Hi,
Im new to this forum and looking for some advise please on getting RT on my right hand. My GP cant refer me as I live in Wales and all the RT clinics are in England. Ive been to a hand specialist when my first nodule appeared about a year and a half ago and he was not interested in Radiotherapy as he said I was too young to damage healthy tissue. His approach was to wait in till a contracture started and then use xiaflex. I thought this was fair enough as it seems it doesn't progress in some people.


Unfortunate mine has flared up and my main nodule has increased in size as well as a cord to my wrist and 2 more nodules have grown above it and I can feel one more under the skin just at the base of the pinky.
Im 27 and use my hand a lot for my hobbies (kitesurfing and climbing) and work (climbing up and down ropes and around structures with the use of power tools) which im going to give up as especially the vibration tools cause it too flare up even through gel padded gloves and my hand gets cramped and tight.


Does anybody have experience of managing to get RT in the UK privately please and what was the cost? It seems without a referral it will be hard to get it done on the nhs, especially as Nice don't really recommend it. It also seems as it is progressing that now is a good time to get it done.

Many thanks,
Waves

Thanks SB that's great info, i'm surprised at how expensive it is in the UK and unfortunate is way out of my financial budget.
Ive costed up Germany (Essen and Frankfurt )and like you said its getting pretty expensive with travel and accom. Has Prof. M.H. Seegenschmiedt completely stopped giving treatment now?

I'm also wondering if its possible to see a hand specialist privately who is pro RT and get a referral for RT on the nhs? I will also contact the uk Dups site and ask them. I read in another thread that nhs referral for RT can take a long time , I don't suppose you know roughly how long? It took 6 months from gp referral to see the hand surgeon so i guess it could take a fair while!

Many thanks for the help, much appreciated!

Hi
I’m at a similar research stage to you.
2 weeks ago I saw an NHS surgeon who “knows everything there is to know about hands” and he said “only surgery”, no option. He dismissed all other treatments for Dupuytrens. He also refused to discuss mechanical issues I have with my fingers (the top knuckles of my ring and pinky won’t bend and I can’t form a fist)

I then visited Dr Shaffer in Guildford on a free consultation and found him helpful and charming. He suggested I research my other hand problems.
His fees for RT are £2,000-£2,800 depending on which clinic you attend. It’s a lot of money but without the use of my hand, life will be difficult. I felt that 2 visits to Germany would be equally costly.

If you write to him and send photos he can at least tell you if it is worth coming along for a consultation. His secretary, Sue, is delightful.

My GP has made another appointment for me to see an Orthpaedic hand and wrist surgery next month. I will ask again about RT on the NHS.

let me know if you make any progress.

Good luck
Gayle

Stef- thanks for that Its good to know that he is still treating people.

Gayle- Yes it sounds like we had similar experiences with Hand specialist, ill follow your advise and make an appointment with Dr.Shaffer, thanks for the info. Illl let you know it goes and likewise if you could let me know know how you progress with the other Orthpaedic hand and wrist surgery that would be great, cheers.

SB- thanks for the link I will go back and show my GP the paper and also found this https://www.england.nhs.uk/ourwork/part-...alth/xb-faq/#a6 which suggests it is possible to have across the boarder treatment. My problem with the hand specialist was my age at having the RT, Duputers Sociaty UK have mentioned that some oncologists have a cut of point at 40years old but I may be able to find one that doesn't, so cross fingers.

After each round of RT what isi the aftercare procedure? Ive read that moisturising the hand and 3 months of high does Vit E helps, is there anything else? Any length of time where its best to rest ect?

Thanks all for the response, much appreciated