much into that, but it's so hard not to constantly check your hands for "things you might have missed last time".

Anyway, I'll keep you posted with developments.

Do let us know if you make any sense of the papers you're reading through.

J.

02/04/2014 16:48
earmonster 
02/04/2014 16:48
earmonster 
More advice?

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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02/04/2014 17:29
spanishbuddha 

Administrator

02/04/2014 17:29
spanishbuddha 

Administrator

Re: RT or "Wait and see"?

I have nodules and cords but no contracture.

You should be able to tell if you have cords by feeling and palpating your hand, and perhaps comparing it with your other hand. Cords are made of a type of collagen and are quite hard. The difficult thing may be to differentiate them from tendons under tension. Relax your hand into its natural curl, and then using the other hand palpate and feel the palm and up into the figures. Nice and soft, except for the nodule(s), or cords?

Do you have other symptoms, such as itching, crawling, aches, pins and needles? What about objective physical changes, from your log or photo record? Do you know your current extension capabilities as measured by spreading your fingers, hand and palm? Record it, and monitor it over a period.

It's really not for me to say, but I think you may be fretting a bit unnecessarily at this stage, as signs or symptoms of an imminent contracture would be more definite than you are reporting so far.

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