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Most people with either Dupuytren’s or Ledderhose disease find that it never progresses to the point that it significantly reduces the quality of their life. Thus, they never need any treatment.
This is the one thing that makes the decision most difficult: do I bet that in my case the disease will not progress, or do I decide to take action and get radiotherapy that I might well not have needed? Because if I’m going to take action it might be best to move quickly…
The probability of a good outcome is increased if the disease is in its early stages – it’s statistically most effective when the irradiated hand has only tiny nodules or shows nodules and no cords, or cords that are only starting to appear.
A similar remark holds for Ledderhose disease although some anecdotal evidence suggests that the radiation may be more effective later into the disease than with Dupuytren's disease.
With Dupuytren's disease, once contracture sets in, the efficacy of radiation drops. Many radiation oncologists who treat Dupuytren's disease are reluctant to irradiate hands in which the finger is curled in towards the palm by more than about 10° because they know it won’t do much good.
Other considerations include your health history – have you been treated for something else using radiation, have you got other morbidities in the hand or foot that you are thinking of treating, do you happen to be more or less sensitive to radiation than most, and so on.
A FAQ can’t answer most of these questions – you’d need to talk to a doctor or a radiation oncologist about your case.
One health-related question that a FAQ can at least address is radiation therapy after a surgical intervention. Because the surgery does not do anything to stop the recurrence of proliferating fibroblasts – and hence, depressingly frequently, the rather rapid reappearance of cords and contractures – it may be beneficial to treat the operated area with radiation to kill off the proliferating cells. Whether this is true in your case, however, will be something for you to discuss with your radiation oncologist.
An FAQ can’t answer one of the most important questions of all - if it were to progress, how much would the disease interfere with your capacity to earn your living, with your hobbies and with your life in general?
The high cost of the treatment may make it unrealistic for you to consider radiation therapy. This will often come down to how good your insurance coverage is. There are many discussions in DART on this issue.
The best data we have come from Seegenschmiedt, M.H., Keilholz, L., Wielpütz, M., Schubert, C., and Fehlauer, F. (2012). Long-Term Outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase Ill Clinical Study. In Dupuytren’s Disease and Related Hyperproliferative Disorders, C. Eaton, M.H. Seegenschmiedt, A. Bayat, G. Gabbiani, P. Werker, and W. Wach, eds. (Berlin, Heidelberg: Springer Berlin Heidelberg)
In this study, 122 people opted not to get radiotherapy. 293 received 21Gy spread over 7 days in a single series, and 303 received 30Gy in two series of 5 days each. I’ll call these no, single and double treatments.
At the start of the study, the status of the disease was assessed as
- nodules
- slight contracture (up to 10º)
- contracture between 10º and 45º
- contracture beyond 45º
For comprehension I’ll call these four classes “nodules”, “slight”, “mid”, and “marked” contracture.
At the start of the study, the group that opted for no treatment comprised 76 people with nodules, 26 of whom (34%) saw their disease progress to slight contracture or further in the course of the 5 or more years following treatment. The group who had single treatment comprised 195 people with nodules, of whom 14 progressed (7%) and the double treatment group comprised 199 people with nodules, of whom 7 progressed (4%).
The no treatment group comprised 21 people with slight contracture at the start, of whom 14 progressed (67%). 50 single treatment people had slight contracture, and 21 progressed (42%). 16 of the 53 double treatment people saw their disease progress from slight contracture (30%).
Of the 16 people with mid contracture, 14 progressed (88%). 25 of the 43 single treatment people progressed (58%) and 23 of the 47 of the double treatment progressed (49%).
All 9 of the no-treatment people with marked contracture progressed (100%). 4 of the 5 single treatment progressed (80%) and 3 of the 4 double treatment progressed (75%).
In every case the people with no treatment progressed more often than people with a single treatment, who in turn were more likely to progress than the people with double treatment.
Similarly, in every case, the more advanced the disease at the start of the study, the more likely it was for the disease to progress.
