Personal experiences: Nigel
Radiation therapy for Dupuytren‘s Disease in Essen
by Nigel, January 2008
Starting Ocotber 2005 I had radiation therapy at Alfried Krupp hospital in Essen, Germany. Here is my story but before getting into details I would like to add that the staff at Alfred Krupp hospital, especially Prof. Seegenschmidt and Frau Kerstan (now Goebels), were brilliant. Thank you!
Treatment 1A: 10th – 15th October 2005
I had DP in my left hand. A band running from the palm to the base of the little finger. The band had produced a small pit at the palm crease. The band felt about 0.8cm wide in the main palm. There were a couple of small nodules between the crease and base of the little finger. Treatment began on Monday 10th October 2005 for 5 days. At 1pm each day most of my palm and the base of the fingers of my left hand were given radiotherapy for 3 minutes 6 seconds. I was seated in a small room with a lead shield around the rest of my left hand and over my waist/groin area. I did not feel any strange sensation during the irradiation. After completing treatment my hand felt completely normal for about 10 days. My mum said the swelling of the band was noticably smaller after only 2 days from completing the treatment. After 10 days I felt some occassional tension in my left hand around the location of the band. After about 14 days the main creases in the palm were quite red. There was no pain. I assumed this was the dead cells being broken down and being removed from the hand by my blood stream. The two nodules between the palm crease and little finger became easier to see, possibly because the swelling caused by the active ‘nasty’ cells has now stopped. From day 16 (ie 16 days after the last RT dose) my hand was noticably better – the pressure just suddenly seemed to release and I had the sensation of full flexibility returned – I could twist the hand and stretch it and not feel any pulling/restriction. That area of the palm now felt more like your skin does when a scab is on it – you feel there is something a bit alien there but it feels more like an irritant than anything restrictive. It is now 5 weeks after treatment commenced. There’s no pain but still a bump. The two nodules may be growing. The main lump still seems stable. The palm seems slightly darker than the other hand, the palm creases also redder. There is no dry skin. After 6 weeks a couple of small skin blisters appeared along the skin creases. They flaked off after a day or two. There is now some dryness of the skin – looks like chalk in the creases of the palm. There is no irritation. The skin does not appear dry when waking in the morning. I have not bothered using any hand lotion, etc. After 10 weeks there is very little dry skin. The cord is still there but much softer and flatter than before. Only the nodule nearest the little finger has not been reduced – on the contrary, it still seems to be growing.
Treatment 1B: 9th – 13th January 2006
The second and final set of 5 day’s radiation therapy began on Monday 9th January 2006 in Essen. Again, there was a daily dose for 3 minutes. Again, the German medical staff were extremely punctual, pleasant and efficient. I was asked on the 3rd day if there was any pain, as sometimes patients report this during the second batch of treatment. I, however, had no pain. No pain until a slight burning sensation after about 2 weeks (21st January 2006). The hand has been a little redder and drier in the palm over the last few days. Today the redness and slight burning are occurring around the remaining nodule near the base of the little finger. Over the weekend this has got a little more painful, the area red and quite hot to touch. Wolfgang says that this has been reported occasionally. This second set of treatments definitely has more physical effects than the first. The skin seems quite a bit roughter, very dry skin over half of the palm, aches more (26th January 2006). 29th January 2006: A red mark has appeared in the palm exactly the same shape as the template used to shield the rest of the hand during irradiation. Occassional burning sensation. I’m now applying hand-cream so dryness is negligable. 3rd January 2006: First blister came. About 1cm square. It was not very deep. After picking off there is new red skin underneath. 6th January 2006: Second blister came. Same size, etc as first. Red mark of template is still visible but only slightly. Area is quite dry. I regularly apply a little bit of moisturiser. No pain. Previous cord and nodules seem about the same. 12th February 2006: A few more blisters today. They were easily pulled off. There were 3 about the size of a Euro coin. One along the palm crease, one where the little finger joins the palm, and the other half-way between the two. The invoice also arrived today – 402 euros for everything – consultations (including Prof Seegenshmidt ringing me at home), 10 radiation therapies, follow-up consulation. 15th February 2006: The red mark where the template was has now disappeared completely. There are a few slight dry skin patches that are flaking today.
3 Month Checkup – 26th April 2006
Visited Essen for a follow-up appointment with Prof. Seegenschmidt. He confirmed everything had gone well – the DC has been halted and the symptons somewhat reversed. The cord is now much flatter, the small pit that had formed has now gone (since the cord has flattened quite a lot). The nodule is a little softer and no longer hurts.
1 Year Checkup – 30th January 2007
10am on Tuesday 30th January 2007. No progression of the disease at all. The thin band that had extended from my left palm into my left little finger has gone. The main lump in the left palm has flattened and turned fairly soft. There are two small lumps where the two nodules were at the base of digits 4 and 5. Neither has progressed. The original pit has flattened also. The pattern of skin in the palm around where the pit was has now probably altered permanently. The only side effect is more dry skin in my left palm than my right. Prof Seegenschmidt recommends handcream with 4% urea (helps absorption) to be applied before going to bed each evening. The brand I got (in Esses) was Excipial.
Update August 2008
My hand is still healed, the DP has not progressed at all. Prof Seegenschmidt did detect it in my right hand also but, since the radiation therapy, there has been no progression at all.
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 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.
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 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 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.
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 cal 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 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 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, ask to be referred to Dr Goode at the Dorset Cancer Centre in Poole (for contact details see http://www.dupuytren-online.info/radiotherapy-clinics ). 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.