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Proton or photon radiation for meningioma

Posted by subee @subee, 1 day ago

Please share experience with proton or photon radiation.
I had type 2 right parietal meningioma. Surgery was successful but a small bit of tumor left along sagittal vein has grown a very small amount. I need to make a decision on type of radiation. I’d be very grateful to hear people’s experiences with radiation. What type & why? After effects? Fatigue? Hair loss? What else do I need to know?
Thank you

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jasonl1012 | @jasonl1012 | 1 day ago

I would like to hear people’s experiences and reasons why on proton vs gamma knife vs photon as well.

REPLY
santaflavia | @santaflavia | 21 hours ago

hello,
I am currently undergoing IMRT for a benign optic nerve sheath meningioma.
I do not pretend to have ANY expertise, but, I can tell you that I thought that I was going to be offered PROTON and was worrying over making a decision as to where to get treatment based on that, but I was wrong. Both radiation oncologists, two different institutions and both recommended IMRT.

But each case is different.

However, lots of caveats.....I have a small tumor in a very difficult location.....

I would recommend watching this video, which I watched a while back, as this doctor explains a lot in a very clear manner......it's about a half hour long and he is very easy to listen to in my opinion.....five years old, but I think what he says probably still has value....if you watch it, let me know what you think....

https://www.youtube.com/watch?v=44ei2vMBFTE Dr. Michael B. Sisti

near the end, he makes some comments about how each doctor has their own ideas.....I cannot quote him, but it made sense at the time.....I wish you luck. I have had eleven sessions out of twenty-eight so far. Take care.

REPLY
1 reply
jasonl1012 | @jasonl1012 | 2 hours ago
In reply to @santaflavia "hello, I am currently undergoing IMRT for a benign optic nerve sheath meningioma. I do not..." + (show)
@santaflavia

hello,
I am currently undergoing IMRT for a benign optic nerve sheath meningioma.
I do not pretend to have ANY expertise, but, I can tell you that I thought that I was going to be offered PROTON and was worrying over making a decision as to where to get treatment based on that, but I was wrong. Both radiation oncologists, two different institutions and both recommended IMRT.

But each case is different.

However, lots of caveats.....I have a small tumor in a very difficult location.....

I would recommend watching this video, which I watched a while back, as this doctor explains a lot in a very clear manner......it's about a half hour long and he is very easy to listen to in my opinion.....five years old, but I think what he says probably still has value....if you watch it, let me know what you think....

https://www.youtube.com/watch?v=44ei2vMBFTE Dr. Michael B. Sisti

near the end, he makes some comments about how each doctor has their own ideas.....I cannot quote him, but it made sense at the time.....I wish you luck. I have had eleven sessions out of twenty-eight so far. Take care.

Jump to this post

This was very helpful. Thanks for the video!

REPLY
santaflavia | @santaflavia | 39 minutes ago

thanks! I just re-watched it with my husband. Smiling a little b/c I sometimes "second guess" the decision I made
to have my treatment locally rather than at Mayo and the doctor's words about how we make decisions every day with imperfect information was somewhat comforting. I like his style of communication........I may keep him in mind for a consultation if my meningioma grows back some day.

REPLY
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