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Radiation Therapy In The UK.....Advise Needed Please
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07/01/2013 11:58
Simondo 
07/01/2013 11:58
Simondo 
Radiation Therapy In The UK.....Advise Needed Please

Hi everybody, i am new to this forum and would like some information and advice on radiation therapy in the uk.
I recently had surgery (11 weeks ago) on my palm and pinky finger for my dupuytrens contracture. After 11 weeks of pain,swelling,stiffness and other strange sensations i have now found 2 new nodules on my palm effecting thumb and index finger. I went to see my consultant again today to inform him of the new developments and he immediately reacted in a very defensive way,stating at least 5 times that this had nothing to do with the surgery and that the duputrens would have come back at those sites anyway. I think i know this is not true as surgery/trauma to the hand can cause the dupuytrens to manifest itself in different parts of the hand.He then told me he could not do anything about it until the finger and thumb started to contract and then he would consider surgery again.I questioned him on these points and he virtually told me that he was the consultant and he knew best and that he dident need to see me again.I had serious doubts about surgery beforehand and now wish i had listened to myself before taking the surgery option.
I have read many first hand reports about radiation therapy, mainly from patients who travelled to Germany, and i am very interested in taking this option further.Can anybody recommend anywhere in the uk where radiation therapy is available for dupuytrens and one that uses the same protocols as the specialists in Germany? I am very worried about using anybody in the uk because of the lack of knowledge and expertise in this field. I live in the north of England (leeds) and would be very grateful for any advice or information.
Simon :-)

07/01/2013 14:32
BRIANB 
07/01/2013 14:32
BRIANB 
Doctor Eaton

I have read and contributed and shared my experiences regarding Dups .. treatment ... causes ... and preventative measures.

The best option for all current and future suffers of this disease is for Doctor Charles Eaton to be persuaded to return to practice .

This is just my opinion ..

Good Luck to all !

07/01/2013 19:57
spanishbuddha 

Administrator

07/01/2013 19:57
spanishbuddha 

Administrator

Re: Radiation Therapy In The UK.....Advise Needed Please

Simondo:
Hi everybody, i am new to this forum and would like some information and advice on radiation therapy in the uk.
I recently had surgery (11 weeks ago) on my palm and pinky finger for my dupuytrens contracture. After 11 weeks of pain,swelling,stiffness and other strange sensations i have now found 2 new nodules on my palm effecting thumb and index finger. I went to see my consultant again today to inform him of the new developments and he immediately reacted in a very defensive way,stating at least 5 times that this had nothing to do with the surgery and that the duputrens would have come back at those sites anyway. I think i know this is not true as surgery/trauma to the hand can cause the dupuytrens to manifest itself in different parts of the hand.He then told me he could not do anything about it until the finger and thumb started to contract and then he would consider surgery again.I questioned him on these points and he virtually told me that he was the consultant and he knew best and that he dident need to see me again.I had serious doubts about surgery beforehand and now wish i had listened to myself before taking the surgery option.
I have read many first hand reports about radiation therapy, mainly from patients who travelled to Germany, and i am very interested in taking this option further.Can anybody recommend anywhere in the uk where radiation therapy is available for dupuytrens and one that uses the same protocols as the specialists in Germany? I am very worried about using anybody in the uk because of the lack of knowledge and expertise in this field. I live in the north of England (leeds) and would be very grateful for any advice or information.
Simon :-)
There are very few hospitals providing RT on the NHS in the UK, even though there is NICE guidance for it. Manchester, East Anglia and Exeter come to mind, but this was when PCT's existed and before the new CCG's. You need to follow protocol and get referred by your GP, but need also a radiologist with the training and knowledge, and free time of equipment.

Easier is to consult with Dr Glees or Schaffer privately, and pay for treatment http://www.dupuytrens-society.org/treatm...rs_clinics.html.

08/01/2013 20:10
pixi 
08/01/2013 20:10
pixi 
Re: Radiation Therapy In The UK.....Advise Needed Please

Simon, I saw Dr Goode in Poole (while I loved in London) five years ago through the NHS. Check out this thread:

http://www.dupuytren-online.info/Forum_E...on-0_292_1.html

You didn't say how old you are. At that time I was 33 years old, and Dr Goode wanted to watch and wait. Two years ago I went to another radiation specialist here in NY, and he didn't want to move forward either because of my age (and desire to have children.)

Dr Goode might not be consulting anymore, though it looks like more specialists have been added to the UK roster:

http://www.dupuytren-online.info/radiotherapy_clinics.html

Good luck!

