r/braincancer

Just venting here

I live on a beautiful island in the Caribbean, recognized frequently for having the best beaches in the world. Recently I started to visit daily and just sit there alone, listening to the ocean, the breeze, the chickens lol. & I can’t help but to soak up the moment. When I leave my house and drive, there’s the beautiful blue sea. But I don’t see it. It’s always been there. I won’t always be here, and neither will these beaches. Nor this moment. I’m so thankful to be a part of right now, to be here. To sit and admire what’s in front of me while it’s in front of me.

3 months from today will be my 1st cancerversary, completion of treatment.

Everyday since the day we met, my husband says first thing in the morning “it’s a beautiful day to have a beautiful day.”

Thanks for reading

My husband was diagnosed with Oligiodendroglioma grade 3 in Sept 2024 and he had a total gross resection and then went through radiation and 5 rounds of pvc chemo. His tumor has all the good traits that make it more susceptible to chemo etc. he had a scan in February that was clean and then a scan today. One slice of the scan shows a white dot, that cannot be seen on any other slices and they think it is either a growing blood vessel or the tumor coming back. It has not been that long. He just stopped chemo in August of 2025. He has another scan in 4 weeks. Can this just be a blood vessel? Has anyone else had a scare like this? It is right where his old tumor was.

Question to those who shaved their head after (or before) radiation - is your scar very noticeable? Whas it a huge adjustment? How did other people react at the view?

Hi all! I’m Michele Crawford and I am a Peer Advocate for the International Low Grade Glioma Registry. It is an effort to advance the study of low-grade/IDH-mutant glioma.  I highly recommend this research project as I too have a low-grade glioma.  Diagnosed in 2019.  It is a Diffuse Astrocytoma Grade 2 with IDH1 mutation.  I’m also currently stable. Little is known about our tumors and that is where you come in. Here are details to see if you qualify:
 
Must currently be 21-79 years old.  Age at diagnosis doesn’t matter!
 
Must have confirmed pathology (via surgery) for Grade 2/3 glioma. 
 
I’m sure you have all sorts of questions.  No worries, that is what I’m here for.  This is just a little post to garner some interest.  Anything you want to know, I’m your gal.  If I don’t know, I’ll find the answer.  For more information, feel free to respond to this post, go directly to https://gliomaregistry.org, or if you want to contact someone directly, email, glioma@yale.edu.
 
Thank you!!! 😊

I posted in here about my dad like a year ago (i’m gonna try to link my original post), but it’s been 2 years since his diagnosis and he’s had 3 surgeries, done radiation & chemo. His speech is pretty much not understandable and he doesn’t understand much either at this point. Almost 2 weeks ago we decided to stop all treatment because his cancer is beating it and he was having some side effects. Since his appointment he is barely getting out of bed, occasionally to use the bathroom (which he isn’t actually making it to the bathroom) and to smoke weed sometimes. He hasn’t even eaten more than 3 meals since this past mothers day and is not drinking any liquid. We aren’t giving him his normal meds anymore because he’s not eating. He is refusing to eat, all he says is “I want to die”, “I’m dead”, “Shoot me” and things of that nature. We have hospice coming to do an assessment in the next day or two. I’m just scared, I’m now 22 y.o. and I never expected this is what life would look like. He’s officially given up and I have now given up all hope as well.
https://www.reddit.com/r/braincancer/s/6YypyKRcFz

I never thought I'd be on a subreddit like this one. I always heard of families being destroyed by these things, but naively never truly considered that it could affect my own. Here I am, though. I am sorry if my explanation isn't the best, I can never remember all of the terminology. This may also be all over the place.

