Another Aussie joining in the forum. I am a 53 male, an avid golfer for >40 years, and newly diagnosed with DD. Having said this, I have been aware of a nodule and chords forming very slowly on my left hand for some years now (probably as much as 10 years), I use to think it resulted from all the golf I was playing! But only recently has this nodule begun to disrupt my day to day activities. I estimate that I am now in Stage 1 (ie >6 degrees) on my left hand, with the other rapidly catching up. It has certainly got a gallop on in recent months. In particular, I am now finding it difficult to continue playing golf. It is not just the discomfort of feeling as though I have a large pebble stuck permanently in my golf glove as I grip the club, the pain too as I strike the ball has become much more intense in recent months. But enough of golf. I have read this forum with interest in recent days, particularly as I have only just been referred to a Surgeon last Friday. Of particular interest is the discussion around the use of radiation therapy as an alternative to surgery. I am however not too confident of finding a solution given that I live in Newcastle (ie as opposed to a Capital City), though I do understand that we have the best regional radiotherapy/ oncology unit outside the capital cities. From the discussion to date, it would appear others are attempting to pioneer access to radiation therapy in Melbourne and Perth, but access to this therapy is by no means assured. I am definitely not in favour of a surgical procedue if another less invasive technique is availble, but it does concern me that the radiotherapy technique is seemingly unknown in Australia, and hence the practioner would most likely be practicing on me for the first time! At least the surgical removal of DD tissue appears to be a reasonably advanced science in Australia, even in relative backwaters such as Newcastle. Still, I remain open minded and will follow the discussion in this forum with keen interest. Is there any Australian specific resources I can consult?... certainly I have found nothing better on the web than this site so far for open and honest discussion on the disease, its progression, and the treatment alternatives.

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Hi Trev,

There are possible side effcts from the traditional surgery. Some of these include nerve damage, muscle damage, infection, etc. My point was that these same side effects are also possible, more or less, from the radiotherapy treatment.

So I am pushing for the radiotherapy rather than waiting to partially lose use of my fingers before invasive traditional hand surgery is used to carve up my nodules.

Hi Rosco,

If you read back to the very first post on the Australian Experience thread you will see that AlanR received radiotherapy in Sydney so I believe Newcastle could be a possibility. Not too far to drive down to Sydney if necessary either. From what I have read and found by experience, in general, I know more than the medical professionals on this particular subject. They seem to be able to be persuaded to help if you are persistant and willing to give them a reasonable debate on your chosen treatment option. If at first you don't succeed..........

Tomo

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Hi Tomo

Thanks for reply. I read through AlanR's postings, and he does state that he attempted contact with Hospitals in Sydney. But I think his posting from 04/21/07 seems to suggest that he is undertaking the therapy locally in Perth. I could be wrong though (I hope I am...Sydney is a lot closer!). How do I contact AlanR to confirm? If I answer one of his earlier postings, is it likely to notify his email address? I agree with your view around being persistent with the medical profession.

Rosco

Booked my visit to a local surgeon for early July (same surgeon who successfully operated on my two shoulder impingements in recent years, so I have some faith in him). This leaves me with approximately one month to research viable alternatives, else I am most like committed to a surgical approach. I still favour radio therapy, but not sure I can devote the time to locating (or educating?) a readily accessible clinic.

I have read several articles from the DS website in regard to the various approaches to surgery possible which vary from complete removal of the nodules and chords through to just removing the nodule or just cutting the chords. The recurrence rate seems to be the major factor in choosing any of these approaches, but that too is subject to many factors (from the initial location of the nodule through to several genetic factors). Is there any particular surgical approach more favoured?

Seems the more I read, the more I concerned about getting about a successful LONGTERM outcome from any therapy.

The fractions are actually quite low: usually 3 Gray per treatment and a total of 7 - 10 treatments.

if he is interested in treating other coditions beside cancer he might get in tough with Seegenschmiedt in Essen. Seegenschmiedt is active in many fields besides Dupuytren and Ledderhose.

Wolfgang

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.... The main point that he raised was that he was concerned with the "high fractions" quoted in that article. I guess that means the dosage or amount of radiation used in the treatments. We agreed that he would have a think about my dosage and do some more research. ....

An interesting comment he made was that he is in fact quite interested in using radiotherapy for treating other conditions beside cancer. ...

Tomo

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Hi all,
Just back from 3 weeks in Phuket so didnt have much time for the forum, im sure you all understand. Just to clarify a few points of confusion. I did receive my treatment in Perth (Subiaco Oncology), the mention of Sydney was in relation to the frantic letters to Hospitals and Universities in all states initially, in search of a treatment and information.
I completed my second set of five treatments to both hands on Friday the 1st of June. I saw my specialist prior to the final treatment and he was impressed with my progress (or lack of the DP's progress, kicked its arse!), unlike the earlier visit where he commented that it was all perhaps wishfull thinking.
The treatment went well with just a little redness and dry skin which was easily treated with Dermaveen moisturising cream which sorted it out in no time. My hands although still a little tight are now as good as they have been with reduced nodules and cords and all of the dry skin gone. If my hands stay as they are now then i will be more than happy as they are completely user friendly and functional but only time will tell.
My Doctor wishes to see me at some stage to monitor the progress and improvement as this is the first treatment for the state and 'machine time' is precious so an understandable success level must be ascertained.
All looks good so far and i would urge other Dupes sufferers around the various states to push on with the treatment and maybe the doctors or specialists could contact each other and share their knowledge gained?
Have a good one everybody, back to work tomorrow (wish i was still in Phuket).
Cheers,
alanr.