| Advice sought from other people who have had RT in Germany |
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08/23/2014 04:31
MikeNinerSeven 
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08/23/2014 04:31
MikeNinerSeven
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Advice sought from other people who have had RT in Germany
Hi all,
I am seeking advice from people who have had RT in Germany. I have had one round of RT in Germany, I am from Canada and now I have a choice. I can have RT locally on the west coast of Canada or I can head back to Germany. So, Prof S would only do my hands this summer even though I have Ledderhose (LD) in both feet. I only have one contraction on my left hand on one finger, about 12 degrees. DD was originally active in my left hand about 8 years ago. This last February it became active in my left and right hand and also in my left foot. Prof S also found the beginnings of LD in my right foot.
Since having RT I do feel it is still active. My contraction is not worse and is sometimes better. I can do "table top" at times and not at others.
So, what would others suggest. Is there a benefit to going back to Germany for round 2 of RT? Has Prof S ever looked at someone for round two and said I will now do your feet? (My feet are not worse and I do not have much if any pain right now. I can see that some toes have a very slight contraction and I do have several bumps on the inside of my left arch.)
There are some other considerations, money not being one of them. The local person said they would contact Prof S for guidance and would use the same cut-out on the lead shield. They did say "bolus?" which made me a little nervous however I can check that they have gotten the correct information from Prof S. The machine here is 6 units of power and electron as opposed to 4 units of power in Germany, also electron. I would assume this just means a shorter exposure.
Are there any other considerations I should think about?
Thanks in advance for your advice and sharing your experiences.
Cheers,
Mike
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08/23/2014 07:00
spanishbuddha  Administrator
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08/23/2014 07:00
spanishbuddha Administrator
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Re: Advice sought from other people who have had RT in Germany
Hi Mike
I would have thought it is always your decision whether to have RT or not. On my last visit to ProfS he advised RT for the THIRD (one series) time on a small area on my RH which had been treated two years earlier. I turned this down.
Local treatment following the protocol should be fine for the second series. Don't confuse current treatment with new consultation and diagnosis. Return to Germany because you want the second treatment there, or a further consultation for the hands or feet.
ProfS uses a bolus with the treatment, that small gel filled bag they lay on top of your hand before final positioning of the beam.
SB
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08/23/2014 08:14
cilla 
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08/23/2014 08:14
cilla
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Re: Advice sought from other people who have had RT in Germany
I have had radiotherapy in England, and had a metal plate to fix a hand in position.
I think I would have been happier to have had a bolus-
- now that I have looked up what a bolus is, and how it fills in the indentations of one's body.
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08/23/2014 11:47
newman 
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08/23/2014 11:47
newman
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Re: Advice sought from other people who have had RT in Germany
Hi Mike I had RT under Prof. Seegenschmiedt then in Essen using an older Orthovoltage 120kv Xray machine. When I visited him for the treatment of Dupuytrens he inspected my feet and carried out Rt treatment for Ledderhose at the same time. We spoke about electrons and protons (3- 10 mev) He told me it makes no difference . In his new private practice in Hamburg they have the latest " Cyberknife " machine. By selecting treatment-Radiotherapy-Overview & Literature you can contact Wolfgang Wach moderater of the forum, for a pdf of the procedure to carry out the RT.
Edited 08/23/14 14:59
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08/23/2014 15:41
MikeNinerSeven
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08/23/2014 15:41
MikeNinerSeven
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Re: Advice sought from other people who have had RT in Germany
Thanks Newman! Knowing about the PDF I can forward it to my west coast doctor. More information is good.
Cheers,
Mike
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08/23/2014 15:47
MikeNinerSeven
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08/23/2014 15:47
MikeNinerSeven
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Re: Advice sought from other people who have had RT in Germany
Hi SB,
Thanks for responding. You spend a lot of time helping people out here. Know that it is appreciated.
Quote:
I would have thought it is always your decision whether to have RT or not. On my last visit to ProfS he advised RT for the THIRD (one series) time on a small area on my RH which had been treated two years earlier. I turned this down.
Prof S would not do RT on the feet as there is no loss of functionality here. Once there is loss then yes he would do RT. I suspect that his decision is based on looking at my case in whole and not just the parts. If I change some lifestyle things then I think his reasoning is that my LD will not progress and I will not need RT, at least for a very long time.
Quote:
Local treatment following the protocol should be fine for the second series. Don't confuse current treatment with new consultation and diagnosis. Return to Germany because you want the second treatment there, or a further consultation for the hands or feet. This is my initial thought as well. I just want some second opnions and to hear others experiences. (Hopefully they will have a bolus and use it correctly. :) )
Quote:
ProfS uses a bolus with the treatment, that small gel filled bag they lay on top of your hand before final positioning of the beam. Yup. I had one used for my treatment as well.
Thanks SB!
Cheers,
Mike
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