Bob’s Dupuytrens diary (UK)
Early 2005 – Age 52
First noticed a lump in my right hand just below thethumb in the area which I now know as the ‘Thenar’. It didn’t hurt so I ignoredit. Being a ‘bloke’ I dutifully ignored it for another couple of years, bywhich time I’d begun to realise that it had grown and that the lump appeared tobe running along the tendon. I’d also noticed that I was having to make someminor adjustments to common daily tasks such as taking the top off thetoothpaste or opening jars. Eventually I decided to take this pathetic lump inmy hand to the Doc – who suggested that it was probably either a tendon sheathinjury or possibly a giant tumour of the tendon sheath. The word ‘tumour’caused a mild panic for a second or two but he reassured me that it was arelatively rare but benign soft tissue tumour and unlikely to cause me any longterm worry.
May 2010 – Age 57
Noticed a small lump in the palm of my right hand justbelow the ring finger. It was slightly tender but I was at a music festival atthe time and had just been banging in some tent pegs, so I simply put it downto minor bruising. Doing my bloke thing again, I managed to ignore it foranother year before realising that the lump was actually getting bigger as wasthe lump under my thumb. I returned to the Doc who subsequently referred me toa hand specialist.
July 2011 – Age 58
The specialist immediately diagnosed early stageDupuytrens Contracture. Intent on keeping my spirits high, he went on toexplain that there was nothing he could do at this stage and that there was nocure. He cheerfully explained that it was likely to progress and advised me tocome back when my fingers were bent inwards and then he would operate. He alsoadded that surgery was only a temporary solution and that it would return.Yeah, thanks Doc.
April 2012 – Age 59
The lump in my palm is noticeably larger and slightly tenderto the touch and a small ‘pit’ has appeared. My thumb has lost some flexibilityand feels as if it’s bruised. In addition the joints on my index finger feelstiff and a new lump on the outside base of my index finger has appeared. Sadlythere is also a similar lump appearing under the ring and little fingers on myleft hand – probably been apparent for a couple of months.
These changes are beginning to affect a number of thingswhich I enjoy – playing the piano, (my R/H stretch used to be an octave + 2 –it’s now down to an octave), cycling (my hands ache after an hour or so on theroad). My ‘blokeish’ bravado is slowly starting to evaporate.
The thought of waiting for my hands to curl up beforecorrective surgery did not appeal, so I started looking at alternativetreatments on the internet. I stumbled upon an article written by JudithProctor on the Dupuytrens Society website – http://www.dupuytren-online.info/ . Judith had undertaken radiotherapy and had a positive response. She was alsovery supportive to me when I contacted her and urged me to act sooner ratherthan later. That was the best advice I could have had.
On www.dupuytrens-radiotherapy.co.uk I found a cancer specialist, Dr RichardShaffer, who was also treating patients with Dupuytrens at various centres inthe South East. Dr Shaffer examined my hands and was reasonably optimistic thatRT stood a good chance of delaying the development of the disease in my lefthand – as it was very early stage DP – and possibly also the lumps under thering finger in my right hand – which although were older, there was no sign ofcontraction of the fingers. He warned that the original lump under my thumb maybe ‘marginal’ as there was already nearly 5 degrees of contracture.
He also gave the obligatory caution that although small,there was the risk that the RT could also cause cancer. My decision to proceedwas weighed up with the fact that there were no known DP cases where this hadoccurred, balanced with the prospect of possibly being unable to do many of theactivities which I’ve taken for granted all of my life.
Sadly this treatment is not available on the NationalHealth, so I had to dip into my piggy bank…… and my wife’s piggy bank. The costwas £1,750 per hand, which is not cheap, but if it buys another 10 or moreyears of relatively full use of my hands then it would be a good investment.
The treatment, similar to other patients on this forum, wasconducted over 5 consecutive days and repeated again 2 months later. Eachtreatment takes approximately 10 mins. Because the treatment was in Guildfordand I live in Wiltshire, the worst part of the whole experience was the 2hrs+car journey each way every day.
The treatment took place in a dedicated cancer wing – somost of the other patients there were facing far more serious challenges thanme. I felt a bit of a fraud in comparison and I’d paid for the privilege too!
The process itself appeared very basic. Dr Shaffer marked upthe areas on my hands which were to be ‘zapped’. The radiologists then createda template from which they re-mark your hands each day. They then shield therest of the hand with series of lead plates. I confess I was a little surprisedat what appeared to be a rather primitive process. The radiologists do spend alot of time placing the plates and sticking them to your hand with sticky tape.They understandably leave the room during the RT itself.
