Hi all,

I am a 35 year old male who went to visit Dupuytren UK this afternoon.

A background, I lost the tip of my middle finger (right hand) 4 years ago. Around 3 years ago I developed a lump in the palm of my right hand under that middle finger. A smaller, second module has since developed. I also have a knuckle pad middle knuckle of that finger.

I was told I have Dupuytren’s Disease. No contracture yet and all my flexibility measurements were okay other than I have lost 2cm extension in that middle finger (so can still raise it on table test but not as far back as by left middle finger ).

Doctor said there is a chance it may progress, chance it may not, although my risk factors suggest it might - my grandad had the disease quite bad and my mum has it (although no contracture at all).

Doctor - Dupuytren’s UK - suggested radiotherapy to see if we can’t halt progress. Being 35 and having a maternal side history of skin cancers (including pre-malignant moles removed on my own body), I am hesitant to do it.

Just wondering if anyone else has had radiotherapy here and if it worked for them (appreciate it may be it just doesn’t develop naturally). My queries:

- were there bad side effects
- did it help at all
- Is there a risk that doing it might impact the ability to have surgery in the future (e.g. due to thinner skin)
- Is it true that the forms of cancer it may cause later down the line aren’t typically serious skin cancers (e.g. not melanoma)
- Did anyone find it actually hindered their disease and supercharged it? I query the damage being done to the cells in the area.

Studies seem limited and I note radiotherapy isn’t offered in many countries. So want to do my research.

I’ve spiralled a bit mentally as I really fear I will end up like my grandad and lost the use of my hands (although he had it 50-60 years ago and never had any treatment).

Given I have no contracture (in fact, 2.5cm extension), I’m minded to wait and see how this develops as I understand you can have the treatment up until c.10 degree contracture. Also:

- lessen alcohol intake
- Avoid heavy lifting weights (+ wear gloves for light weights). Only found this out today as a risk factor
- Keep monitoring monthly so I can move early and quickly should anything change
- Keep an eye on the other fingers

Any positive words would really help :) I’m hoping it’s just wait and see, but if we need to act there are surgical options. I’m only 35 and just had a little baby, so just a bit gutted i might have a future where I can’t be the dad I want to be with her.

Thanks for reading - any advice / experience would be appreciated.

spanishbuddha:

---

Hi

Welcome to the forum. There's lots of experience here and on other sites including Facebook that will answer all or most of the questions your early searches have bought up. So, for now I'll just be brief.

It seems that maybe the finger injury preceded the first development of symptoms in your case. This is common, as it often develops after a wrist or hand injury or surgery. However it is usually slow to develop, and in the majority of cases does not lead to a contracture, but 35 is relatively early, but not unknown, to have symptoms. I would start a record,diary,log of symptoms and progression without being overly zealous about it, as it will provide a useful timeline of actual progress, if any, when discussing treatment if that does become necessary.

Down the line there are effective treatments, including as you mention radiotherapy. You may be considered by some to be too young for that, but others younger than you have been treated successfully with radiotherapy. The dilemma is, radiotherapy will 85% or so of the time stop progression, if done when symptoms show active ongoing progression, but often those symptoms and progression stop of their own accord anyway, or occur in cycles. Worries about cancer should be minimal as the dose is low, superficial and applied to an extremity. I have had radiotherapy in both hands 15 years ago or thereabouts, and almost symptom free, but am twice your age. Afaik it remains the case there are no known cases of cancer caused by radiotherapy for DD, and it has been used as a treatment for 30+ years or so, maybe more.

I lift weights, bike, play tennis, garden, modest DIY all with gloves, and baby the hands so exclude plumbing and serious mechanical car repairs.

There's lots more information in the forum and the website, but I am not sure what you mean by Dupuytren's UK, the BDS is your go to if you're in the uk. They have an active FB group.
https://dupuytrens-society.org.uk/

Happy to answer further specific questions here or by PM.

Best wishes SB

spanishbuddha:

---

Hi again

Alas it's hard to give guidelines on progression as it varies so much from person to person. But for the majority it is a slow developing disease with hardly noticeable changes except over years. Unless there is an injury or surgery and not always on the affected limb. Or you have what is called diathesis which is a case susceptibility to rapid progression.

It's possible your reduced flexion is due to an underlying cord or nodules, maybe you can feel it with the other hand? I have a finger like that and it has remained that way for years, although I have had RT.

Some surgeons are quite against RT, as they are thinking of RT used for in body cancers that leaves damage of fibrous tissue and scarring.

It sounds like you have a plan, monitor progress, get ready for RT if it develops, take care of diet and health, look after the hands and not worry too much. Sounds good to me.

Best SB

I can understand why this feels overwhelming, especially with your family history and having a young child. But the positive thing is you’ve caught it very early, before any real contracture has developed, and treatments/options today are far better than they were decades ago when your grandad dealt with it.

Your plan to monitor it closely, reduce possible triggers, and avoid rushing into radiotherapy without feeling fully comfortable sounds very sensible. Many people with Dupuytren’s progress very slowly, and some never develop severe hand limitation at all. Try not to jump mentally to the worst-case scenario. Staying informed and acting early if things change already puts you in a much stronger position.