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04/13/2007 16:22
bstenman 
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04/13/2007 16:22
bstenman
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Re: Radiotherapy
Richard,
You are radiated by X-rays when you have your dental exam. In fact with the proximity of your teeth to other key organs such as the thyroid and the brain it should be more of a concern.
The risk of cancer is related to the type of x-rays, the part of the body exposed, and the amount of exposure. All these variables need to be taken into account.
As the great majority of people with Dupuytren's are men in their 50's, the risk of not being able to bear children does not come into play. The number of people treated by radiotherapy for Dupuytren's is extremely small and an even smaller number have been involved in medical studies and none for a period of 20 years to determine the real impact of the radiotherapy and cancer risks involved.
If you are a 25 year old female radiotherapy might not be advised. If you are a 60 year old male, cancer at age 80 from which you might die by age 82, worst case, is not a concern at all. And with the 60 year old man this assumes a 100% chance of getting some form of cancer as a result of the radiotherapy. Of course most people will fall somewhere along this spectrum.
Overall ones risk of cancer is more likely to be from environmental factors, including sun exposure and smoking (or being around people who smoke) and pollution, than from exposure to 30 Gy of x-rays on your hand or foot. The x-rays only need to penetrate the skin layer to be effective and so are quite different than radiotherapy treatment to treat cancerous cells deep in the body including the bone marrow.
Your friend who is no longer fertile after the radiation treatment is unfortunate in not being able to have children, but fortunate in that because of the treatment she is still alive and able to adopt children if desired.
Anyone with Dupuytren's needs to decide if the possible risk of cancer in 20 years is worthwhile to delay or prevent the progression of the disease.
In another 10-20 years with more people having received radiotherapy treatments and a long time period for cancers to develop (from all causes)
it will be possible to accurately access the risk, ignoring individual genetic factors that may predispose an individual to cancer, of receiving radiotherapy treatment.
For me it is a quality of life consideration as well. I would prefer 20-25 years without the effects of Dupuytren's and the full use of my hands, to 30 years with repeated surgery and all the side effects of surgery (which can include amputation, by the way, as well as the risk of dying from the anesthesia).
The only risk free course of action is physical therapy. No one really knows the risks involved with nutritional products or other chemicals such as NAC, much less the purity of these supplements, which in the USA at least is not regulated in any manner.
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04/13/2007 20:25
TrevB
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04/13/2007 20:25
TrevB
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Re: Radiotherapy
Quote:
You are absolutely right, only a small area of the hand is exposed, important parts are shielded ... also dosis and energy are significantly lower than in cancer treatment. It is even different equipment that is being used.
Wolfgang
It says in the presentation that only the affected part of the hand should be treated and the rest be shielded by lead. Also that it makes sense to shield the rest of the body. However the guy in slide 13 of the web version is sitting there in trousers, shirt and tie with little apparent protection which does seem strange
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04/13/2007 20:40
TrevB
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04/13/2007 20:40
TrevB
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Re: Radiotherapy
Quote:
For me it is a quality of life consideration as well. I would prefer 20-25 years without the effects of Dupuytren's and the full use of my hands, to 30 years with repeated surgery and all the side effects of surgery (which can include amputation, by the way, as well as the risk of dying from the anesthesia).
I think that's a very good point but when you've seen family members die of cancer then it's still a tough call (even if many years down the line)?
You can hope that your Dups doesn't need treatment? (unlikely)
Repeated NA might work for you?
You might have successful trouble free surgery (seems unlikely)?
Another treatment might appear (unlikely)?
All of these without the unknown risks of Radiotherapy.
Do we know of any doctors with Dups who have gone down this route? I always think that that's a good indicator?
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04/13/2007 22:10
bstenman
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04/13/2007 22:10
bstenman
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Re: Radiotherapy
Dupuytren's affects 3% of the population and does not affect people of Asian or African decent, so the odds of a doctor having Dupuytren's and getting radiotherapy is remote.
My father died of cancer as did two stepfathers. All three were heavy smokers. They had very prolonged and very painful deaths. I believe it is safe to assume they did not get cancer from dental x-rays, and when they were growing up little or no precautions were taken to protect the patient during the process. Needless to say I do not smoke.
There is a very real 19% complication rate for hand surgery and a very real number of people who go to hospitals for minor surgery and die on the operating table from the anesthesia or other side effects. There is a very real risk of infection from a fasciectomy with the skin peeled back. There is a very real risk of permanent nerve and muscle damage from the use of a tourniquet during surgery. This information is based on published medical studies and easily verified by anyone.
Unfortunately the surgeons I know believe that a surgical fix is the best way to go. Cut it out that fixes the problem. As with cancer treatment this has not proven to be an effective approach.
