Current opinions on radiotherapy for Dupuytren disease
The role of radiation (radiotherapy) for Dupuytren disease is a topic of growing interest in both patients and physicians. One problem is the lack of data – it’s not yet known how radiation affects Dupuytren disease over the decades that follow. This is not lack of interest, just lack of data.
There are two very different scenarios of Dupuytren radiotherapy. The first is the treatment of early disease to prevent progression. The second is treatment at the time of a procedure to prevent recurrence (re-contracture). These are not just different scenarios: they are different groups of disease. People who have already had a procedure for contracture have more aggressive disease on average than people with early disease (nodule, no contracture, no prior treatment). It’s hard to study radiotherapy because the odds are hard to predict even without radiotherapy. One in ten nodules go away without any treatment. Some people never recur after only one operation. Others have crippling recurrences even after many operations.
What do patients think? Most patients want the simplest, least risky treatment, and only if they need treatment. Currently, most doctors tell patients with early Dupuytren disease to wait and watch. Some patients assume that it will never be a problem (which is possible), and go back to their lives. Some patients see pictures of severe Dupuytren contractures or know a story of a Dupuytren surgical disaster and are terrified that they will be crippled. For some, the promise of a radiation cure is so attractive that they come to believe that radiation is a guaranteed cure (it’s not) and that all other treatments are inferior (they’re not). Some are baffled and frustrated that their doctors don’t think the same.
What do doctors think? Most doctors want the simplest, least risky treatment, and only if their patients need treatment. The sticking point is that radiation doesn’t always work. With or without radiation, some patients will eventually need a procedure to correct the deformity of Dupuytren contracture. Why is this an issue? Procedures for Dupuytren contracture can be difficult and risky because Dupuytren disease scars the tissues and interferes with normal healing. This is a core conflict for surgeons because radiation alone can cause scarring and wound complications after surgery. This is particularly true for high dose radiation given for cancer, which is the only radiotherapy experience most surgeons have had. Many hand surgeons think “Why would I recommend radiation? Dupuytren surgery is difficult and risky. If it doesn’t work and my patient eventually needs surgery, the surgery will be even more complicated and risky, and my patient will suffer.” Some doctors refuse to discuss the issue. Some doctors refuse to treat patients who have had prior radiotherapy.
What is the data? None. There are no scientific publications on the actual risk of Dupuytren surgery after Dupuytren radiation. If a surgeon has a complication of Dupuytren surgery in a patient who has had prior radiation, it’s very tempting to blame it on radiotherapy even if it’s a known complication of Dupuytren surgery. Once this surgeon tells others, the story is retold over and over, especially if it’s dramatic. The result? Many surgeons believe that radiotherapy is bad for Dupuytren disease – even though there’s no actual data to support this belief and even though the dose of radiation is low compared to cancer radiotherapy.
I wanted to dig into the actual experiences of hand surgeons and surveyed an email list of members of the American Society for Surgery of the Hand using SurveyMonkey. 851 hand surgeons were invited. 153 filled out the survey.
Here are some survey results from these 153 board certified hand surgery specialists:
- All surgeons treated Dupuytren disease.
- Most had personally examined more than 100 patients with Dupuytren disease. Half had examined more than 500.
- 42 surgeons had examined patients after radiotherapy for Dupuytren disease.
- 18 had referred Dupuytren patients for radiotherapy.
- 14 had performed open surgery (fasciectomy) after radiotherapy.
- 10 had performed needle aponeurotomy after radiotherapy.
- 11 had used collagenase injection (Xiaflex/Xiapex) after radiotherapy.
- 3 had seen complications which they thought were due to radiotherapy
- Cold intolerance
- Diffuse swelling, pain and disease progression
- Poor wound healing
- Half were strongly opposed to radiation for early disease (nodule only)
- One-third were neither strongly for nor strongly against Dupuytren radiotherapy in early disease, severe disease, recurrent disease, or combined with a procedure.
- Three-quarters were either neutral or in favor of consulting a radiotherapist for a patient requesting radiotherapy evaluation.
- Almost half were interested in more discussion about this topic.
This is a very small sample of the nearly 4000 members of the American Society for Surgery of the Hand. This was an informal unscientific survey, but a good start.
- The number and type of complications were not dramatically different than what might be expected in the absence of radiotherapy (http://Dupuytrens.org/DupPDFs/2010_Denkler.pdf). This doesn’t mean that there was no effect, just that it wasn’t dramatic: more research needed.
- Attitudes are shifting. There were more reports of referrals for radiotherapy and more openness to radiotherapy consultation than I would have expected 10 years ago.
The International Dupuytren Databank (http://Dupuytrens.org/homepage/) will also collect patient experience with radiotherapy and eventually laboratory tests to develop more scientific ways to decide when Dupuytren radiotherapy should be used and how well it works when it is used.