I have decided to document what happens to me in this blog in the hope of helping others. And get advice for me.
I live in Sydney, Australia. 53, male. I am in good health. I am the youngest of 7 children. I am 5th generation Australian but am of Germanic/ north European descent.

Just 6 weeks ago (late May 2014) I noticed a small lump in the palm of my left hand under, the skin. Hard but no pain and no irritation. So not worried. Last week I was feeling the lump thinking it should not still be here and thought it maybe larger and slightly raised/bulging (only a third the size of a pea). So I googled. Ah Dupuytren?? So I send an email to all my siblings (of which I have two brothers and four sisters ranging in age from 55 to 65). One sister confirmed (who is a gp) that our paternal father had the disease and his sister.(Apparently our grandfather had contracture in both hands from late sixties and he died at 76). My father died at the age of 52. I don't remember him having it but one sister suggest he may have the start of it. One brother (57) says he has a lump in his palm but has not had it diagnosed. I visited my other brother (61) and has no signs. My sister (63) visited the hand surgeon that day on another matter. Although there in no contracture or nodules he said he could feel hardening and the start of DD.

So the day after googling I got an appt with a highly respect hand surgeon in Sydney. He had a quick feel. Said I definitely at had DD as he could feel hardeneing, see and feel the nodule and with the history in the family making it conclusive. He could feel hardening in my right hand as well even though there is no nodules. He said surgery is only an option if there is contracture. He explain very clearly all treatment options and the unpredictable natural history of DD and of the risks with treatment. But told me my only present options was radiatherapy (RT) or wait and see development and then RT if it is progressing.

So that week I went and visited the Prof of Oncology Radiology and was seen by a radiologist, then a hand therapist physio and then the prof. (Note that in Australia this is a Public Health Service and is free. As would RT) They all looked at my hand. They all took notes. They all told me what could be done. But I had to decide if I wanted RT. So I had to decide wether I wanted to wait and see the progression or just go ahead with the RT.

It's a big decision. All the studies seems to show that RT is more effective in the earliest stages. And possibly the earlier the better. But then there is the catch. What if it doesn't develop. What if nothing changes over time. I don't want my hand radiated unnesecarily. Or is the risk of having bent fingers not worth taking the small risks involved with RT. And then there is the cases where RT was not effective. There is some posts in this forum where some have said that their DD got worse after RT. But I will discount that (even though it's true and helpful to know) as it is not part of a controlled study.

So to help me decide I am plan to do two things. I am going to dig up as much ancestry as possible on my family and get details of at what age and how quickly it progressed in the family. I suspect this will be the best indicator. As my father died at 52 we have no indication from him. My father had one brother. He moved to France as a young man. I have now contacted my cousin (his daughter) in Paris. She confirms that her father has heavily bent fingers at the age of 87. But they did not know it was a disease and that it had a name. They put it down to old age! So I am awaiting more detail on when he first had signs of the disease and how fast it progressed. I am also waiting to see if his one son has developed any signs of DD. It is interesting that my 61 yo brother has no signs of it at all (he is a cab driver, as was my father. And I have always been an office worker). Await and see what my 57 yo brother has.

The second thing I plan is to get a second opinion. I found the way my hands were examined by the hand therapist, the hand surgeon and the doctor was very (excuse the pun) very off-hand. No tools, graphs, photos, comparison charts or images of any kind were used. I thought at least they would take an accurate recording so if I returned they could compare progress. And they told me there was hardening in each hand but it was not mapped on any hand diagrams for their records.

If I am going to have my hand bombarded with penetrating, cell changing electrons, I want to make sure that they target the correct spots. That is all effect areas are captured effectively and un effected areas are identified for protection. The way they feel my hand and say "yeah, there is some hardening there" seemed not procedural and methodological. I wonder what the methodology and prescribed procedure is int the identification is . It seems very subjective to me!

Any thoughts?

I will update next week.

Coogeematt.

