Pleomorphic Xanthoastrocytoma (PXA) Grade 3 – looking for shared experiences (TERT+, MGMT unmethylated)
Hi,
My younger brother (27 years old) suffered a brain hemorrhage in December 2025. In early March this year, we were told that the hemorrhage was caused by a brain tumor located in the left frontal lobe.
He had surgery four weeks ago, and the surgeons were able to remove what they believe is the entire tumor. Last Thursday, we received the pathology results, and it turned out to be a Pleomorphic Xanthoastrocytoma (PXA), grade 3.
These past few months have been the hardest our family has ever gone through. My brother is incredibly strong, but of course he’s worried about what this diagnosis means for his future. He is scheduled to begin radiation therapy next week.
I’m reaching out here in the hope of connecting with anyone who has experience with this type of tumor—either personally or through a loved one. I understand that PXA is very rare, which makes it difficult to find others who truly understand what he’s going through.
As his big sister, I love and admire him more than anything, and all I want is for him to be okay. I know it would mean a lot to him to talk to someone who has been in a similar situation or who truly understands.
For additional context, his tumor also has a TERT promoter mutation and is MGMT unmethylated. If you or someone you know has had a similar profile, it would mean so much to hear from you.
Thank you for reading ❤️