One day, the lead plates had been sent away to bere-painted. Unfortunately, whilst the older flakey paint had been removed, theyhadn’t had time to re-paint them. The radiologists subsequently wrapped clingfilm round them! Not sure I felt totally comfortable with that, but theyassured me everything was fine.
After the first 5 days of treatment I was pleased to reportno side-effects – no redness, soreness or dry hands. I did feel very tired, butthat probably had more to do with getting up at 5.30am and driving 4-5 hrs eachday.
31st Aug 2012
The second week of treatment was pretty much the same processas before. If anything, a little disappointed that I didn’t seem to get thesame level of detailed diagnosis or mark-up that some of the DP patients whowere treated in Germany appear to have had – but in view of the fact that mostof the patients in the Guilford clinic were there for life threateningdiseases, DP is probably regarded as relatively low level?
Two weeks after the second round of treatment and the handshave developed some red and sore areas. Both hands feel very ‘tight’ and I’mexperiencing a slight burning sensation.
15th Sept 2012
4 weeks after the 2nd treatment and my hands aremuch drier. I’m regularly using E45 cream to combat this. A little blisteringand peeling, but the soreness has gone. The lump/cord on my left hand appears tobe softer and less prominent. The lump under the ring finger of my right handalso appears to be a little softer although the pit is still there. The cordunder the right hand thumb however is unchanged and the hand still feels quitetight. I can barely reach an octave with this hand now.
19th Oct 2012
9 weeks after treatment. Hands still dry but only using E45once or twice per day. The left hand appears to have stabilised but the righthand feels even tighter and I’ve lost a little more flexibility especially withthe use of my thumb. It’s the little things you notice – the way you used tohook your thumb under the seatbelt when you get in the car, but now need to usethe other hand to help – making adjustments to the way you hold a toothbrush orpick up a kettle. However, they’re still minor inconveniences.
Have developed ‘Beau Lines’ on three or four finger nailsand the top half of the nail is starting to fall off on a couple. A new smallhard nodule has formed underneath the pit on my right hand. It’s a bit tenderto the touch at times.
Had my 3 month consultation with Dr Shaffer and he didn’tseem concerned with either of these developments. He said the Beau lines were aresult of the RT and will probably grow out. The new nodule may also contractand soften. His 3 month evaluation was that everything had gone as well ascould have been expected. There were reasons to be optimistic for the lumpsunder both sets of ring fingers although it may be that we were slightly toolate to stop the progression of DP in the right hand thumb. It’s possible thatsurgery or maybe injections could be required at some point, although I’mfortunately still a little way away from that prospect at the moment.
So, am I still convinced that I did the right thing? –Absolutely. The risks were calculated ones and whether the treatment has beenfully or maybe only partly successful, only time will tell. What I do know isthat prior to the treatment, the DP was definitely progressing and the window of opportunity for successful radiotherapy treatmentis relatively narrow. Early treatment has the best chance of a successfuloutcome.
Since Nov 2012
(which is where my diary finished) – my left hand has not changed at all –which has got to be good news – whilst the lumps haven’t receded, they’ve certainly not progressed either.
The dryness in both hands has virtually stopped and I no longer use E45 cream.
By the end of March this year, I believed that the right thumb had tightened up somewhat and decided to go and see a local DP specialist (also a surgeon) for a consultation. As previously, I wish I hadn’t bothered. He poured scorn on the fact that I’d had RT and when I advised that my left hand had not deteriorated since the treatment, he simply said that that would probably have also been the case without the RT. His arrogance was very similar to the first surgeon/specialist I’d consulted – who only seemed interested in waiting until my hands were claws before operating.
He also said that the tightening up on my right hand could definitely be alleviated by some needle fasciotomy but didn’t feel that the contracture was bad enough yet. I probably wouldn’t go back to him anyway.
Interestingly, I’ve just returned from a trip to Thailand where it was very hot and humid and my right hand appears to have opened back up a little. Certainly doesn’t feel as tight as it was. Whether that is a result of the climate in Thailand I don’t know. Let’s hope it stays that way.
As for the other cords below my 3rd and 4th fingers in the right hand, there has been no noticeable deterioration since the RT.
Despite the specialists scepticism about the RT, I can only speak as I find. The cords in both my left and right hands have not deteriorated since the RT. The thumb probably has slightly. However, Dr Shaffer had advised that would probably be the case as there was already approx 5% contraction in the thumb prior to the RT.
Given the same circumstances, I would still have taken the same course of action.