Thanks for the detailed information and the extensive research you are doing to try and understand your DD future. Please keep us inthe loop as to to how things develop. From personal experience there is very lttle significant DD in my extended family. But i have stage 4 LD in both feet and stage 1 DD in both hands. I also have not been exposed to the groups that seem to predispose themselves to this condition.......ie.......smoking, alchohol......diabetes...thyroid dysfunction.....etc.....so i am not sure if you will get a clear idea of the future......from what you describe my feeling is that your situation is thankfully likely to be on the milder side of the DD spectrum....

I think in general most knowledgeable practitioners use palpating to diagnose DD and I can understand how you feel about it feeling subjective. Some also use MRI to confirm there diagnosis. But I must say that it makes a change for practitioners to be up to speed with Options other than surgery. It seems to me to have been pretty sound advice your practitioners have given.....

Wishing you all the best Gazza

juliebeesley:

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Dr Jackson told me my condition was too early to use RT, which is counter to what I've heard about the earlier the better.

Since yesterday I have found little more about my family history. So I continue with my research by attempting for a second opinion. I know I have DD but I want others opinions on when or if it at all I should receive RT or possibly other type of treatment.
I contacted a hand unit at a major Sydney hospital. I discovered that they don't recommend RT. They "wait and see" and then recommend other treatment if progression continues. (In fact the staff member I spoke to had never heard of RT for DD).
Then I contacted a hand surgeon/plastic surgeon. The staff at his practice had also never heard of RT and said their patients are never sent for RT.
Then I contacted the office of the hand surgeon in Sydney who is considered the number one DD expert in Sydney. Again his practice does not use RT. Again the staff member I spoke to had never heard of it. They use NA for early stages and are about to introduce a new injectable drug.
So I then tried to get information from the Royal Australian and NZ College of Radiologist and Radiation Oncology division of the College. When I asked I was looking to clarify some things around the use of RT in the treatment of DD, I was asked what kind of cancer DD was. They had never heard of treating such a disease with RT!

So what was going on! Did I just happen to initially see the only hand surgeon in Sydney or Australia that recommends RT for early stage DD and who informed me of the availability of RT and provided me with the research on its effectiveness (something I had easily discovered even before my appointment). And then he has directed me to the only oncology radiologist in Australia who treats DD. (In the hospital his practice is in and next to the university he teaches at)
So am I lucky that I found a hand surgeon and a hospital that is up to date with the latest info.

Or is RT really not an option. That's why no other hand surgeons recommend it or at least tell patients of its availability! Is RT for DD, even after 15 years of trials still considered to be in its infancy? If I go with RT now (or in 6 mths or a year in progresses) will I be a guinea pig. Will I just be someone being captured to be part of a study goup?
Maybe that's right. That's how these medical improvements go. It's personal and you have to take on the available data and make a choice. With the possibility it will benefit you or not and either way will benefit the wider community.
But why don't other Hand Surgeons not even inform patients in early stage DD of the existence of the long term use of RT in Europe (and other places). And now, in at least one hospital, in Australia. Why hasn't RT for DD taken off in Australai.
Is there still a stigma around the use of RT in Australia. Even though the long term risks linked to RT are very low there is an inflated fear around the dangers of RT. Am I right here?
Or do some hand surgeons don't recommend RT as then they would loose a patient to a treatment they can't provide and then loose a future patient as the treatment may stop or slow the progression of the disease. I'm just putting it out there for comment.

This morning I have an appointment with a local hand therapist (physiotherapist). Then I will make an appointment with a hand surgeon who doesn't inform patients of the availability of RT and ask why and ask what alternatives I have. (Surely they know of RT. I myself have watched youtube clips of all the speakers at the 2010 DD Symposium in Florida. So if I found out surely the professionals out there must know. Surely they read stuff on this site. Maybe they are reading my blog right now. If so, please respond and identify yourself as a hand surgeon.)

Hi Coogeematt,

There is a Dr. Who does RT In Sydney but can't remember his name. I had RT with Professor Martin Borg in Adelaide and if you contact him via email he would be able to tell you who does it in Sydney. Just google him and you will get his address. Good luck.