Author Topic: Proton Therapy - Your experience, thoughts.....  (Read 1940 times)


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Proton Therapy - Your experience, thoughts.....
« on: February 05, 2013, 08:40:49 pm »
Hi All  :)
I was recently diagnosed with a 22 mm by 11 mm vistibular schwannoma, pressing on the brain stem.  I am researching types of that is particularly appealing is "Proton Therapy" as it is non-invasive and supposed to cause minimal damage to surrounding reaching out to see what others have to say and what thier experiences have been.

The main concern I have is that the research I've done so far indicates there may be swelling as long as 18 months or possibly longer after treatment...YIKES, swelling/brainstem...

Appreciate your feedback and you ALL are in my thoughts & prayers...



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Re: Proton Therapy - Your experience, thoughts.....
« Reply #1 on: February 06, 2013, 04:02:25 pm »
Read my Proton Journal under radiation. PM me if you like, I am available most anytime. The bottom line is I would do this again if I had too.
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12


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Re: Proton Therapy - Your experience, thoughts.....
« Reply #2 on: February 07, 2013, 03:10:53 am »
I too liked the Proton Therapy and was really hoping it would be an answer for me.  Unfortunately, I was told that my AN is too large  to just treat with Proton.  I have to have surgery.  It would have been my choice.  Skip was very helpful sharing his information with me!  I think this option should be considered and might be/should be used more often in the future.  Good luck to you!
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan