Hi there.

This is my first post on these forums.

I am 37 (living in the UK) and was diagnosed with a dupuytrens nodule in my right palm around 1 month ago.

Since then I have been in a state of panic about how this disease will progress.

My GP told me that it may not advance and that if it did, my fingers could be operated on to straighen them, and also that "at least I now had something to fiddle with in dull meetings", which I didn't find particularly helpful. I also asked her about radiotherapy which she said she hadn't heard of and that RT should only be used for life threatening illnesses.

Since this "helpful" diagnosis I have privately visited a hand surgeon who specialises in Dupuytrens

He examined my hands and told me that I currently only have 1 nodule in my right hand, and it was more than 50% likely that I would get progression, and his advice was to wait and see what happened.

He suggested that if I see contracture start within 3-6 months I should get RT (which he said can be very effective) but if contracture takes more like 2 years, to get NA and then, only if rapid recurrence of contracture happens, to then get RT.

I've also been in contact with Prof. S in hamburg and a radiotherapist in England via email who have both suggested that RT only works BEFORE any contracture starts.

So here's my problem:

My family are now convinced that I should "wait and see" what happens. I've booked a consultation with the radiotherapist in England for mid January, but I'm concerened that I will still end up with mixed messages re. best treatment.

Also if i did pursue RT in the UK, it would be far more expensive than in Hamburg.

Does anyone have any advice? I really am in a quandry.

Thanks

Welcome earmonster

Wait and see is a perfectly reasonable option, as in many cases the condition proceeds slowly, often goes dormant, and may not lead to contracture. However, since you are relatively young it's worth keeping a regular eye on it, perhaps a photo log and record symptoms, such as pain, tingles, aches, stiffness, etc.

Do you have any of the risk factors listed on this site, that may make you more predisposed to it progressing?

RT does not treat or straighten contracture. It can be done later in time in the disease, after a contracture is corrected, via NA, Xiaflex or surgery. RT is effective when the disease is active and progressing, as indicated by symptoms listed above and current physical changes in the skin, nodules, cords. The cyclical nature of the disease means 'early' as a concept applies to early in an active cycle. Edit to clarify that for most people, early does mean for them before a contracture has developed.

Unless you find somewhere willing to treat with RT on the NHS, expect to pay £2,000 per hand or foot privately in the UK. In Germany the treatment is about €950 but you would have to add travel, lodging, spending and time off work.

Best wishes

Edited 12/16/13 23:59

Thanks for your responses.

What I didn't say in my initial post is that within the last month I have already developed really tight skin from my pinky and ring fingers to my palm. It seems that if I relax my hand for a short time, when I come to extend my fingers they are really tight and painful.

Although I don't have a permanent contracture (according to the "tabletop" test) I have to constantly work my fingers to keep them straight, and certainly have significantly reduced flexibility when my palm rests on the table and i try to raise my pinky or ring fingers upwards.

I'm aware that this may sound a little like paranoia, but the tightness in my fingers is a constant reminder that something isn't right with my hand, and it does seem to get getting worse, even if just sensation-wise.

I'm concerned about the reports I've read of NA and Xiaflex both causing rapid recurence and nerve damage, plus added complications afer multiple procedures on any specific finger, whereas RT seems to stop progression and even soften nodules if treated early enough.

I guess the question I need answering is, does RT on just one nodule/cord mean potentially paying out for more RT in coming years on other nodules? and can RT be done effectively directly after NA to stop the cords re-forming?

It seems that without the RT option, I'm likely to spend the whole of the rest of my life needing repeated operations to "fix" my fingers when they contract, which could become less and less effective over time.

Thoughts?

For both, NA and Xiaflex, nerve damage is a very rare exception. Recurrence will happen after both procedures because they are no cure, just treating symptoms. It depends what you consider rapid: everyone is different but 2-3 years might be the average recurrence period (guessing, not head to head studies available yet). But true, in unfavorable cases the contracture might be back after half a year.

Radiotherapy is no cure either. It slows down the proliferating process but it cannot guarantee that the disease will be coming back, in the treated area or outside the treated area. That's unfortunate but until a cure is found we have to live with it.

So far for the bad news. The good news is, as callie wrote, that most people with symptoms of Dupuytren's will never need any treatment at all. Maybe only 15 - 20% will need some kind of treatment at some point of time. Some are less fortunate and will need several treatments.

Wolfgang

earmonster:

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... I'm concerned about the reports I've read of NA and Xiaflex both causing rapid recurence and nerve damage, plus added complications afer multiple procedures on any specific finger, whereas RT seems to stop progression and even soften nodules if treated early enough.
...

Thanks again for your responses. It is really good hear your reflections on my questions.

Just to bring a little clarity, I do have pitting just above the nodule in my palm. I assume this is partly why the skin feels so tight towards my fingers?. The one major cord I can feel runs backwards from the palm nodule towards my wrist. The tightness in my fingers is also exaggerated when I bend my hand back at the wrist. Would this make sense?

It all seems to have happened so fast. Just one month ago I had to let people touch my hand to notice the nodule, whereas now it is glaringly obvious and all the skin looks so taut. I also wake up several times each night tingling in my pinky and ring fingers on both hands and with a noticeable "click" when I move my right pinky forward and back, which doesn't hurt and fades throughout the day, but does cause this to be the first thing I think about every morning - not helpful!!

Hopefully the Radiotherapist will have some more advice when I see him mid-January. Certainly it would seem daft to travel to germany to visit Prof S. (for the initial consult) when I can get this in the UK for free.

Edited 12/19/13 09:25