← Return to Grade 2 Meningioma Diagnosis: Looking for a place to share my worries

Discussion
Comment receiving replies
Profile picture for mgw2025 @mgw2025

Did you have NGS (next generation sequencing) performed--the genetic tests of the meningioma itself? A study published in 2022 (Neuro-Oncology 24 (5) ) reclassifies patients based solely on chromosomal deletions. The WHO reclassified people based on 3 specific genetic mutations about 2 years ago.
I find myself with a WHO grade 1 but 5 chromosomal "deletions" on NGS. The Cleveland Clinic group where I had craniotomy, removal of bone where the tumor started, removal of affected dura and a postop neg MRI and PET, has still recommended radiation because of the NGS results.
There is no research on the effects of radiation for people in my situation, and the Clinic has been advising radiation in this situation for only a year. While the numbers in the study are very small, the writers go on record stating that radiation did not appear to modify risk of recurrence for anyone with an 'upgrade" to their WHO grade. Not all of these people, even upgraded to Grade 3 (as I was, tho Grade 2 per the radiation oncologist) had a recurrence during the study time--this says to me that we are not a homogenous group.
I am betting you were a grade 2, gross total resection and would have had a negative PET scan if you had had one performed.
I have elected to have close followup but no radiation.

Jump to this post


Replies to "Did you have NGS (next generation sequencing) performed--the genetic tests of the meningioma itself? A study..."

You’re right. There’s been a number of advances in this field in the almost 9 years since I had the surgery (an emergency, the meningioma bled, a stroke). I recovered, but for months I could only understand the big picture. If they did genetic sequencing and told me the results, I might not have remembered because it might not have seemed important.

For months afterwards, I was so fuzzy that my son had to walk me from the physical therapy facility, put me in the Uber, and trust the driver to get me home while my son went to work.