08/04/2013 17:47
bstenman 
08/04/2013 17:47
bstenman 
Re: Radiation Therapy In The UK.....Advise Needed Please

I live in California on the west coast of the USA and in 2007 I flew to Germany and took the train to Essen and was treated by Dr. Seegenshmiedt. The travel cost would have been far less if I was living in the UK. I paid 400 Euros to have both hands treated as a US citizen. As a German citizen the treatment would have been free.

Dr. Seegenschmiedt has published his treatment protocols (available on the internet) and a willing doctor in the UK can follow them to radiate your hands. Not all XRT treatment operates in the same manner and there may need to be some adjustment and possible an MRI to calibrate the equipment so only the tissue directly under the skin and not the bones are exposed to the focused X-rays.

If were me I would make the trip to Essen and combine my XRT with sightseening in the country. My hands were more sensitive to UV from sunlight but that is easily dealt with by wearing a light glove or gloves.

Radiation is less effective the more the disease has progressed so I encourage you to go sooner rather than later. In my own case my family physician was incompetent and it delayed my treatment. One hand was treated successfully with the XRT and the one that had progressed further at that time has required subsequent multiple Xiaflex treatments.

08/06/2013 01:02
moondanc 
08/06/2013 01:02
moondanc 
Re: Radiation Therapy In The UK.....Advise Needed Please

bstenman:
I live in California on the west coast of the USA and in 2007 I flew to Germany and took the train to Essen and was treated by Dr. Seegenshmiedt. The travel cost would have been far less if I was living in the UK. I paid 400 Euros to have both hands treated as a US citizen. As a German citizen the treatment would have been free.



Can you describe exactly how the size of bolus (hard to describe-- the grid made to cover the parts of your hand that weren't irradiated). I had my RT in CA from a radiation oncologist who had been approached by another member of the forum (Diana--I don't think she posts anymore) and asked if he would follow Dr. Seegenschmiedt's regimen. Diana did all the research and presented the protocol to Dr. Change at Palo Alto Medical Foundation and she was his first patient. I was his second. I had my entire palms and fingers up to the space between PIP and DIP. I've since heard from other folks who have had RT that the only portion of their hand that receives treatment is the nodules. I think I remember you posting a while back--after you had RT at UCSF?--that you didn't think American docs were sufficiently educated about RT and didn't treat a large enough surface. My surgeon told me how large an area he though some be treated, my radiation oncologist agreed...

To you, Wach, and others--what's the best source of info on RT? I know the best chance of having RT succeed is when the nodules first appear but I thought that's because that's when it is more active. While it is spreading, isn't it active and when one previously only nodules in the palm but now has them in the fingers--why wouldn't RT be effective.
Living and learning,
Diane

08/06/2013 06:38
spanishbuddha 

Administrator

08/06/2013 06:38
spanishbuddha 

Administrator

Re: Radiation Therapy In The UK.....Advise Needed Please

moondanc:
bstenman:
I live in California on the west coast of the USA and in 2007 I flew to Germany and took the train to Essen and was treated by Dr. Seegenshmiedt. The travel cost would have been far less if I was living in the UK. I paid 400 Euros to have both hands treated as a US citizen. As a German citizen the treatment would have been free.



Can you describe exactly how the size of bolus (hard to describe-- the grid made to cover the parts of your hand that weren't irradiated). I had my RT in CA from a radiation oncologist who had been approached by another member of the forum (Diana--I don't think she posts anymore) and asked if he would follow Dr. Seegenschmiedt's regimen. Diana did all the research and presented the protocol to Dr. Change at Palo Alto Medical Foundation and she was his first patient. I was his second. I had my entire palms and fingers up to the space between PIP and DIP. I've since heard from other folks who have had RT that the only portion of their hand that receives treatment is the nodules. I think I remember you posting a while back--after you had RT at UCSF?--that you didn't think American docs were sufficiently educated about RT and didn't treat a large enough surface. My surgeon told me how large an area he though some be treated, my radiation oncologist agreed...

To you, Wach, and others--what's the best source of info on RT? I know the best chance of having RT succeed is when the nodules first appear but I thought that's because that's when it is more active. While it is spreading, isn't it active and when one previously only nodules in the palm but now has them in the fingers--why wouldn't RT be effective.
Living and learning,
Diane
The lead mask used by ProfS in my case meant that most of my palm was radiated, up to a a curved line that would include the finger PIP joints but not the DIP, and also not the thumb.