My (23F) mother (43) has been diagnosed with a petroclival meningioma after 3 years of increasingly concerning symptoms. These symptoms include a decline in mobility, dibilitating pain, loss of vision, loss of hearing, coordination problems, speech problems, memory problems and seizures. These have all been more common and aggressive in the last few months. After the original scans and tests, I suppose I was still in denial, but two weeks ago she has seen the neurosurgeon. It wasn't good news. There isn't really anything they can do to treat it. They can only treat her symptomatically with medications. They are tracking the growth of the mass itself aswell as her symptoms. The tumor is growing at a concerning rate, and the doctors don't want to operate because of the location and risk. For this same reason, they don't want to do a biopsy, though they are fairly certain it's cancerous due to central necrosis showing up on imaging. My mother has decided that she does not want any cancer treatment. I don't blame her. As terrible of a pill as it is for me to swallow, I understand that it is her body that will be going through the suffering, and I will support her no matter what.

Ever since my mother came back from that appointment with the neurosurgeon my bubble of denial has burst. It feels as if though time has stopped moving for me while the rest of the world keeps spinning. My mom is my best friend. We do everything together. Seeing her suffer is the greatest pain I've ever experienced. I cannot even begin to imagine what she must be going through.

The news has shaken my entire family. My stepdad is being treated by a psychiatrist now as he is not coping. My biological dad (who has remained close friends with my mom since I was very small) is getting into trouble at work, because he cannot focus on anything. My fiancé who has come to see my mother has his own throughout the years has completely retreated into himself to the point where I can't reach him. All of this, as you can imagine, has only made it all harder on my mother. I don't blame anyone for their reactions, I just wish I could spare my mom from worrying about all of us on top of worrying about her own condition.

As for me? I'm not coping. I've been operating like a machine trying to support everyone whilst caring for my mother. (I have moved in with her months ago to assist her with daily needs). My stepdad, biological dad, and fiance all work long hours, so it's mostly just me and my mom at home. I work from home and have been sweating blood trying to keep the household running, my job done, my studies up to date (I'm enrolled in distance learning and graduate July), my mother taken care of and the pets taken care of all whilst feeling like my entire world has shattered.

My mother has told me she feels more like a burden by the day as her symptoms worsen, and I don't want to add my own imminent breakdown onto everything else she is already carrying, but I need help. I can't afford a psychologist to talk to at the moment because all spare finances have gone towards paying for her scans, appointments, hospitalizations, gas money etc...

I don't know what to do or who to turn to.

Kind strangers, any advice or even just words of support would be appreciated. How do I properly support my mom and my family without pushing myself past my breaking point?

Went into the hospital for what I initially thought was a concussion(I took a blow to the head) after the CT scan they told me there’s a 5.3cm what they think is a cyst. But they can’t tell me for sure. Said I hav to talk to a neurologist and get a Mri scan.

Just wanted to hear some thoughts from people that might have experienced this. the Canadian health care system a joke

Thank you in advance

Silly topic and question, but I am wondering whether other people after surgery also experience a more painful brainfreeze when drinking slushies/frappes? I really had a sharp pain but am not sure if it was more than before surgery. Regardless, I won’t ever be ordering that again haha.

((TLDR: I am a normal lady with husband, daughter and a terminal cancer diagnosis.))

My life is typical white female fodder. Small town, top 10 (#10) class of 2005. Small School. My class had only 22 grads. Summers were spent getting gorgeously sunburnt, detassling corn for $5⁰⁰, and working at an icecream shack. As an adult I've worked in the customer service field: waitressing, barista, computer service & repair clerk, bartender, concierge, manager of specialty cigar and liquor shop, Census Data Entry, Project Marketing. Then I got married, popped out a baby girl and found out I'm dying from Brain Cancer. All within a year. 2019 was crazy. I don't work anymore. Make extra cash from freelance arts n crafting. I've got an estimated 6 years left to live.

So give it to me, Ask Me Anything.

having a craniotomy in the next few weeks! I need some help and tips as to what I should purchase to be well prepared for hospital stay and after getting home!

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!

Happy Oligo Day to the 20,000 Americans living with this disease. You matter. Your lives matter. And you deserve to be celebrated.

People with rare brain cancers are often overlooked by the medical and pharmaceutical communities. There simply isn’t enough attention, funding, or financial incentive directed toward finding a cure. In the case of oligodendroglioma, only about 20,000 people in the U.S. are living with it.

