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

Did you receive a pathology report that included a genetic analysis of your tumor tissue. There are specific tumor markers that are significant for the prognosis. For example NF-2 on 22q12 is a common mutation in Type II. There are more and more data available about the outcome with different mutations. Type 2 is not very common and thus still not very much defined. You might want to get more information before any radiation therapy.

I forgot to mention - if your tumor is positive for somatostatin receptors, you could get a PET scan with a specific radiolabeled ligand that binds specific to tumor cells. It can show if you have any residual tumor tissue. It is important to get a baseline in the beginning to see how your tumor behaves. You might not need an aggressive radiation therapy which is important for the long term prospective.

There are many different types of WHO 2 classified meningiomas. Some are more problematic than others, but the remaining dual tail might be concerning. I had a grade 2 meningioma and was referred to a radiation oncologist who after looking at everything, apparently guessed right. In his words, he was “afraid he would do more harm than good”. It’s been 8 years of clean scans for me, knock on wood it continues. You have my encouragement and prayers.

Agree with the comment about doing a dotatate PET scan. I would feel more comfortable with radiation postop IF the PET is positive. and perhaps not if the PET is negative. The statement that affected dura was left behind would also make me feel more inclined toward radiation.

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.

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.

Sorry you had such a tough time. But so glad no recurrence!