r/braintumor

Hi all,

Ive got oligodendroglioma grade 2, GTR was december 2024. My follow up from my latest mri is Thursday but I received my mri report this morning, unfortunately it says disease progression.

Im a bit shocked and would have preferred being told at the follow up on Thursday. Also part of me is still in hope my consultant will say nah its all good, but it does look pretty obvious looking at the mris, now i feel left in limbo until Thursday.

This is with addenbrooks hospital cambridge.

Anyone had this happen to them before?

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?

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!!! 😊

hi. any one from red deer Alta….

I am just having a hard time finding my self again. family and friends are all gone now. because, they all thPugh after surgery, that things will go back to b4. I am just so alone.

this symptom is honestly more annoying than the seizures. I have temporal lobe seizures that are controlled with meds so my neurosurgeon doesnt to touch my tumour just yet. it’s also pretty deep in my brain (glioneuronal)

so right now we’re doing a watch and wait thing. I’m gonna see him next year, but in the meantime I’m dealing with vertigo. I was just wondering how everyone else handles it? I hate feeling like I’m gonna hit the floor. It makes me scared to be on my own. idk how else here deals with it and would appreciate any advice ❤️

My husband (70) goes for a follow up mri on Monday. Diagnosed/surgery Sep 2025 with abbreviated radiation, tmz, clinical trial and now Avastin. He's been doing well but this past week he told me something feels "different." His BP began to rise so the BP drug was doubled (I know Avastin can cause this but there's been no issue with it for months until now).

We're able to meet with the neuro oncologist for preliminary mri results a couple of hours after the scan. I'm worried. The last 2 scans showed improvement but I know one day that will change. I'm terrified of his reaction to bad news.

I still remember early after diagnosis when he turned to me in bed and, from the depths of his soul sobbed, "I don't want to die!"... It was excruciating. How do I respond to that? How do I care for the man I adore? I'm hoping for another good mri. I'm hoping his story is one where the turn for the worse happens abruptly so he doesn't see it coming, he doesn't suffer, he doesn't fear. His grief and fear hurt me more than my own.

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.

I have Lhermitte’s DuClos, a slow progressing brain tumor. It is consistently glossed over or ignored in medical settings, likely due to the rarity of the condition or clinician ignorance. I would like to get better treatment, any suggestions on how I do this? I haven’t had an MRI in close to 5 years. My last MRI was a non-success because I had a panic attack in the machine.

I have a neurocytoma or subependymoma in my left lateral ventricle. I'm having it removed in a couple weeks. I know screens are a bad idea. I am a daily reader but understand that will likely be difficult for awhile so I will make sure to have several audiobooks downloaded. I'm worried I'll go stir crazy without something to occupy my hands though. Typically, I'd occupy myself with logic puzzles, sudoku, word searches, crosswords, etc. but I'm thinking those may be hard to focus on as well. I've never been one for coloring books but will resort to them if needed.

Am I going to be stuck playing endless rounds of solitaire for a few days? How did you all feel? What kept you sane and helped distract from any pain? Also, how did you feel in the week after returning home?

I’m 2 weeks post craniotomy surgery how long does it take to feel normal again

Can anyone who experienced Colloid cyst tell me if im over reacting?

Its a little long and im sorry but im so stressed

I went to the hospital in November of 2024 in Saskatchewan Canada

This is takenfrommymedicalreport>>>>>>

(CT Brain w/o Contrast) 5 day history of left hand/arm paraesthesia and intermittent vertigo, r/o ICH

Probable 8 mm colloid cyst. No hydrocephalus or other acute pathology)

Someone called and said im on an 18 month wait list for MRI but I never heard from them again and cant recall who as my brain fog is pretty heavy.

I saw a neurosurgeon who told me chat GPT said my symptoms are not caused by a Colloid cyst.

She also said that Its far to small to cause issues and that surgery would not help anything.

These "symptoms" were neurological and unrelated to the cyst, so she'd send me back to a neurologist to figure it out. Ive never been contacted again

I thought these were different levels of the same medical field.. a neurologist and a neurosurgeon?

Im confused, im frustrated because I feel like no one believes me that things aren't working well in my body and me headaches are pretty much 24/7

Drs keep saying it's benign and not causing issues so not to worry.

But why do I have chronic headaches, shooting pains randomly through my body,especially my neck and chest, sometimes one eye look bigger,like the eyeball itself is swollen but its not red.

I forgot what a for was called, I can barely type, always dropping things,I stumble and get easily confused and loose my direction.

Im not even 40 and I feel like my 77yr old aunty moves with more ease

I put on so much weight as walking is difficult with all this going on.

Sometimes I feel like I loose blood flow in my body, more so when walking and moving in anything more than a snails pace.

Thank you for your time.

Edited to ask: does anyone know how drs determine it is Colloid cyst- medical chart says "probable "

I had an emergency craniotomy in 2024 for a meningioma on the right frontoparietal lobe. It was a partial resection. I woke up paralyzed from the surgery but recovered pretty quickly and did months of all the therapies and have lived a pretty normal life since then. I’ve noticed the last few months that I feel weakening in my hands. It was super noticeable last night after doing a big load of dishes by hand. I couldn’t hold the dishes right and just had an overall weakness feeling. I just had an MRI in the beginning of May to see if the left over tumor has grown since but I don’t get the results for another few weeks. I want to bring it up to the neurosurgeon but last time I saw him he was pretty dismissive of some symptoms I had. But that’s what I get for picking HMO over PPO to save money 😭 TIA!

As the title says doctors just discovered a 1.5-2in glioma in my right temporal lobe, its about an inch deep right above my ear. Ive never experienced any symptoms, no seizures, no loss of motor skills, no emotional mismatch, no vision changes nothing.

I asked the doctors a million questions but im still confused. I have millions of questions as would anyone with a brain tumor, although my most pertinent question is: Why haven't I experienced any changes even though a good portion of my brain is missing. I would expect at least an occasional migraine.

Another question I have is why is everyone treating me like its contagious, a lot of my coworkers seem to avoid me now after revealing my diagnosis.

Its all just so confusing and devastating.

Hello lovely people in this sub. I'll be brief- I went to the hospital for stroke symptoms. Docs did a CT and cleared me as not having had a stroke or TIA. They didn't mention anything else. I left and then looked at my CT. A <1cm calcified Meningioma was mentioned in the notes and viewable in the imaging.

Now, I didn't get any resolution for my symptoms other than "wasn't a stroke." I also understand that small calcified Meningiomas are usually not cause to be concerned about and I am going to follow-up with a neurologist ASAP. That said, is it a stretch to think that even a small meningioma could be the cause of my initial symptoms? I've been having gradual issues over the last 3 months and this seems like more of a horse than a zebra, all things considered.

I don't know if I'm being dramatic or not. Any perspective helps!