r/braintumor

I found out I had a mass in my brain in November of 2025, I got my surgery in January, and I returned to school in the middle of March.

It is now May and I don’t think I have fully processed that I had a tumor or got surgery on my brain.
When I found out, I didn’t cry, I kind of just felt like “Of course. My senior year of high-school and I have a brain tumor” and somehow that wasn’t even the worst thing that’s happened to me.

I was scared that I would die but I just tried not to think about it. If it happened it happened. I think going about it like this and not talking about it, trying to distance myself from my brain and my health, made me feel like it wasn’t actually happening. I almost had no emotions tied to having a tumor. It felt like it wasn’t even me that had it.

If I talked about it people just cried or got really weird and sad. Which I totally understand, if it was anyone but myself, I know I would have the same reaction. I just don’t and didn’t associate myself with having a tumor I guess.

I have always struggled with repression, I guess my body cannot handle some things so I just try and get rid of them. I went to therapy when I was younger and I have amnesia from past traumatic events, I’m scared I might repress some of this as well.

I know my memory is messed up because I got surgery on my brain. I’m sure that was bound to happen, I just don’t want it to be more than that. I feel like I don’t remember anything from November to January. My boyfriend will talk about things we did or I will look at my shelf and see little trinkets from adventures we went on but I have no recollection of them and have to ask my boyfriend what it is and why I have it :( I feel like I lost a piece of me and my relationship

Now,
I always feel a sense of dread when I think that I got surgery or had a tumor. I am struggling with mild emetophobia and intense anxiety (which I’m sure a lot of what I am feeling stems from, and my fear of forgetting), I probably need therapy, but unfortunately that is not in the cards for me.

I feel so weird about the whole thing

When will I accept it? How do I? Will it come naturally or is this something that I need to work through?

At this time, May 9, 2019, I was undergoing an awake craniotomy to evict Pierre, my Grade 2 astrocytoma brain tumor.

I was told by my team at Cleveland Clinic that I’d had a near complete resection, but because they couldn’t get it all I would need radiation and a year of chemotherapy. I would learn a few years later after I transferred my care from CCF to UH that CCF lied to me. They were only able to resect 10 to 15% of the tumor and to have attempted more would have been catastrophic. 

I had been told by CCF that I would probably have 5 to 7 years left. My team at UH agreed with that assessment.

For better or worse (and I change my opinion on this from day to day), I beat that estimate. Tomorrow officially marks the beginning of Year 8.

Tonight before I go to bed, I will raise a glass to toast the experiences I’ve been able to have since that day, as well as the memories I’ve made with Hayden. And at the same time I’ll cry about all I’ve lost and will never have.

Truly. Honestly. Fuck Cancer. 

Heyyyyy everyone hope you are all having an amazing day/ night depending on your country. I just want somewhere to talk to people that understand what I’m going through/ been through. I was diagnosed with my tumour when I was 17 and I’m now 21. I had an mri 6 weeks ago today and something caught me off guard. He asked if I had a follow up booked. Strange but I thought nothing of it till last week. I got a text to check the online portal which my letters are kept in and sure enough a neuroSurgery appointment was there. This brought back my feelings that I felt before and now that I’m old enough to understand what is happening, live alone and now have access to my own NHS app I look at my old neuro letters and omg I wish I hadn’t. It states that neuro oncology believes that my tumour is cancer but my surgeon has disregarded all of that and decided that I don’t need treatment. It’s payed off so far but my question is is today the day that I get the news that my tumour needs treatment. For background this man is almost impossible to get an appointment with so I’m like why have I just been given one without asking. Also I have redacted letters in my NHS app so is this the professionals talking about me but not wanting me to worry? Like I’m worried. I’m so scared and alone and I don’t know where to turn to. Words of comfort needed xx have a lovely day xx

Results came in positive today as well as a mass in the brain mri days ago... got called finally today by my doctor. Could tell she was crying says they are setting me up with specialist at a different main hospital. Fml

I was diagnosed with a 1mm meningioma at the left cerebellopontine angle 2 years ago and put on watch & wait. I kind of ignored it, then last December, started getting really bad vertigo, headaches, and blurry vision, but doctors couldn’t find any reason for it. Two weeks ago I had a partial focal seizure and the ER discovered the meningioma had grown to 9mm. Today, after my first neurosurgeon appointment ironically, I had another partial focal seizure.

