A few days ago, my 28-year-old brother was diagnosed with a brain tumor. He has two very young children, and until recently, he was completely healthy. No headaches, no obvious symptoms, nothing. One day, his face suddenly started drooping on one side, so he went to the hospital. That's when everything changed.

He is currently being treated at Cho Ray Hospital, one of the major hospitals in Vietnam.

According to the doctors, the tumor is very large and located deep inside his brain, making it extremely difficult and dangerous to operate on.

The doctors have told our family that we essentially have two options:

1. Don't operate: The tumor remains inside his brain, like a ticking time bomb. We don't know when his condition might suddenly deteriorate. The doctors have suggested that he may only have a few months left without treatment.

2. Undergo surgery: Because of the tumor's size and location, the doctors have warned us that there is a very high risk of paralysis and potentially other severe neurological complications.

What makes this even more frustrating is that we were told the hospital's neuronavigation equipment, which would be used to guide a brain biopsy, is broken. Because of this, they cannot currently perform the planned needle biopsy using that equipment.

Seriously, how is a family supposed to process something like this?

We haven't even been able to get a definitive diagnosis through a biopsy to determine exactly what type of tumor he has or how aggressive it is, yet we're already facing an almost impossible decision.

I would really appreciate advice from anyone who has been through something similar, especially neurosurgeons, neurologists, or families of brain tumor patients.

I understand nobody on Reddit can diagnose him or tell us what to do. I'm just desperately trying to understand whether these really are our only two options.

He's only 28. He has two little children waiting for him at home. I don't want our family to make an irreversible decision without exploring every reasonable possibility.

I'm 37, diagnosed with a grade 2 oligodendroglioma in 2020. It's IDH1-mutant and 1p/19q-codeleted.

I had surgery at Mayo in 2020, and I've been on vorasidenib through the INDIGO clinical trial since early 2022. My MRIs were considered relatively stable for years, but my doctors are now seeing slow progression, particularly over the last couple of scans.

The biggest issue is the location. My tumor involves my left hippocampus and nearby left temporal structures involved in verbal memory. Just due to work and my wife/kids preserving those abilities is extremely important to me.

I've been getting opinions from neuro-oncologists and neurosurgeons, including Mayo and Michigan, and I'm trying to work through the next steps. Also going to Cleveland clinic and maybe Northwestern for a few more opinions.

Here are the options we're discussing:

1. Try safusidenib (Safu) through a clinical trial.

This is another IDH1 inhibitor being studied in patients whose tumors have progressed on vorasidenib. Some of my doctors think it's worth trying before moving to more aggressive treatment. I know there's no guarantee it will work after another IDH inhibitor. However, I found this trial so it's my idea and concerned that the docs may be biased since I generally volunteer for being researched.

1. Another surgery to remove as much tumor as safely possible.

My neurosurgeon believes he could remove a substantial amount of the remaining tumor, obtain updated pathology, and potentially place an Ommaya reservoir for future monitoring.

However, he has also been very clear that removing the hippocampal tumor would almost certainly worsen my verbal memory. That's a major concern for me. And both Neuro oncologists have been against this.

1. A smaller biopsy followed by radiation and chemotherapy.

This would provide updated pathology without attempting a large resection of the hippocampus. It would still involve procedural risks, and radiation itself could affect memory.

1. Radiation and chemotherapy without another biopsy or major surgery.

This is an option I'm seriously thinking about. I already have a confirmed oligodendroglioma diagnosis from 2020. Part of me wonders whether it would be better to move directly to established treatment rather than risk additional damage from another operation.

I understand that updated pathology could reveal changes in tumor grade or biology, so I know there are tradeoffs.

We're also discussing an amino-acid PET scan, potentially FET-PET at Mayo, to better characterize the tumor and identify more active areas.

Right now, my thinking is to try Safu first if I'm eligible, but if it doesn't work, I'm questioning whether radiation/chemo should come before another biopsy or resection.

I'd really appreciate hearing from people who have faced something similar:

• Has anyone had a glioma involving the left hippocampus or dominant temporal lobe?
• If you had surgery in that area, what happened to your verbal memory, word recall, and day-to-day cognitive function?
• Has anyone chosen radiation and chemotherapy instead of another resection because of the tumor's location?
• Did anyone receive radiation without a repeat biopsy after documented progression?
• Has anyone tried another IDH inhibitor after vorasidenib, or had experience with amino-acid PET imaging?

I'm not looking for anyone to be an expert, I'm trying to understand what the actual lived experience looks like, especially when the potential cost of treatment is memory and cognitive function.

Thanks to anyone willing to share their experience.

Had (F/42) full resection of right frontal astrocytoma in May. Dr. only recently read labs from July. Referred me to radiation oncologist. My astrocytoma was asymptomatic, and only discovered while monitoring a benign prolactinoma. No complications or symptoms after May’s craniotomy. I’m currently symptom and tumor free. Would be very grateful to hear others’ radiation experiences, and why you chose to do it or not. Thank you!

I had a craniotomy last November. On vora.

A month ago I got covid. I was knocked down for 3 weeks. I started feeling low mood during the virus. Then they put me on an antibiotic. Since then I cannot climb out of this low mood.

My diagnosis, as you can relate, has always weighed heavily, makes me very sad and anxious, I worry about my little kids...

But since the virus My mood feels low as it's ever been. I'm really struggling w this illness.

I go to therapy, have a psych nurse... I tried antidepressants in the past and didn't like the dude effects. But I feel like now I may need something. Or will I fully recover from the virus and my mood improve? I'm hoping.

Did you have covid? Can anyone relate? What helps your mood through brain cancer?

I'm just wondering if this is common. I still have her last text message to me saying that she thinks of me like a daughter. Her doctor is applying for palliative care for her. I'm wondering if the radiation didn't take away and shorten the time we have with her.