Hi meunier

Welcome to the forum. I'm too in the UK and have had RT, done by the Prof in Hamburg. Presumably you are referring to Dr Glees or Shaffer? Both have good experience of using RT to treat DD, and in Dr Shaffers case there is an outstanding result treating LD as described on Gary's blog http://ledderhose.blogspot.co.uk. I think both can be recommended.

The only thing I would say is that, especially at your age, "wait and see" is a reasonable approach, when as you say you are currently a bit scared and likely to make a hasty decision. For the majority the disease progresses slowly and doesn't lead to a contracture. Perhaps keep a photo log, include other symptoms such as tingling, aches, cramps, etc, and if there are signs of increasing and progressive activity, make the appointment for RT, otherwise just carry on apart from keeping your weekly or monthly log. If you do want to be proactive and get it sorted, just be clear that RT is only effective during a phase of active and progressive symptoms, so more power to having that record that shows objectively just how active it is, or not. RT is not a prophylactic, is essentially a one chance treatment so the time of treatment needs to be well chosen.

I always recommend taking extra care to protect your hands from trauma, when gardening, doing DIY, some sports etc, otherwise just carry on.

Best wishes
SB

Edited 03/19/16 13:49

Dear Stefan and Spanishbudda,

Thanks so for your kind responses and advice. They are hugely appreciated.

It was indeed Dr. Glees who I saw.

It did seem to me to be a rather rapid development in that one day there was the lump .. a nodule - albeit small - and then I noticed a slight indentation some weeks later. Of course, the indentation may have been there before. Forgive my ignorance, but - by a cord - do you you mean a series of nodules? ... or something that is hard and strong that reaches up above the tendon to a particular finger? I'm not quite sure. A nodule shows itself above the skin does it not? A nodule is a noticeable lump of dimension however small right? I see what I sometimes think are circles in my skin now and wonder if they are incipient nodules. I have read about DD ... but I keep sounding like a complete dolt when I come to speak about it.

Can I ask: Dr. Glees said that it was the amount of radiation given that was key in terms of treating (i.e., stopping the progression of) the benign DD. Thus he said you could have it five days in a row or on alternate days for two weeks. He said both were equally effective. I spoke to the chief radiotherapy associate, DJ - who seems quite clued in - and he said that at least 30 percent of Dr. Glees' patients had treatments on alternate days for two weeks and they were equally effective. Everything I have read suggests the five day regime is mandatory ... and does not mention the latter as a possibility. Does anyone here have experience with the alternate day treatment and a successful retardation of their DD state/progress? Is anything written about this? I would be oh, so very grateful to know.

Bless you for your kind understanding in my regard. It is, I promise, HUGELY APPRECIATED.

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A cord is a hard rope like object beneath the skin that usually follows the path of tendons. It is a cord that causes a contracture. A nodule is a lump, also beneath the skin, but needs an expert to differentiate it from many other causes of lumps in the hand. Some pictures here http://dupuytrens-contracture.com/dupuyt...cture-pictures/

Your hand looks pretty good to me. Really good actually, wish mine was like that, hah! I would say from that there's no urgency, but that's based on a picture, I'm not a doctor, and have not examined you in person. But have seen a few hands with DD.

The standard reference for RT, developed by the Professor in Hamburg, and published in the literature is 5 consecutive days of 3Gy followed 12 to 16 weeks later by another 5 consecutive days of 3Gy. There are variations on this, and it seems like Dr Glees has developed his own. I cannot possibly say if it is better or worse, but would ask if or where he has published results of his protocol. You could always ask to be treated using the protocol I described.

However, I do think perhaps take a deep breath, start that photo log and keep a record of signs and symptoms. In other words wait and see. As Stefan said, the Professor in Germany often turns away patients who present TOO early! He did that with me on one hand.

Edit to add, the protocol I described, that totals 30Gy is 'one treatment'.

Edited 03/19/16 18:58

Hi meunier,

getting irradiation on 5 consecutive days is not mandatory, it's just the usual way. I guess that the 5 days orignated because the week has 5 work days and it has nothing to do with Dupuytren's. The total dose is important but the 30 Gy are not a must either. Some clinics treat with less but one study comparing 21 Gy with 30 showed that the 21 Gy group did not quite as well as the 30 Gy group. But group sizes were small and the difference wasn't huge. Fractioning, i.e. how the dose is split over days and the pauses in between does have an effect, too, but that is not as well researched. The 5 days, 2 months break, then another 5 days is the usual way of treating but not mandatory.

I myself had several radiotherapy treatments in different parts of my hands, 8 alltogether (not overlapping, that means the 30 Gy were nowhere exceeded). Results were good in 7 cases, in 1 case the nodule continued to grow. The skin in the irradiated areas became drier but not dramatically and I can't even tell whether this is still the case. I had no other side effects so far (my first RT was more than 30 years ago).

Wolfgang

To answer the question about RT you asked me. I had the regime of 15Gy in one week followed by 15Gy several weeks later, and it made no apparent difference at all! My hand continued to be sore, and signs of new nodules, and then ... slowly and imperceptibly it started to quiesce and eventually after 18 months I had to admit the RT had worked.

Other people have reported it helped almost straight away.

It is possible to have another one half treatment of 15Gy within the previously radiated field in exceptional and specific circumstances, but only the radiologist can advise on this. This is why you need to choose the moment of treatment well.

One of my hands now still has nodules, but is soft, no aches or soreness, so the DD appears to be dormant. My other hand also soft, has unfortunately had a recurrence of new nodules, this following an injury caused by handling tools. I am monitoring it before deciding what to do. I do have a small side effect, ongoing skin dryness with split fingers in winter. Easily managed with moisturising creams. I have a better collection of hand creams now than many women!

Personally I now avoid clapping or clap gently or on my thigh. Attended a concert last week, clapped by stomping my feet I have to say, at our age, it's really no big deal, just another easily managed health item to cope with, along with all the other aches and pains and things that stop working or decline. Glass half full attitude helps.