If you have nodules now, then if you do nothing, these results suggest that you have 1 chance in 3 of seeing your hand get worse over the next 5 years.
If you go for radiotherapy, you have 1 chance in 20 of it getting worse.
If that therapy consists of 2 series of 5 days each, you have 1 chance in 25. A no-brainer if ever there was one.
The message is clear: get radiotherapy as early as you can and get 30Gy in two series of 5 days each. It won't necessarily work in your case, but you're doing something to decrease the probability of your disease progressing in the next 5 years.
The desired endpoint of radiation therapy is (a) to stop the progress (or at least delay it by several years) and (b) to reduce or stop the pain and itching.
Nobody claims that radiotherapy will reliably reverse the progress of the disease, or give you back lost functionality. It does sometimes happen, possibly more often with Ledderhose disease than with Dupuytren's disease, but if you don’t expect it, you won’t be disappointed.
If it does remit, then the underlying question is, as always: would it have got better without the radiation? And here the answer is, really, we don’t know.
There is evidence of cases of Dupuytren's nodules disappearing of their own accord, but the medical literature isn’t brimming with examples. Instead, we must rely partly on glimpses like this:
“The usual chronic form develops over months or years and may show exacerbations and remissions.”
Gordon, S. (1948). Dupuytren’s contracture. Canadian Medical Association Journal 58, 543.
“In nine hands during the period of observation there was temporary involution of nodules or bands originally present in the hands. Given an adequate length of observation time, no case of involution was permanent.”
Millesi, H. (1974). The Clinical and Morphological Course of Dupuytren’s Disease. In Dupuytren’s Disease, J. Hueston, and R. Tubiana, eds. (London: Grune & Stratton),
and
“My mentor, Professor E. S. J. King, perhaps Australia's greatest surgeon-pathologist and acute observer of the metaplastic potential of connective tissues, was adamant that he had in his own right palm a nodule of Dupuytren's contracture which disappeared after a few years.”
Hueston, J.T. (1992). Regression of Dupuytren’s contracture. J Hand Surg Br 17, 453–457.
The best, and most hopeful, evidence of remission comes from a study involving 193 men (there is no explanation of why only men participated) in Iceland.
At the start of the study in 1981, 75 men had nodules and cords (but no contracture). Of these 75 men, 8, that is to say almost 10%, had no sign of Dupuytren's disease 18 years later. Two of the 12 men with contractures had lost them over the same period, but still had nodules and cords.
Gudmundsson, K.G., Arngrímsson, R., and Jónsson, T. (2001). Eighteen years follow-up study of the clinical manifestations and progression of Dupuytren’s disease. Scandinavian Journal of Rheumatology 30, 31–34.
There’s clinical evidence that the earlier the treatment, the better the result.
In general, most radiation oncologists would probably be reluctant to recommend it after contracture has set in, and particularly once it’s past about 10°.
Radiation therapy is sometimes recommended after surgery to reduce the contracture. In this case the purpose is to prevent over-active fibroblasts from quickly re-establishing the cord. There is, as yet, no peer-reviewed study that provides evidence on the degree to which this improves matters.
The advice to wait as long as possible makes sense if you are thinking as surgeons do. Here is their logic.
1. A very high proportion of older people of European descent have Dupuytren's disease.
2. Most people who have it die before they find out that they have it. This is one of the reasons why people don't realise that anyone in their family has ever had the disease.
3. Most people who notice that they have the disease are in their 50s or 60s.
4. The progress of the disease in any given person is unpredictable and erratic. It starts and stops, spurts and dawdles. Nobody knows why.
5. If you take a large population of people who have nodules in their hands today, about 2% of them will have developed one or more cords in a year's time. If you take a large population of people with cords, about 2% will have developed a contracture of 10 degrees or more.
[If we start with a population of 10000 people with nodules in their hands, a year later there will only be 9800, because 200 have developed cords. A year after that, assuming nobody dies, 9600 (rounding off not to be stupidly precise!) will still have only nodules, 390 will have cords, and 4 will have developed contractures. In the 10th year, 8300 will have nodules, 1500 cords, and 130 contractures, of whom 3 will be debilitated by their contractures.