Wondering if now I should prepare myself for surgery, or is the tumor still a little small for surgical removal? These seizures are freaking me out and disturbing my life - I’m forgetting words and can’t talk sometimes. The vertigo, blurry vision, and headaches are so bad that I’m really struggling during the day.

Hi everyone

Urgently required best suggestions for THE BEST DOCTORS in HYDERABAD Neurosurgeon for brain tumor (not sure if it is tumor or infection or something so need to do biopsy but the tumor is in speech area so the operation must be accurate we cannot afford a trail and error doctors. Need the BEST DOCTOR ) PLEASE HELP with the requirement

Need suggestions

The patient has no other complications due to tumour except for the speech difficulty and one of the doctors we consulted immediate surgery and robotic so need second and third opinions as well.

Even if you have OTHER STATES suggestions are also welcome.

If anyone have questions so if you can suggest accurate doctor , please do ask . But please don’t ignore.

(I know I’m not much active on Reddit hence the less karma but please don’t ignore , it is much required)

I spent 5 months with severe headaches out of nowhere and increasing seizure symptoms. I went to the GP countless times who couldn’t even recognise I was having migraines (my eye doctor had to do this) and referred me to a neurologist twice, once for migraines and also for the seizures. I went to A&E twice in this time because the pain was so bad and because of seizures where I was conscious but couldn’t speak and was jerking all over. The A&E triage-r said what I had wasn’t a seizure because I didn’t become unconscious which I’m pretty sure is not true?? Then the follow up doctor told me I was having cluster headaches even though the oxygen treatment didn’t make them go away. When I went to see the neurologist he was an incredibly patronising and unprofessional old man who told me that I was having something called Functional Neurological Disorder, which is common in women my age and I should just be happy I wasn’t having cluster headaches. So both he and the A&E doctors basically said I didn’t need a brain scan but that they’d give me one in four weeks just to be sure, though there’s ZERO chance it’d show anything.

Well literally the day after that I had to be rushed to hospital because I collapsed and had four unconscious seizures in a row and had to have emergency brain surgery to remove what turned out to be a large brain tumour. I feel really really angry, particularly at the neurologist who completely ignored undermined my situation and told me to take up swimming to resolve my neck pain and that’d fix everything :))

I feel like I am gonna have this chip on my shoulder if I don’t do anything to at least tell him how badly he could have fucked me over. To clarify I am not the type of person to want to sue a medical professional but equally I never want this to happen to anyone else. Am I being reasonable for wanting to reduce the chance of this happening again???

Does anyone have any advice? If not, all I’d say is ALWAYS ADVOCATE FOR YOUR YOURSELF. Medical professionals don’t always know best and shouldn’t always be trusted which is a shitty feeling. You know best if something is not right and you should always push for them to pursue it. Maybe it’s just the shock of the thing and I’ll get over it in time but right now I feel so mad.

i had three doctors tell me that everything i was experiencing was just health anxiety. i was on a waiting list to see a neurologist for a year before finally seeing one, and then we went from there to do some tests, and that's how we found out about my tumor.

Hi I'm 18 years old and just got diagnosed with a microadenoma on my pituitary gland. Spent a lot of time crying and freaking out over it, just wondering if anyone else has gotten diagnosed this young or had the same type of tumour and what treatment you got? My GP says I just need to live with it and it's not doing me any harm and I've probably had it from birth. But I can't help but feel like this is going to reduce my life expectancy and has gotten me in a really depressive state. I kinda want surgery but I don't know if it's going to make it worse.

Please don't write anything that's going to freak me out more ❤️

We were told my 81-year-old mom’s brain tumor was too risky to operate on. This is what

happened next:A few years ago, my mom was diagnosed with a meningioma.