And the hard part is, there is no cure.

For many patients, “hope” means praying their tumor doesn’t grow again after surgery or treatment. But when it often does, they are forced back into another cycle of scans, uncertainty, surgeries, radiation, chemotherapy, and fear.

What many people don’t realize is that even after surgery or treatment, the cancer doesn’t simply disappear. From the outside, it can look like someone is “better” or even cured. But for most brain tumor patients, there is still a massive elephant in the room.

The reality is that this never fully goes away. They live with the weight of it every day, knowing it could return, grow, or change their future at any moment. That uncertainty follows them long after the hospital stays and surgeries are over.

That’s why I continue to talk about it. Because these people matter. Their lives matter. And they deserve more than being overlooked.

Hallo,

since almost 4 years im feeling bad, i´m tired everyday, unrefreshed sleep i wake up very dizzy like i´m drunk not able to type my code for my phone correctly. Light pressure in my forehead everyday,my whole head feels tight, my vision is blurry, depression symptoms like bad mood, lack of drive , heavy concentration problems i even forget what people told me after some minutes, or to counting units in the work i need to start multiple times back from 1, finding words and sometimes i stutter.

What i have done so far.

- Blood test everything fine

- thyroid is fine

- sleep laboratory everything fine

- taking antidepressants for over half a year no improvement

This week, my psychiatrist gave me a referral to a radiologist to get an MRI from my brain.

What kind of symptoms did you guys had ? Asking out of curiosity i´m not scared or something

I checked my old MRI scan from my paranasal sinuses scan 2 years ago before the operation and found this (Bone window scan ) its right there where the pressure is in my forehead

https://preview.redd.it/2b1p3o9o1k1h1.png?width=912&format=png&auto=webp&s=c7c33ef1d1cac6c163f032299376a6e0732f12e6

After having regularly seizures every 2-3 months since surgery and just another one today with maxed out Briviact and Perampanel 6mg/d and me getting more and more frustrated after every subsequent seizure, how long did it take you to be stable on a drug regimen?

I have a low grade glioma dont know the grade yet

i could never get a job after college and felt lost then and even more lost now after getting a terminalcancer diagnosis . on a day to day basis i dont know what to do with myself i struggle to get out of bed or find a reason to leave the house and feel like the life i have left is wasted scrolling on my phone. I desperately want something to change i've been in a deep depression the last 3 years

Hi,

Just wanting to see if any one has experience with these two drugs? I know that the Lomustine is the chemo drug, but what we're your side effects, what do you wish you knew before you started?

I've got AA3, however, since finishing treatment August last year (2025) of temezolomide, it has returned. It's returned sometime between 18/01/2026 and 03/05/2026.

I don't know what to think I'm fairly confused but we are hoping for the best and preparing for the worst, has anyone else experienced it returning so fast? I'm just lost and confused and have two young children, but it's not my time.

Thanks for reading if you read this confusing post!

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 ❤️

Hi all, I was diagnosed with a glioma in my right frontal lobe in March. The doctors suspect that it is grade 2 and surgery was scheduled for the end of summer but I recently had an MRI and it’s been growing fast, meaning my surgery had to be brought forward to next Friday. Obviously this gives me a lot less time to mentally prepare myself.

In terms of the surgery itself I’m not too worried but the thought of going from my able-bodied, normal life to being in recovery and having to change my entire lifestyle in the space of 8 hours worries me.

I know many of you would have been through this and probably had the same worries as me. How has it panned out for you? Should I be as worried as I am and is there any advice that you could give me?

I really appreciate all of you who contribute here because it helps ease my nerves ☺️

Hello friends, I (22F) have to undergo an awake craniotomy because doctors found a brain tumour in my frontal lobe. This is gruesome for me and I don't know how to feel about all of that.

If you have gone through an awake brain surgery, would you mind sharing me some tips and pieces of advice ? It would be of grand help. I'm really scared.

You can, of course, share your experience here. I'll read everything 🙌

Thank you in advance ❤️