The mask is not a bolus. A bolus is a gel filled cushion placed on the hand that the lead mask is then placed on top of. The purpose of the bolus is to inhibit the depth of penetration of the radiation.

Radiation is effective in the proliferation phase(s) of the disease. Not just when nodules first appear, although obviously for many this may be the same. Check out the Miami seminar on YT or read 'the book'.

Edited 08/06/13 15:39

08/06/2013 12:39
spanishbuddha 

Administrator

08/06/2013 12:39
spanishbuddha 

Administrator

Re: Radiation Therapy In The UK.....Advise Needed Please

spanishbuddha:
moondanc:
bstenman:
I live in California on the west coast of the USA and in 2007 I flew to Germany and took the train to Essen and was treated by Dr. Seegenshmiedt. The travel cost would have been far less if I was living in the UK. I paid 400 Euros to have both hands treated as a US citizen. As a German citizen the treatment would have been free.



Can you describe exactly how the size of bolus (hard to describe-- the grid made to cover the parts of your hand that weren't irradiated). I had my RT in CA from a radiation oncologist who had been approached by another member of the forum (Diana--I don't think she posts anymore) and asked if he would follow Dr. Seegenschmiedt's regimen. Diana did all the research and presented the protocol to Dr. Change at Palo Alto Medical Foundation and she was his first patient. I was his second. I had my entire palms and fingers up to the space between PIP and DIP. I've since heard from other folks who have had RT that the only portion of their hand that receives treatment is the nodules. I think I remember you posting a while back--after you had RT at UCSF?--that you didn't think American docs were sufficiently educated about RT and didn't treat a large enough surface. My surgeon told me how large an area he though some be treated, my radiation oncologist agreed...

To you, Wach, and others--what's the best source of info on RT? I know the best chance of having RT succeed is when the nodules first appear but I thought that's because that's when it is more active. While it is spreading, isn't it active and when one previously only nodules in the palm but now has them in the fingers--why wouldn't RT be effective.
Living and learning,
Diane
The lead mask used by ProfS in my case meant that most of my palm was radiated, up to a a curved line that would include the finger PIP joints but not the DIP, and also not the thumb.

The mask is not a bolus. A bolus is a gel filled cushion placed on the hand that the lead mask is then placed on top of. The purpose of the bolus is to reduce the depth of penetration of the radiation.

Radiation is effective in the proliferation phase(s) of the disease. Not just when nodules first appear, although obviously for many this may be the same. Check out the Miami seminar on YT or read 'the book'.

08/06/2013 18:12
moondanc 
08/06/2013 18:12
moondanc 
Re: Radiation Therapy In The UK.....Advise Needed Please

BRIANB:
I have read and contributed and shared my experiences regarding Dups .. treatment ... causes ... and preventative measures.

The best option for all current and future suffers of this disease is for Doctor Charles Eaton to be persuaded to return to practice .

This is just my opinion ..

Good Luck to all !

I, too, think it would be great if Dr. Eaton would return to practice. I used to say I'd walk from CA to FL to be treated by him. He's one of my all-time hero doctors and wonderful human being (along with his wife Valerie). However, it's not going to happen and just be thankful he's doing what he is doing--running the Dupuytren Foundation and trying to find a cure! No one could be more dedicated to conquering DD.

http://dupuytrens.org/
http://dupuytrenfoundation.blogspot.com/

Diane

08/06/2013 18:28
moondanc 
08/06/2013 18:28
moondanc 
Re: Radiation Therapy In The UK.....Advise Needed Please

spanishbuddha:


The lead mask used by ProfS in my case meant that most of my palm was radiated, up to a a curved line that would include the finger PIP joints but not the DIP, and also not the thumb.

The mask is not a bolus. A bolus is a gel filled cushion placed on the hand that the lead mask is then placed on top of. The purpose of the bolus is to reduce the depth of penetration of the radiation.

Radiation is effective in the proliferation phase(s) of the disease. Not just when nodules first appear, although obviously for many this may be the same. Check out the Miami seminar on YT or read 'the book'.


Sorry for the mis-statement about the bolus. I still have a problem with "proliferating" -- as long as I'm getting new nodules-- isn't it still proliferating? Or if it was on only my RH and then all of a sudden I start getting nodules on the left?

I realize it can't "prevent" nodules from forming if they're not yet there but then you say you had your entire palm radiated exactly the same way I did. (Other patients of Dr. S get a circle drawn around the existing nodule and that's all that gets treated.) Did you have nodules in your entire hand? How long have you had DD?

Thanks for info,
Diane

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