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RT or "Wait and see"?
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12/16/2013 20:01
earmonster 
12/16/2013 20:01
earmonster 
RT or "Wait and see"?

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

12/16/2013 20:30
Seph 
12/16/2013 20:30
Seph 

Re: RT or "Wait and see"?

earmonster; In my view the advice you got from your GP and the hand surgeon was the right advice. You are 37 and you only have one lump. That might be all you ever get.

You may get more nodules over time but your best option right now is watch and wait. Don't change what you are doing in life and don't interfere.

You will see on this site that many, including me, believe that the more you interfere the greater the risk of stimulating the disease.

I first developed nodules in one hand in my late teens. I did not get any contraction for nearly ten years. I had surgery in my early 30's and, almost immediately, I developed symptoms in my other hand. I have now had NA 5 times and I expect to get treatment on an annual basis but I do notice that I get a burst of new activity every time I get treatment.

Remember this is a non life threatening disease that will probably not cause you any real problems. You might be unlucky and it might get aggressive but even then it is not life threatening. If this is the only disease you get in life you are lucky regardless of how it progresses.

12/16/2013 21:35
spanishbuddha 

Administrator

12/16/2013 21:35
spanishbuddha 

Administrator

Re: RT or "Wait and see"?

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

12/17/2013 07:16
newman 
12/17/2013 07:16
newman 

Re: RT or "Wait and see"?

Hi Spanishbuddha forgot to mention having a good time in Germany. Treat (radiotherapy )when the disease is active and when you can feel a so called funny itching feeling in the hand.

Edited 12/17/13 11:01

12/18/2013 16:04
earmonster 
12/18/2013 16:04
earmonster 
Re: RT or "Wait and see"?

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?

12/18/2013 16:50
callie 
12/18/2013 16:50
callie 
Re: RT or "Wait and see"?

Many (perhaps most) people never have to have a procedure due to Dupuytren's. Often the disease goes dormant or is not bothersome enough to have something done. Remember that procedures can become a catalyst for further Dupuytren's growth.

12/18/2013 17:22
wach 

Administrator

12/18/2013 17:22
wach 

Administrator

Re: RT or "Wait and see"?

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:
... 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.
...

12/18/2013 17:27
spanishbuddha 

Administrator

12/18/2013 17:27
spanishbuddha 

Administrator

Re: RT or "Wait and see"?

It's difficult to help with diagnosis via the Internet, and problematic, especially as IANAD. I think based on what you say I would ask for a referral to a hand specialist. That will, in the UK most likely be a surgeon, who will think that without a contracture you are wasting his time. But the purpose would be for him to examine, feel, palpate, your hand and diagnose the existence of nodules and cords that you and GP maybe be unaware of, and the stage you are at. That way you would get a better idea of the area needing radiation, and if RT is deemed appropriate at this time. You say the skin is tight, unless there is pitting that is not a description of DD, unless it's just a poor description; it's the cords that restrict flexion and contracture. More the reason to get an experienced practitioner diagnose the condition and stage. Get a private consultation if needed.

The private UK doctors advertising RT do have some experience of diagnosing before treatment, and that may be another option. I myself in your situation went to Germany and paid myself, but the visit is not for treatment as such, but diagnosis and then treatment if confirmed and the timing is right. So in my case one hand was treated, and despite symptoms sounding similar to yours, the other was not (until 2+ years later). The log or record I mentioned, include flexion in your case, will help confirm progression, or not.

A further clarification. Regard RT as a one chance treatment. That's another reason it's important to get the timing right. A further treatment, or half treatment, may be done if the doctor/radiologist agrees.

12/18/2013 21:59
earmonster 
12/18/2013 21:59
earmonster 
Re: RT or "Wait and see"?

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

12/19/2013 07:55
spanishbuddha 

Administrator

12/19/2013 07:55
spanishbuddha 

Administrator

Re: RT or "Wait and see"?

Let us know what the radiologist says. It does sound like it's active and RT is a possibility for you. In your case the question is will it continue to progress or now settle down. Keep that log. Can you share, privately if you don't want to put it here, which hospital or CCG will treat you on the NHS? There are so few that we know about. Exeter, Manchester, Norwich, so far.

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