In the 20th year, the numbers are 6800 with nodules, 2600 with cords, 550 with contractures of which 11 are debilitating.
In the 30th year, 5600 still only have nodules, while 3300 have cords, and 1100 have contractures of whom 23 are debilitated by them - still assuming nobody has died since the first year, 30 years before. If the people in the population were roughly 50 at the first year, they are now 80.
In short, of a population of 10000 people with nodules, only 20 or 25 will be debilitated 30 years later. From a statistical point of view it makes no sense whatever for a surgeon to intervene at an early stage, when so few people will lose the use of their hand - many years later.]
6. Surgery is painful and can lead to complications including nerve damage for very unfortunate patients. Some evidence suggests that surgery, which stimulates the patient's wound-repair system, triggers fibroblast activity, which may manifest as Dupuytren's nodules in the same or other hand or Ledderhose in the foot. It certainly does nothing to halt the disease. It is generally a last resort.
As usual with this disease, everyone is different, so there is no single answer that will fit you. And as usual, there is no absolute certainty.
Prof Seegenschmiedt told me [Martin S.] that anyone who wants to keep track of the effect should not bother to measure and note changes more frequently than every 3 or 4 months. Some 3 years after my therapy, I would agree with him.
The radiation has done damage to the tissues at the base of, and just under, your skin. As time passes, damaged tissue at the base of the skin will work its way to the surface, and a couple of weeks or a month after the treatment is over, your palms or soles may become dry and red (particularly in the creases) and feel as if you have rather bad sunburn. The sunburn feeling fades quite quickly, in a week or 10 days or so, but your skin may remain dry for a long time - perhaps a couple of years - and you will appreciate skin cream with urea in it. You may also feel that your palms need some protection, and prefer to wear padded gloves for moderate or heavy manual work.
Generally speaking, the damage done to the tissues will heal rather slowly, and it may be a couple of months before you stop noticing a slight discomfort.
There are three possible outcomes to radiation therapy:
1. The therapy stops the progress of the disease completely. The most obvious change is that no new nodules or cords form, and if you were feeling tingling and buzzing under the skin, that stops - usually rather quickly after the treatment, perhaps 2 or 3 weeks, though the discomfort from the radiation may at first mask that change to some extent.
2. For a few people, the therapy actually reverses the progress and cords and nodules get smaller or disappear. This seems to happen more often with the feet than with the hands, and it is not very common in either. If it does happen, though, most people start to notice the improvement after 3 to 6 months.
3. For most people, however, the therapy does not reverse the progress, and in some cases cords and nodules get harder and better defined, and for a while may be slightly painful to the touch. The hardening and sharpening results when the tissue becomes less inflamed and swollen. The swollen tissue padded the nodules and concealed their exact shape. Less padding means you feel the nodules better and they feel harder. It may seem counter-intuitive, but this is a positive change that shows that the radiation has worked. This hardening and sharpening may even occur before you get the second set of treatments. You will come to appreciate that rugged feeling as the years go by, since it shows that the nodules are not inflamed, and therefore not active.
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Contact information provided below for radiation oncologists who have treated for Dupuytren's Contracture or Ledderhose . Comments or opinions expressed here or on DART are not intended to diagnose or prevent disease. Advice or comments should not be relied upon unless confirmed by your treating physician. No doctor-patient relationship is intended and members are advised to consult their doctors for medical advice. No representation is made about the quality or professional competency of the listed doctors. This listing provided as a place for you to begin your own research. If you find the contact info outdated or in error, please comment on DART where it can be corrected. You might also google the doctor or clinic to find updated contact information. Many of these doctors also practice at secondary locations that may be closer to you. Check their website. In addition to their clinical practice, many of these radoncs are also on the faculty of local medical schools where they teach radiation oncology. If you have doctor or clinic information not listed below, please share with DART so it can be made available to others looking for treatment in that location. some photos from dupuytrens.org Thank you.
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