There are over 1 million soldiers from the USA and Great Britain that thanks to their tour of duty in Iraq have been exposed to far more radiation (and have breathed the dust from radioactive ammunition into their lungs) and are a thousand times more likely to die of cancer in the next 10-20 years (and produce offspring with birth defects) than anyone receiving radiotherapy for Dupuytren's from one of the established clinics.
It is important to keep things in perspective in less you are looking for a reason to not to do anything but sit and wait and hope for the best. For some people this may be the best course of "action". For others it may not. It is a personal decision.
For me I need the use of my hands for both professional and recreational pursuits and I am willing to do whatever it necessary to restore them to full function and keep them that way. I look at my investment now in time and money being paid back over the next 30 years.
It is going to cost me about $US 7,000 for the radiotherapy with my treatment, travel and lodging expense but I really don't see a viable alternative in terms of the probable benefit I will receive and the relative risk involved.
Bruce
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04/13/2007 22:18
TrevB
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04/13/2007 22:18
TrevB
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Re: Radiotherapy
Can't argue with that - nicely put
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04/15/2007 06:01
wach  Administrator
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04/15/2007 06:01
wach Administrator
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Shielding with radiotherapy
Hi TrevB, the shielding of the guy on slide 13 of the presentattion (http://www.dupuytren-online.info/ASSH_20...files/frame.htm) might not be obvious but it's there:
- the primary shielding is the (vertical) conus between the hand and radiotherapy equipment. It limits the radiated area to the aperture of the conus.
- the radiated area of the hand is additionally limited with a lead shield masking the not to be radiated area. If you have a close look you can see it between the conus and the hand. It looks like a sheet of paper laying on the hand. It's acutally a lead plate covered with white textile.
- with this set-up some radiation might still pass through the radiated part of the hand. To protect "essentials" the man is additional wearing a lead apron (the silvery sheet on his legs).
Hope this reduces your concerns!
Wolfgang
PS: Yes, you might keep your tie on. But it's not a requirement.
Quote:
It says in the presentation that only the affected part of the hand should be treated and the rest be shielded by lead. Also that it makes sense to shield the rest of the body. However the guy in slide 13 of the web version is sitting there in trousers, shirt and tie with little apparent protection which does seem strange
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04/15/2007 14:47
Jennifer 
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04/15/2007 14:47
Jennifer
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Re: Radiotherapy
This information is so helpful to me, thank you all. I was diagnosed about 5 days ago. I have emailed Essen to find out about going to Germany. Iagree, I don't want to hang around and wait for this disease to go any further. How long did you all have to wait to hear back from Essen. Once you did contact them, do you go quickly or is it a long wait. Did you have to go back for more treatments, or is it usually once and back for a check-up? I am going to England in June and would love to go on to Germany. Any helpful suggustions would be appreciated.
Thank you,
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04/15/2007 20:41
TrevB
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04/15/2007 20:41
TrevB
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Re: Radiotherapy
Quote:
Wolfgang
PS: Yes, you might keep your tie on. But it's not a requirement.
Quote:
Lead ties are in fashion in the UK at the moment so if I can get a passport, have a word with my GP and manage to cope with a trip to Germany before my Dups progresses too far then I would like to keep my tie on
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04/15/2007 23:09
bstenman
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04/15/2007 23:09
bstenman
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Re: Radiotherapy
Jennifer,
With radiotherapy at Essen there are two choices;
7 treatments on Monday, Wednesday, and Friday over a 15 day period (two weekends to include in your stay in Germany). Total exposure is 21 Gy
10 treatments with the first Monday through Friday, and then an interval of 2-3 months for your body to recover from the radiation, and then a second week for the second set of 5 treatments. Total exposure is 30 Gy, higher than the 7 treatment schedule but spaced over a longer time period.
Both are currently considered equally effective. More chance of skin irritation and similar side effects with the 7 day treatment schedule.
Bruce
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04/16/2007 07:08
Nigel 
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04/16/2007 07:08
Nigel
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Re: Radiotherapy
Hi Jennifer
I had the 10 treatments separated over 3 months. I have listed my experiences in this Radiatiation Therapy section of the web site. I would recommend it.
To contact either ring ++49 / 201 / 434-2559 or email Prof Seegenscmidt's secretary at christiane.kerstanX=Xkrupp-krankenhaus, removing the Xs first - they put these to stop web bots from stealing email addresses from web sites and then sending spam.
The reply rate varies - I think they are a very busy department. I would ring if I were you. Prof Seegenschmidt rang me back when I first made contact with the hospital. My German is not brilliant but Christiane's is good and the Prof's brilliant.
The hospital is very clean and modern, and the time-keeping of appointments excellent.
Cheers
Nigel
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