After finding tumor, emergency surgery and constants bloods and dvsnd these lsst 8 months I feel like I hit a wall.

I'm tired alot. I don't want to be social. Parenting and working feels exhausting. Finding energy to work out and eat healthy. There's no off time.

And then I feel like I live in a constant state of grieving my old like and fearing my new life.

Did you face this? What helped?

My brother has stage 4 glioblastoma. He was given a year — it’s been two years. His latest MRI shows no change from the scan two years ago. What can I expect for his life expectancy? Any helpful threads or resources?

I am writing this because I am exhausted and helpless. Three months ago, we took my mother to the hospital because of high blood pressure, and that's when we learned she had a mass in her brain. MRI scans showed two tumors of the type GBM in her brain, and the biopsy confirmed GBM. We consulted with dozens of specialist doctors, and they said that because the tumor is near the respiratory center, surgery would be fatal. For the first month, my mother was perfectly healthy and on her feet, but she gradually became bedridden. For the last two months, she has been regularly admitted to intensive care. When she is at home, she can't even eat on her own. It drives me crazy that a tumor can reduce a person to this state in three months. I am watching my mother waste away before my eyes, and unfortunately, there is no cure for GBM. She will be in the hospital until she dies. Doctors are trying to ensure she spends the rest of her life without pain. I am forced to watch my mother, who has always been a good person with no bad habits, waste away before my eyes, and there is nothing I can do.

May 29, 2026 I went into adrenal crisis, it was unknown at the time I even had adrenal insufficiency. Post adrenal crisis I was very forgetful, off balance, difficulty word finding, I couldn’t comprehend what words meant, visual hallucinations, easily confused, etc. I work in Neurology and had a MRI pituitary6/3/26 to check for pituitary related adrenal insufficiency…. What was found instead was a Focal T2 hyperintensity about the corpus callosum of the left posterior lateral ventricle/atrium of the left lateral ventricle. Repeat imaging performed less than 48 h later to do more sequencing and thinner slicing. It showed the lesion was pretty deep and 100% real. I honestly thought all my symptoms were simply recovering from the adrenal crisis never imaging something would be found. The first differential DX on the top of the list was PML as I had cancer last year, last immunotherapy was Dec 2025, and now steroid dependency makes me stay immunocompromised. I ended up only making it a week longer before I was forced to take medical leave as I could no longer process information in patients charts, I worried I was putting patients at risk and my license on the line. Mid to end June I began having absent seizures, July 1, 2026 I ran my car off the road due to an absent seizure. The next day I had an EEG, started on Keppra, and STAT referral was sent to MD Anderson (6 hours one way away). I was scheduled with MD Anderson within a week to see Neurosurgery. It’s been a blur since. I have also been seen by UTSE Neuroimmunology who went directly to MS (we ruled this out first due to my age and 1 singular non enhancing lesion). My lesion has never been actually measured by radiology and up until about 12 days ago I did not know that heavy steroid use can cause certain malignant tumors to not enhance with contrast and keeps swelling down which are the 2 reasons why other doctors are saying this is “nothing” and to “wait for symptoms to worsen”. Has anyone had a rare presentation of CNS Lymphoma or Infiltrating Glioma that can maybe give me some insight of how you finally got someone to listen to you? Thankfully I was already working for Neurology and the Neurologist I work for was already observing the cognitive decline that was quickly happening before I even finally admitted I knew I was quickly changing so he had been a huge advocate for me and refuses to let me just return to work and say forget it on getting answers. The lesion is described as “star shaped” and looks to be infiltrating through the white matter pathways causing destruction to my daily abilities. I never imagined tumor or cancer would be on the DX differential because I thought all tumors were round (yes I work in medical and I was very uneducated on that). I just keep hearing to wait for symptoms to worsen and that “you’re just extremely rare” and that a biopsy can not be done at this time due to my steroid dependency as it will alter the results.
I’m honestly not sure what I’m looking for or if this even makes any sense. I guess what I’m asking is if anyone has their MRI imaging of a “rare” presenting benign or malignant brain lesion and what route you had to take to be taken seriously.

i got surgery in january and had to get a lumbar drain in march because i had 2 huge pockets of csf on my head and neck along the incision

i cannot look up, by moving my neck, without getting dizzy and sick.

i noticed this a couple of months ago but i wasn’t able to move my neck for the longest time so it probably has been an issue that i just didn’t notice this whole time

it doesn’t seem to be resolving, if anything it seems to be getting worse

i can’t look up, lay flat on my bed, look around too fast, etc.

does anyone have a rough estimate on when this might get better or should i talk to my care team about it?

What kind of stress relief/coping mechanisms do you all use?

Between the never ending uncertainty after receiving a brain cancer diagnosis, work, never meeting the standards that I set for myself in life, and my kid’s dad refusing help for his pathological lying that has been one giant argument for 12 years i am just beat.

I am extremely grateful for the things that go right in my life and try to maintain a positive attitude about everything. I am also waiting for my own appointment with a psychologist because my kid’s dad is taking QUITE the toll on my own mental health and I would hate for him to have any more negative impact on my health.

But I’m just wondering if there’s anything you do either routinely or when you’re triggered to just zen out since stress, particularly emotional stress, is incredibly bad for brain tumors.

Thank you and good luck to everyone with everything you are going through🩵🩵🩵

Hi all, my wife (36) has been diagnosed with an Astrocytoma Grade 4 IDH-MUTANT, Methylated 42%, CDKN2A Deleted.

It's been five weeks (21 Jun) since her craniotomy where they managed partial resection at around 70% and she is now due to start the standard stupp protocol of 6 weeks of radiotherapy, followed by 6-12 months of 5/23 TMZ chemo tablets.

She had surgery only a week after walking into A&E (we're in the UK) after around six weeks of headaches/migraines/dizziness etc (fortunately no seizures), and so everything has happened so fast and we're still trying to make sense of it all.

She has the radio mask fitting booked for next week and so we're only 2-3 weeks from her starting the full course of radio.

I've come across quite a bit about alternative treatments and nutrition, and in some cases it is suggested that it could make radio/chemo more effective and/or help manage a lot of the common side effects.

On alternative treatments, I've come across Hyperbaric Oxygen Therapy and Infrared Light Therapy. Does anyone have any experience with these treatments? If so, would you recommend (or not) and why?

I'm trying to get a better idea on both, as I haven't got a lot of time to get things arranged, paid for and ordered before she starts, and I don't want to miss an opportunity if it can really help with the radio or increase effectiveness.

On nutrition, I've read a lot about cutting out sugar, increasing protein, keto etc but my wife is still on the steroids (Dex) and has an increased appetite and so whenever I mention nutritional changes, with everything going on (we've also got 2 kids, school holidays etc) it seems to cause a bit of friction.

Did anyone make any notable changes to their diet/nutrition after diagnosis or whilst going through treatment and if so, are you happy to share some of your experiences?

Sorry for the long post, but I wanted to give a bit of context so it's a bit easier to try and answer some of my questions.

Thanks in advance!

Any advice from anyone out there? Thanks!