Astrocytoma type 3/2 IDH Mutated, MGMT Methylated
Hey everyone,
I’m 25 years old and earlier this year I was diagnosed with an astrocytoma (mostly grade 2 with some very small focal grade 3 areas). It’s IDH-mutant and MGMT methylated. The tumor was located in my frontal lobe, close to the forehead area, and was found very early completely by accident.
The tumor was around 3.5 cm and I underwent surgery where the surgeons achieved a gross total resection (GTR), meaning they removed everything visible on scans and even a bit beyond that according to my doctors.
Right now I haven’t had radiation or chemotherapy yet. My team is monitoring me closely and we’re taking things step by step.
I guess I’m posting because mentally this diagnosis is a rollercoaster. Some days I feel extremely hopeful, especially because it was caught early and the surgery went well. Other days I spiral and think about recurrence statistics and survival numbers for hours.
I would really love to hear from anyone with a similar diagnosis:
- IDH-mutant astrocytoma
- Grade 2 or grade 3
- GTR / complete resection
- Younger age at diagnosis
How long ago were you diagnosed?
How has life been since surgery?
Did your tumor recur quickly or stay stable for years?
Did anyone avoid treatment for a while after surgery?
How are you doing today?
I know everyone’s case is different, but hearing real experiences from actual people helps more than statistics sometimes.
Thanks ❤️