I am probably the first person to be
treated by radiation therapy for
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
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 is growing downwards. He 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
Hurdle number two. The second doctor had never heard of radiation therapy being used to treat Dupuytren’s. Apparently the standard treatment in the
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
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 is 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
Long term side effects? I 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. http://www.dupuytren-online.de/downloads/Risk%20of%20cancer%20with%20radiation%20therapy%20of%20Morbus%20Dupuytren.htm
So, here I am, August 2007. I’ve finished the radiotherapy and I’ll have a follow-up appointment with Dr Goode in around three months time to see how well it’s worked. My expectations are cautious. I’m hoping that the disease will have been halted in my left hand (there’s even a small change of the lumps vanishing). My right hand is 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 and specifi cally http://www.springerlink.com/content/0nck81kvnt6dx5qy/
In theory, the degree of contracture is measured by how far forward the fingers are bent from the verti
cal. 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 verti cal, I have 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 is 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
with UK 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 DupuytrenSociety web site and if your doctor says that no one in the does radiotherapy, ask to be referred to Dr Goode at the Dorset Cancer Centre in UK Poole(for contact details see http://www.dupuytren-online.info/radiotherapy_clinics.html ). Remember that radiotherapy is most effective in the early stages of the disease, hence it is important to get treatment before the contracture starts.
Last, but certainly not least, I’d like to thank Douglas Spencer, the friend who not only diagnosed my
Dupuytren’s Contracture, but also found this web site for me.