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RADIOTHERAPY-TREATMENT .General Understanding.
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07/09/2008 03:01
newman 
07/09/2008 03:01
newman 

RADIOTHERAPY-TREATMENT .General Understanding.

Australia Calling. Hi in the US.( Lisa-Megan-Arogers.)
Through my own experience I'll try and clear the air about RT.I went to Germany and met with Prof. Seegenschmiedt ,as I had had many surgeries including 4 skin grafts. My last operation being in June 07. Within 4 weeks of the surgery I developed lumps in the web of one hand and on the index finger of the other hand. I met with the Prof. who sent me to Dr, Steffens a local hand Surgeon as RT. was mainly used in the early stage of MD.& ML.The prof. had not seen anyone like me before, with so much surgery. Dr.Stefens advised that Surgery was always an option even after RT. It was more complex, but to a good surgeon it would not be a problem. He used minature ultrasound and identified that the disease was active in the arears where the lumps appeared. He reported back to Seegenschmiedt . It was decided to have RT. In Essen the machine used is an Orthovoltage 150 kw Unit ,which is very flexible low dose machine and also used in the treatment of keloids. The other machines used are Electron units 3-5 mev. It doesn't matter.The outcome is the same.
The total dose is important.Also the whole hand is not treated only the affected nodules plus a small margin . The Prof. is trying a side by side trial- one receiving 21 Gy. and the other 30 Gy.in an effort to arrive at a minimum dose rate. Some US studies have used 60 Gy. Prof.Seegenschmiedt has with others written a book" Radiotherapy for Non-Malignant Disorders "(Springer publication) Try to find & read the section of Dupuytrens. Finally my right hand only received 5X3Gy.and the lumps have gone .The left finger received a total 30Gy , 4 weeks ago ,some 6 months after the first treatment. The heat and the funny feeling has gone with the lumps softening. I am hoping for a good result. I'll send each a "Clinical Investigation "which may be of help. Regards Hope this opens the horizon.

07/09/2008 03:49
Lisa 
07/09/2008 03:49
Lisa 
Re: RADIOTHERAPY-TREATMENT .General Understanding.

Thank you SO much for this explanation. It helps tremendously. I had pretty much decided for radiation and then my MD kind of spooked me. You have made me feel so much better about it. Sorry to hear you have had such an ordeal though.

I woke up to a burning sensation and lump in my hand one morning about 4 months ago. I fear my case may be on the aggressive side as I have had several lumps form within the last couple of months, including on the other hand, and am anxious to start treatment.

07/10/2008 03:48
newman 
07/10/2008 03:48
newman 

Re: RADIOTHERAPY-TREATMENT .General Understanding.

Hi Australia Calling.
I would say to those persons looking at Radiotherapy ,that they become well informed and feel comfortable before undergoing any treatment. Read and download a wealth of knowledge from the Dupuytren Society web under" Radiotherapy=Literature." Read the article on Risks of Cancer and also the 2 articles under" Personal Experiences." (open box above forum) Some of the literature may not mean much to the lay person, but to the Oncologist it may be the difference of offering treatment or not . (pdf- Cellular info from University Tubingen and the powerpoint from Prof Seegenschmiedt.) My hand surgeon was against RT. telling me to expect holes in the hand, burning etc. I toldl him that may have been the case back in the 1950's . Things have changed in 60 years. Since the RT. treatment he has seen the results on both my hands and feet & he has been converted that maybe there are other options. Finally any fears I had about RT.disappeared, when I read in Segeenschmiedt's and others book 'Radiotherapy for Non-Malignant Disorders ' that in Germany alone, for the 07 year, over 40,000 patients were treated with RT. for 28 different
benign disorders. Regards from down under.

Edited at 07/10/08 13:11

07/12/2008 04:56
Megan 
07/12/2008 04:56
Megan 
Re: RADIOTHERAPY-TREATMENT .General Understanding.

Hi Barry,

I also wanted to thank you for thinking of us and sending that information. I'm going to try and get the book from the interlibrary loan service (free!). I would like to know as much as I can about this. I'm scheduled for radiation therapy in Boise the third week in September.

I'm sorry, too, that you've been through so much with this...but I'm happy to hear that you are happy with your recent results, and that you and your wife got to see a lot of Germany!

best, best wishes,

Megan

07/12/2008 05:05
Megan 
07/12/2008 05:05
Megan 
Re: RADIOTHERAPY-TREATMENT .General Understanding.

Hi Lisa,

I'm glad you're feeling more at ease with the radiation treatment. I have a quick question for you...are you also taking NAC? I read about it on the forum and am also taking it. I'm covering all my bases!

Since having the steroid injection (3 weeks ago), the lump is almost completely flat - and has shrunk to the point that it's hard to see, but the cord is more apparent and feels more "stringy"...that freaks me out a little but I guess I'll have to get used to it!

Anyway....thinking of you and hoping all the insurance business gets sorted out and that you are able to get the treatment close to home.

(I'm unclear about the terminology...is the person who administers the radiation a radiologist? a radiation oncologist? Is it radiation? radiation therapy? radiotherapy? I guess it depends upon your continent!

Megan

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