u/LegolasGreenleaf

I had an awake craniotomy June 2nd, but I still only have the initial microscopic result and my MGMT methylated results. This is the microscopic result:

- IDH1 p.R132H (D2): Positive

- ATRX (D2): Mosaic

- p53 Semi-quantitative (D2): Positive in rare cells, favor null

- Ki67 Semi-quantitative (D2): 3-5%

The current diagnosis is favored to be a Grade 2 Diffuse Astrocytoma, and they believe they were able to perform a gross total resection (based on the post-operative MRI). Because the ATRX was mosaic, they can't definitively say it's an Astrocytoma yet, but they believe it is.

For the MGMT, the reported values consists of:

1. A methylation index, ranging from 0 to 17 that reflects the number of methylated CpG sites.
2. A methylated fraction, ranging from > 0 to 1, that provides an estimation of methylation in the analyzed specimen (reported only for positive specimens).
3. An overall methylation score ranging from > 0 to 17 that combines the methylation index and the methylation fraction (reported only for positive specimens).

My result is:

Value: Postive
Methylation Fraction: 0.986
Methylation Score: 13.81

Interpretation:
CpG methylation was detected in the MGMT promoter region.
This result indicates the presence of CpG methylation at the queried CpG sites in the promoter region of the MGMT gene in DNA isolated from tumor-enriched tissue of this individual’s paraffin section.

This is all I have so far, and it's about to be a month. Is this typical for detailed pathology reports? I am still waiting to know the results for: TP53, CDKN2A/B, ATRX (definitive results), and any other mutations.

I have been having to practice patience (and sometimes compartmentalization) as I wait for the results, but because my prognosis and treatment plan hinges on it, it's getting tougher day by day.

I had a relatively small low-grade glioma resected from my left frontal lobe June 2nd. Pretty gnarly stuff. I have 43 staples and it was an awake craniotomy. Two really fantastic neurosurgeons did the procedure at UCSF.

I am weening off of the steroids, but am still on my seizure medication. Both seem to make me feel.. angry? I'm not sure if that's the right word. It feels too strong, but I'm not sad necessarily. Frustrated, perhaps.

I don't feel like myself. I normally can watch TV, draw, read, or scroll on social media with no issue. But I can't seem to focus on ANYTHING. Fun or not.

The whole surgery experience was really wild. I remember being awake and doing the functional tests, but I wasn't anxious at all because of the sedation. The staff was all incredibly attentive and friendly.

I have photos but not entirely sure how much anyone wants to see them.

I don't have my full pathology report yet. They said it appears to be a low-grade and a definite glial tumor, but that it's "atypical" and "rare" so they're presenting it to their Tumor Board next week. For now, it's just a waiting game.

Did anyone else just feel off/not right? Did it ever resolve? Any advice?

Hi everyone. I'm having an awake craniotomy to resect and biopsy a low-grade brain tumor (they assume a grade 2 diffuse astrocytoma) in my left frontal lobe. I have some questions for those who have answers:

1. I am aware I do not need to shave my head. However, do you recommend having at least having short hair? Is it better for recovery to just shave my head? Were you able to wash your own hair if you didn't? I am not attached to my hair so I want to make the best decision for my recovery.

2. What was recovery like for you in general? How many days/weeks until you were feeling OK to work?

3. If you had yours awake, how was that experience? Do you remember it?

4. What is your best advice to prepare?

5. If this is what they think it is, I may be presented with the option of doing radiation/chemo. I guess this is less of a question and more of a general open-ended response of that experience.

Thank you in advance!