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An Australian. Dupuytren's begins.
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07/28/2014 00:05
Coogeematt 
07/28/2014 00:05
Coogeematt 
An Australian. Dupuytren's begins.

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.

07/28/2014 00:19
juliebeesley 
07/28/2014 00:19
juliebeesley 
Re: An Australian. Dupuytren's begins.

Hi Matt,

I'm a sufferer from Sydney also. Have you been in contact with RT specialist Dr Michael Jackson from POW:
http://www.canrefer.org.au/Specialist/Details/4900

And Dr Dilley from Burwood specialises in NA.

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.

I agree there are so many differing opinions!

I have consulted with 4 doctors. One suggested surgery (although he was a plastic surgeon and didn't know much about Dups). 2 hand surgeons said do nothing, and the RT surgeon said to wait and see also.


I'd like to follow your progress if that's OK as I'm too scared to do anything (although I only have one nodule so far).

Cheers
Julie

07/28/2014 06:13
GaryBall 
07/28/2014 06:13
GaryBall 
Re: An Australian. Dupuytren's begins.

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

07/28/2014 07:46
Lanod 
07/28/2014 07:46
Lanod 
Re: An Australian. Dupuytren's begins.

Coogeematt, you could email a query to Prof. Seegenschmiedt along with a photo of your palm. He is responsive and helpful.

07/28/2014 12:24
spanishbuddha 

Administrator

07/28/2014 12:24
spanishbuddha 

Administrator

Re: An Australian. Dupuytren's begins.

juliebeesley:

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.

It's not a question or requirement of being early. The condition needs to be active, a stage of creating collagen or proliferation. Usually, of course over possibly many years this is early when first discovered, but since it is also cyclical it could be many years down the line after it has quiesced for some time and reawakened.

07/28/2014 13:29
wach 

Administrator

07/28/2014 13:29
wach 

Administrator

Re: An Australian. Dupuytren's begins.

I fully agree with spanishbuddha: Irradiating a Dupuytren nodule that is stable doesn't make sense because the disease is already dormant. RT slows down disease progression but if the disease is already stable there is no benefit to be expected from RT.

Irrespective of this, the earlier you get RT the better are the chances that it is effective ("Radiotherapy - when to apply best?" http://www.dupuytren-online.info/radiation_therapy.html). Therefore being early seems to be important. Unfortunately it is impossible to predict how Dupuytren's will develop. If it is fresh and active one might conclude that it ought to be irradiated. But half a year later it may turn dormant for many years. Then RT would not have useless. On an average RT is a good means to slow down disease progression. Whether it is advisable for a specific patient with a specific condition is much more difficult, if not impossible, to predict. That's a pity but that's the way it is.

In any case, there is no need to panic that you are about to miss a treatment window for RT. RT is very effective in the first year and still pretty good in the second year after the first appearance of nodules.

Wolfgang

spanishbuddha:
It's not a question or requirement of being early. The condition needs to be active, a stage of creating collagen or proliferation. Usually, of course over possibly many years this is early when first discovered, but since it is also cyclical it could be many years down the line after it has quiesced for some time and reawakened.

07/28/2014 20:49
Coogeematt 
07/28/2014 20:49
Coogeematt 
Re: An Australian. Dupuytren's begins.

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.)

07/29/2014 00:25
GaryBall 
07/29/2014 00:25
GaryBall 
Re: An Australian. Dupuytren's begins.

The answers you seek Matt are throughout this site. many many patients have had the same experience regarding hand surgeons and lack of knowledge on RT .....this is the case globally!!....despite this, RT has been conducted in NZ and I believe in Aus.....but nowhere near the levels of Germany....
If you want the cutting edge advice on RT you can save yourself a lot of heart ache and work and contact Prof Seegenschmeidt in Hamburg. His details are on the treatment drop down bar....

Edited 07/29/14 05:16

07/29/2014 04:39
Vonmae 
07/29/2014 04:39
Vonmae 
Re: An Australian. Dupuytren's begins.

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.

07/29/2014 21:30
Coogeematt 
07/29/2014 21:30
Coogeematt 
Re: An Australian. Dupuytren's begins.

Yesterday I consulted with a Hand Therapist (Physiotherapist). I didn't tell her I had had any diagnosis of the lump in my hand. She looked and felt said it is likely a gangly (whatever that is). Then keeled feeling and said it is possibly DD she admitted that it is very hard to determine. She never asked me about family history of DD, which I have. I explained that the Hand Surgeon had already diagnosed as DD. She said go with that. I told her that he could feel the start of it in my other hand., She agreed with me that there seemed to be nothing in the right hand and could feel no hardening. We compared to her healthy hand and no apparent difference. As a hand therapist she said there is nothing she could do for me. There is no massage or exercise that would help. When I asked her opinion of having early stage RT she said as far as she knew it was only an option for post operative DD. She didn't know it was been used for early stage.

This highlights the lack of communication in the professional world of practitioners that deal with people who present with DD. It also highlights some subjectivity that comes in during the examination procedure. There is no standardisation with questions to ask, how to feel, comparison charts, how to measure. This of course could be resulting in incorrect diagnosis, advice and treatment.. Just a thought.

I have also had word back from my French uncle. He is 86. He said that he can only remember his father (my grandfather) having DD. Not that he knew what it was. He said he has the condition (he didn't know what it was until I emailed him). He can't remember when he first noticed it (his mental capacities have diminished with age). He says the condition hasn't changed and possibly diminished over time. He has had no treatment. I will clarify some detail with him if I can.

This is all helping me to decide on wether to go straight to RT or start an active wait and see regime. Now I know it's not aggressive in my 86 yo uncle and that none of my 6 elder siblings have no aggressive condition I will wait and see. I have made an appointment with Radiation Oncology dept here in Sydney where the Prof of radiology and a hand therapist work together in advising and treating DD with RT. That will add me to their study group and monitor the development of my DD over the coming months/years.

I am coming to the opinion of not being too hasty in the early stages. That RT can possibly be effective even later in the early stages. And possibly the right time to go for RT treatment is if I notice an accelerated or aggressive development. And knowing ones family history helps.

I still plan to another Hand Surgeon that don't recommend RT to get the alternate view.

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contracture   spanishbuddha   Jackson   Coogeematt   Radiotherapy-Literature   nodules   Australian   Dupuytren   condition   effective   appointment   treatment   disease   surgeon   progression   diagnosis   therapist   possible   radiologist   hardening