Fifty-three-year-old automation engineer Adrian didn’t know what the small lumps on his hands were until he researched the symptoms on the internet. As soon as Google revealed pages of information on Dupuytren’s, Adrian remembered his father having Dupuytren’s contracture, who, despite undergoing two operations, was left with limited movement in both hands.
Until this point, Adrian hadn’t realised the disease was hereditary, and although the painless lumps were not causing contracture or any restricted dexterity, he was keen to seek treatment before the disease had a chance to progress.
“I’d had the lumps in my hands for about a year, but as they started getting bigger, I began investigating what could be causing them. As soon as I read some information on the internet about Dupuytren’s contracture, I knew that was what I had the beginnings of, as my dad had suffered from this. I just didn’t realise it was genetic.
Knowing it was something my dad had put up with, I didn’t want things to progress like they had for him and was keen to do anything possible to head it off.
I saw Dr Shaffer’s website and was keen to get his view, so I went to see him in Guildford, where he examined the bumps in my hand and tested the extent of the range of movement. He said that I was an ideal patient as the disease hadn’t yet progressed too far. Dr. Shaffer explained that radiotherapy reduces the risk of the disease progressing from 60% to 20% and the need for surgery from 30% to 8%, and they understood that I wanted to give myself the best chance of halting the progression.
Although I was covered by private health insurance, my policy didn’t cover this particular treatment, but I wasn’t going to let this stop me. I knew that no Dupuytren’s treatment was 100% effective, but I wanted to give myself the best chance of stopping – or at least putting off – things getting worse.
My dad’s hands had slowly got worse, and he lost some movement in his fingers. He had a couple of ops on his right hand, but they were not particularly successful, and his hands always looked a little odd.
I work with computers for my job and didn’t want to be in a situation where I struggle to use a mouse – not to mention everyday things like tying shoelaces or opening jars. I wasn’t going to just sit back and wait for the Dupuytren’s to get worse before getting help, so I decided to pay for the treatment myself. It was a sizeable sum, but I tend to think ‘what price your health?’.
Although I live in Basildon in Essex, I work all over the country and was pleased to hear that under Dr Shaffer’s care, I could be treated in any of a number of centres. At the time I worked in Solihull and was staying in Birmingham during the week, so I decided to have the treatment at Cancer Partners UK’s centre in Little Aston. It was only 20 miles away from my work, and I was able to make appointments at the end of the day, which meant I didn’t have to take any time off.
I had five days of treatment, followed by five more eight weeks later. The radiotherapy was exactly what I expected. It was very straightforward; it took about five minutes to set it up, 30 seconds to treat, and then off I’d go. I always got the appointment times I wanted, and if I was late because of heavy traffic, it was never a problem. I was very impressed with the efficient and friendly staff, there was no hanging around waiting, or feeling rushed.
I’d been warned that there may be some side effects, but all I had was some slightly dry skin which was sorted with some hand cream.
A colleague at work has Dupuytren’s, too, although he thought it was arthritis until I explained. He’s not bothered about it and is happy to just keep an eye on it. I guess everyone is different, but I’m pleased I’ve had the radiotherapy treatment to try and hamper any development of the disease.
As the treatment is to stop things progressing, I don’t know if it has worked. It’s still early days. I guess I never really will, as it may be that the contracture wouldn’t have developed anyway… but I wasn’t willing to just wait and see, and risk ending up with hands like my dad.
*Please note that results may vary for different people.
