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Meningioma: Getting ready for radiation, any tips or advice?

Posted by pabw @pabw, Mar 7, 2025

My grade 2 meningioma, "Bengio") was surgically removed April of 2023. At my recent MRI, it showed that it is growing back. Since it isn't too big yet, they want to do radiation to stop it's growth. Anyone else experience this? If so, is there any advice or tips you can give me? I will have travel 2 1/2 hours for treatment. Thanks in advance!

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lawendy | @lawendy | Aug 25 1:42pm
In reply to @vernicek "@lawendy My meningioma is 1.5 x 0.5 x 1.4cm and is located on the left middle..." + (show)
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@lawendy My meningioma is 1.5 x 0.5 x 1.4cm and is located on the left middle cranial fossa along the sphenoid near the optic canal. I don’t have any symptoms. My neurosurgeon at UC Davis in Sacramento did fellowships at UCSF and the Pacific Neuroscience Institute. He has clearly discussed Keyhole surgery to remove the tumor or 30 small doses of radiation. Stronger doses of radiation is not possible because the tumor is too close to the optic nerve. I’m wondering if 5 treatments and 30 treatments are the same total dose.

A friend who works in the medical field, and has a meningioma, consulted with doctors at UCSF and Stanford.
Both recommended Gamma Knife at UCD Medical Center. I had a video visit with a Stanford doctor who studied my MRI and am considering another opinion at UCSF.

I watched meningioma webinars from UCSF, Stanford, and the Pacific Neuroscience Institute all weekend. All led me back to radiation or Keyhole surgery. I will probably choose radiation but am concerned about longterm toxicity.

I am encouraged by your results. Thanks so much for sharing.

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@vernicek gamma was out for me you sound like me I was a student of the meningioma. I listened to TED talks. I did crazy research. It's the best you can do. I'm just terrified of brain surgery. Some people would do it without even thinking about it and it doesn't mean I'll never have to do it. I just have faith that I won't because I trust my doctors and they love to do surgery but they made it clear that whatever they were doing to me with radiation after a couple years if we've got stability, I can breathe a little easier but things happen. My radio oncologist did a residency at UCSF. They are fantastic Stanford's fantastic. You're getting great advice. I was on the Ibeam accelerator fractional SRS boom so grateful you don't have symptoms. I was so grateful I didn't have symptoms if I had symptoms I would have a different choice. My radiation oncologist is Stephen Shaio another name in the mix. He is at Cedars in Los Angeles my neuro surgeon Dr Raymond Chu Cedars.

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ladytri | @ladytri | Sep 30 9:23pm

Is there any type of ride service you help? That's seems like a lot of driving

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