Radiation therapy for Dupuytren’s Contracture in the UK
by Judith Proctor, September 2007
I am probably the first person to be treated by radiation therapy for Dupuytren’s Contracture in the United Kingdom, so I thought I’d write about my experiences here.
It was back in December 2006 when I first became aware of a painful lump on my right hand. It was about 2cm below the base of my ring finger and it was most noticeable when I was typing. I assumed it was probably some form of repetitive strain injury. In the way of those who are embarrassed to ask about things that are probably something very trivial, I mentioned it as a throwaway remark to the doctor, as I was leaving after a consultation for something completely different. He said it was probably an inflamed tendon and that rest should help it (which merely goes to show that if you want something to be looked at properly, you really should make a specific appointment).
Rest didn’t seem to help much, so I mentioned the lump to a friend of mine who happened to have some free time and asked him if he had any idea what it could be. He went away and did a lot of research on the web and came back to me and asked about the shape of the lump and whether it moved around when you move the skin, or whether it stayed in the same place as the underlying structures while the skin moved above it. When I told him that the lump appeared to extend a little along the tendons and the skin moved with the lump, he came back and said that he thought I had Dupuytren’s Contracture. He also gave me a link to this web site of what is now the International Dupuytren Society www.dupuytren-online.info . I looked at the photo on one of the Dupuytren’s pages and went ‘Bingo!’ That could have been a photograph of my hand.
I printed out loads of information from the web site and went armed to visit my doctor. It was clear from careful reading of everything on the Dupuytren’s section of this site that radiation therapy was the most appropriate treatment at this early stage of the disease.
Hurdle number one. The doctor wasn’t interested in looking at my print outs. He looked at his own web site which didn’t seem to agree with my diagnosis. Although I couldn’t see the screen from where I was sitting, I could tell from what he was saying that his web site did not have information as detailed as that on the Dupuytren Society’s site and that he was assuming the growth on the tendons always went towards the fingers – mine was growing downwards, which I now know is quite common. The doctor was either Indian or Pakistani and Dupuytren’s is very rare in these ethnic groups. Although he said he’d heard of Dupuytren’s Contracture, he’d never actually seen a case.
I stuck to my guns, insisting that it was Dupuytren’s Contracture. He called in a second doctor (English ethnicity), who took one look and said it was classic Dupuytren’s.
Hurdle number two. The second doctor had never heard of radiation therapy being used to treat Dupuytren’s. Apparently the standard treatment in the UK is to wait until the fingers are badly bent and then to operate. I said I wanted radiation therapy. The doctor said he’d refer me to a radiologist to confirm the Dupuytren’s diagnosis.
The National Health Service moves slowly… A month or so later, I saw the radiologist who did an ultrasound scan and confirmed that it was indeed Dupuytren’s. He also discovered lumps in the palm of my left hand that I’d been unaware of, as well as more lumps in my right hand.
Back to the doctor again. “Please can I have radiotherapy?”
He referred me to a hand surgeon at the local hospital in Poole.
All these things take time (and I lost an additional month due to being busy working on other things).
So, a couple of months later, I saw the hand surgeon. He’d been told by my doctor that I was interested in radiotherapy (bonus point to my doctor), and he agreed to refer me to a radiotherapist.
A month or so later, I saw the radiotherapist.
Here’s where my luck took a turn for the better. Dr Goode (now retired) was used to treating benign growths with radiotherapy and although he’d never used radiation to treat Dupuytren’s before, he looked at my notes from the Dupuytren Society’s website and agreed almost immediately to give it a go. I was gobsmacked!
A couple of weeks later, I was having my first radiotherapy treatment at the Dorset Cancer Centre (it’s in Poole Hospital). I had two separate courses of treatment six weeks apart. Each course was five days long. Individual sessions were quite short, only taking a few minutes. I got to know some of the radiologists quite well; they’re a very friendly and welcoming group of people. I got chatting to one of them about music – he’s a guitar player — (one of the reasons I was so keen to treat the Dupuytren’s before the contracture became too far developed was because I play several musical instruments and this would become impossible if I couldn’t straighten out my fingers). For some of the last sessions, I took in a concertina and a bowed psaltery to show him.
I now have a couple of tiny tattoo marks on each hand (invisible unless you know where to look for them), which were made to allow the mask to be lined up exactly the same for each treatment. It takes a lot longer to line up the mask and position the hand correctly than it actually does to irradiate it.
The mask is to protect the rest of the hand from the beam. (The mask was not specially made for Dupuytren’s, hence it was rectangular rather than trapezoid. I imagine they’d make a trapezoid one if they get many more Dupuytren’s patients)
As one of the known possible side-effects of radiotherapy is dry skin, I was very careful to avoid soap and use the moisturiser recommended by the hospital (aqueous cream – which is dirt cheap and works extremely well). To date, I’ve had no skin reactions at all to the treatment.
The chance of getting cancer as a result of the treatment is extremely low. If you’re at all worried about this risk, read here and be reassured. Link
In November 2007 I had a follow-up appointment to see if there were any problems post-radiotherapy, but everything was fine.
My expectations of the treatment were cautious. I was hoping that the disease would have been halted in my left hand (with a small chance of the lumps vanishing).
My right hand was less certain. In the six or seven months between my friend’s initial diagnosis and the start of radiotherapy, the hand probably lost 5 degrees of movement.
German studies show that ten years after the therapy, 84 percent of the patients having Dupuytren’s disease in stage N (just nodules and cords) and
67 percent of stage N/I (hand bent by 1-5 degrees) show no progression of the disease http://www.dupuytren-online.info/radiotherapy_literature.html .
In theory, the degree of contracture is measured by how far forward the fingers are bent from the vertical. However, I’m hypermobile – it’s normal for me to be able to bend my fingers backwards by about 20 degrees. Thus, although I can still bend my fingers backwards from the vertical, I had in fact lost enough movement overall to possibly place me outside the N/I category of Dupuytren’s disease.
(The difference between my two hands was 10 degrees of movement)
My aim in seeking radiotherapy for my Dupuytren’s contracture was to halt, or at least greatly slow, the progress of the disease.
If radiotherapy now has prevented the need for surgery in five to ten years time, then it will have been more than worth it.
My advice to other people in the UK with Dupuytren’s is to be persistent. Don’t accept ‘no’ for an answer. Be polite, but persistent in explaining what you want. Go armed with data from the Dupuytren Society web site and if your doctor says that no one in the UK does radiotherapy,
Remember that radiotherapy is most effective in the early stages of the disease, hence it is important to get treatment before the contracture starts.
Looking back five years later.
I’m now writing in December 2012. Although there are people who have skin problems after radiotherapy, I’m not one of them. The skin on my hands is in excellent condition and I don’t need to use any form of moisturiser. I’ve never had a follow-up ultrasound scan to see what the Dupuytren’s looks like (it’s too expensive for the NHS to do for something like that), but as far as I can tell visually, my left hand is Dupuytren’s free. I still have full movement in my right hand. There has been no contracture yet, though my left hand fingers do flex more than my right hand fingers. I can feel a cord in the palm of my right hand, but it is soft rather than hard.
Most importantly to me, I can still play all my musical instruments. Let’s hope this happy state of affairs continues for many years to come.
My Dupuytrens is pretty much as it was back then, if not slightly improved. There’s a bit of thickening on one tendon on my right hand, but nothing more.
Not even the symptoms that helped me identify Dupuytren’s in the first place – I’ve no painful lumps on my hands.
Both my hands have excellent flex on the fingers and I’m still playing music. (I’m learning melodeon and tabor pipe at present.).