At first, it didn’t seem urgent. The tumor was small, and she didn’t have any symptoms. She was also very afraid of surgery, so we decided to monitor it instead.

But things changed.

By around October last year, the tumor had grown to about 5.4 cm. She started losing vision in one eye, and at one point she even experienced hallucinations. That’s when we were told clearly: surgery was no longer optional. The situation was complicated.

My mom is 81 and has underlying conditions like high blood pressure. Because of her age and the tumor’s location, the surgery was considered extremely high-risk. We spoke to multiple doctors, but very few were willing to take it on.

That was probably the lowest point for our family.

We felt like we were running out of options.

After a lot of discussion, we decided to seek treatment in China.

In January this year, we went to Southwest Hospital in Chongqing, where we met Dr. Hu Rong.

What I remember most from that first meeting was how calm and straightforward everything felt.

He and his team reviewed my mom’s case in detail, answered all of our questions, and were very clear about the risks.

There were no guarantees.

After careful evaluation, they agreed to take the case.

The surgery lasted over 8 hours.

Waiting during that time was incredibly hard. It felt like time had stopped. All we could do was sit there and hope we had made the right decision.

When it was finally over, we were told the surgery was successful.

And then something we didn’t expect happened.

My mom recovered much better than we had imagined. She gradually regained her ability to walk,speak, and eat on her own. After everything, it honestly felt unreal.

Looking back, what stays with me is not just the technical side of the surgery, but the sense of responsibility and care we felt from the team throughout the process.

When you’re a family member, you feel completely powerless. The people in that operating room carry that responsibility for you.

I’m not sharing this to promote anything or tell people what they should do. Every situation is different.

I’m sharing it because when we were going through this, it felt incredibly isolating — like we had no clear path forward.

If someone out there is facing something similar, maybe this helps a little.

And I’ll always be grateful to the team who took on such a difficult case for my mom.

Hi everyone

Urgently required best suggestions for THE BEST DOCTORS in HYDERABAD Neurosurgeon for brain tumor (not sure if it is tumor or infection or something so need to do biopsy but the tumor is in speech area so the operation must be accurate we cannot afford a trail and error doctors. Need the BEST DOCTOR ) PLEASE HELP with the requirement

Need suggestions

The patient has no other complications due to tumour except for the speech difficulty and one of the doctors we consulted immediate surgery and robotic so need second and third opinions as well.

Even if you have OTHER STATES suggestions are also welcome.

If anyone have questions so if you can suggest accurate doctor , please do ask . But please don’t ignore.

(I know I’m not much active on Reddit hence the less karma but please don’t ignore , it is much required)

I am 27(f) with a toddler at home along with an incredibly supportive husband. My family is also very very supportive and only an hour away. I am set to have a craniotomy on 5/28 to remove a suspected low grade glioma in my left frontal region. Give me all the tips and tricks, goods and bads of the surgery. I truly have no idea what to expect, anxiety is starting to set in!

https://preview.redd.it/3hz5puuhfk0h1.png?width=1080&format=png&auto=webp&s=e9a1d3b3d4da38396289939eafb842a7d7f72d3d

I was diagnosed 18 months ago with a left frontal lobe benign meningioma. I was told it was nothing to worry about and shouldn't really cause me any issues, and that they would monitor it every 12 months.

At my last scan I was told it hadn't grown any more so next scan would be in another 12 months.

I've very occasionally for a few years been getting the 'icepick headaches' but it's so infrequent it hasn't really been an issue. This past week, however, I'm getting them quite a lot, accompanied by a 'whooshing' noise that comes and goes in my left ear.

Given that my last scan was 6 months ago and I was told there was no growth I'm just not sure if to ignore it or to go back to the consultant and explain what's happening. (Okay now I've typed that out I realise I probably should.)

Has anyone else got any experience of benign tumours the doctors are reluctant to operate on, causing further issues?

at the end of the day i am the only one that cares or experiences the suffering no one's pity has any reai mpact or can help. me in a productive way.

Hello did you or your loved one have any complications following a craniotomy removing a benign meningioma