Proton or photon radiation for meningioma

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

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.

This was very helpful. Thanks for the video!

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.

The doctors made a mask from shoulder to top of head where they could target my cancer. Not just the tumor but a bleeder they had to go back and fix. Didn't loose all that mmuch hair . I have to start exercising slowly again, had a few seizures of late, imagine none for 11 months and then 10 in 4 days. The brain can do wonders, you need the willpower to fight till you win. Im started this week over again like the 5th time. Learned to dream about my brain rerouting what's needed. Sounds crazy but there are part's in the brain never used. Good diet, exercise when you can and positive attitude. With someone else who can pass it on to you

Thanks for posting the video. Dr. Sisti was reassuring. I’m starting adjunctive IMRT for a GTR atypical meningioma mid July. How are you feeling after being nearly halfway through the treatments?

Good luck to you. Where was your tumor located? How long ago did you have the surgery? Do you feel
like you are all recovered from the surgery?

How am I feeling? I think the best answer I can give you is "more tired."

laughing.....I am trying not to attribute every little thing that happens to the radiation......
but sometimes it is hard to know .......itchy scalp for example....but that could be from post-chemo hair growth or hot humid weather......I did switch to "baby shampoo" as recommended by a nurse who did "patient education"

I do/did see blue flashing lights during the treatment itself. Neuro ophthalmologist warned me about that.

I also smell a very strange smell (first time thought hair was being singed) during the treatment.

Otherwise, I would say, so far so good and fingers crossed.

My meningioma is on my optic nerve sheath and I was told to expect total vision loss in that eye. I am holding on to some irrational hope that won't happen.
Have you done any reading or had a "patient education" session? I understand that side effects can be
short, medium and long term. Sorry for going on a bit.....I wish you the best. I liked what Randy Shields wrote above about diet, exercise and good attitude. I found I felt best when outside doing yard work. A good distraction and nature is good for you in my opinion.

I’m glad you’re doing ok so far. Hopefully no vision loss will occur. My tumor was a large 6 cm+ located in the right frontal lobe. Because of the size and location I was opened up from ear to ear at the hairline leaving an 11” scar which itches a lot. That is the only effect of the surgery that I notice. It’s been 5 months since the surgery and I’ve been exercising like a fiend to be as strong as possible going into the treatments. The patient education is supposed to happen at the setup appointment. I had a second opinion where I got a packet of information on what to expect so I’m somewhat informed. But everyone responds differently so we’ll see what happens. Fatigue does seem to be the most common side effect. All the best.

Same area, right frontal lobe. Cancerous. 9 in scar then a bleeder so they went back.two weeks later Did a good enough job for scars had a good doctor and support group. Eat healthy, positive attitude as much as you can and heal up.

Need to ask me anything. Im game and will try to help you