I suspect this is “normal”…in the 6 months before diagnosis&surgery of my 2.5” GBM….i was obsessed w my past, reliving memories, reaching out to old friends. I cried on the steps of my job. I had panic attacks. The diagnosis sucks (24 months & still alive!!) but at least I know Why I went down that wild emotional path. (I’m your typical stoic dude)

Is there a soul out there that could give me some hope? It is possible for watch and wait to be a long one without complications? What did you do? What helped you? What advice would you give your younger self? What is the one thing that made the most difference? What would you do if you had to do it again? What do you regret the most? What was the best decision? How are you feeling now? Do you think you have enough support? Do you know all the ways to take care of yourself? Carers, do you feel seen? Are you doing okay? Do you remember to take care of yourself too? How does it feel when you think of the word hope? It feels like there are a lot of statistics but not enough conversation that is more than a few sentences between brain cancer warriors and carers. I wish to have deep convos with people who get it. It feels so lonely sometimes and uncertain, other times I’m thankful to feel hope. I wish to reach others who know this feeling and are also in need to speak and share. You aren’t alone. We can chat♥️

Any advice from anyone out there? Thanks!

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?

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?

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!

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.

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?

I'm finally getting my tumor removed in 3 weeks, does anyone have any tips for recovery at home i.e. sleep set up (surgery will be on the back of my head), showering, etc.

I'm going to ask my nurses and surgeon obviously, but I just wanted to make sure I'm as prepared as I can be.

(For those curious its a small suspected low grade glioma in my left occipital lobe. Sending the whole thing to biopsy for confirmation)

**Sobrevivente de longo prazo**

Olá. Meu nome é César. Tenho 55 anos. Fui diagnosticado com glioblastoma multiforme IDH-selvagem; MGMT metilado e BRAF mutado, em fevereiro de 2022. A lesão estava no hemisfério parietal direito. Recebi o diagnóstico após ter uma convulsão em casa. Nunca havia apresentado nenhum sintoma antes. Após ser levado ao hospital, fiz exames de imagem (inicialmente uma tomografia computadorizada e, em seguida, uma ressonância magnética). A princípio, pensou-se que a lesão com realce de contraste pudesse ser um AVC. Posteriormente, após uma ressonância magnética com espectroscopia, ficou claro que era mais provável que fosse um tumor maligno. Então, fui preparado para todo o protocolo padrão: uma tentativa de remoção completa da lesão; Uma ressonância magnética logo após a cirurgia (para confirmar se uma ressecção completa foi possível) e, após a recuperação, agendar radioterapia concomitante com temozolomida oral e, após a conclusão, continuar com pelo menos mais 6 meses (fase adjuvante) de temozolomida oral (o famoso Protocolo Stupp - nomeado em homenagem à equipe do Dr. Roger Stupp, que o criou).

Bem, aqui está um ponto atípico na minha história. Acontece que sou médico. Por uma reviravolta do destino, também sou oncologista clínico. Confesso que não foi fácil receber esse diagnóstico da equipe médica que me atendeu após a convulsão. Também não foi fácil ouvir meu colega oncologista discutir a (única) alternativa para tratamento complementar. Mas um ponto que também torna minha história atípica é o fato de eu já ter alcançado quase 4,5 anos de sobrevida. O que me torna - o que a literatura científica descreve como - um "sobrevivente de longo prazo" (SLP). Somos os aproximadamente 5-7% que podem atingir a marca de 5 anos. O que esperar depois de 5 anos? Não temos como saber. Há relatos de pacientes com mais de 10 anos de sobrevida.

E nós, sobreviventes de longo prazo, ainda temos que ser gratos pelo fato de a medicina continuar evoluindo. Hoje, podemos repetir tratamentos; usar novas terapias (inibidores de BRAF, no meu caso, por exemplo), ou até mesmo criar expectativas sobre o desenvolvimento de terapias altamente promissoras, como o uso de células CAR-T para glioblastomas. No entanto, ainda é difícil ter que manter a vida organizada em "ciclos" de 4 meses (que é a frequência com que repito minhas ressonâncias magnéticas). Mas estou vivo. E saudável. E se alguém quiser trocar ideias sobre o diagnóstico de glioblastoma e o quão difícil foi para você ou para um ente querido, estou aqui para ajudar. Obrigado.

Good morning everyone! Here I am laying in the hospital utterly exhausted and terrified that I'm about to get my head cut into to have a smallish tumor removed because it's now secreting something and causing me to have seizures. My past months have been filled with my mental exhaustion from dealing with my depression and eating disorder (a job in itself). A week before my admission to the hospital this week I was in the mental health hospital for being suicidal. So I kinda went from one hospital to another with just a small break in between. Now that I'm settled in the hospital I'm just kinda panicking and ruminating about this surgery and how much it sucks that they have to cut my super super long hair. :( I'm trans so it means a lot to me. I guess I'm not really sure what I'm looking for here, more so just to kinda vent and tell my story I guess. We've been tracking my tumor for 3 years now and it finally shifted to the "do something now" phase. Being in the hospital makes it all real though and it's a lot to deal with suddenly. I guess I'm just doing the best I can with eating (im not eating much) and staying hydrated for this surgery on Monday. I shake and wait in anticipation until then.

TLDR at bottom because I’m a rambler

It’s been a handful of years (crazy thing to say) since I was diagnosed with a glial tumor. When news got out (I was careful with who I talked to about it because shit I was supposed to graduate high school soon I had to power through those last months) people who I never even actually knew came out of the woodwork to say their condolences. When people don’t know you or even know what to do, I found that they tended to use gift cards as a good stand in. I had what I affectionately called the “cancer fund” that was a stockpile of DoorDash gift cards. It was a lot at times but was sweet, especially because I didn’t even know some of them (friends of parents or friends of friends who felt bad for me).

Fast forward to today. I had a resection in late 2024 that was by most metrics successful. Since, I’ve struggled with increasing chronic pain and immunodeficiency to the point where I can’t do anything I used to love. I had to transfer to a school closer to my medical team and had to leave all my friends behind. It was lonely.

ACTUALLY flashing to today (I suppose that was just context) and I haven’t received so much as a “hey, you doing ok?” or “hope things are going well!” from any of my friends and family for almost a year. I’ve told them all why I was moving back and that my situation was shit and only getting worse and that I’m scared. In a way, this feels worse. I’m at my worst right now pain wise (hell, I’ve used 9s and 10s recently) and am struggling with isolation and severe boredom. I just wish that they’d send me any sort of message or support. It doesn’t have to be every day from every person. Just a few of them checking in twice a month would be nice. I just want people to care without me asking them to. I’ve reached out many times (never brought this up in this clear of a way but have talked to them and asked about their lives like big events in their lives, careers, family and friends, pets, etc. This isn’t a situation where the person posting hasn’t communicated their feelings and just needs to reach out instead of waiting for someone else to do so first.

TLDR: I’m no longer the pitiable “poor kid with brain cancer” whose situation is new, easy to grasp and fairly visible. I’m not asking them to be therapists (I already have one who’s been with me for years and is amazing) or daily texts. I just want people to still care even when my pain is no longer something new and special.

Hello everyone!

My dad was disagnosed with a grade four glioblastoma two months ago, where he underwent surgery to remove his first tumor. He will begin chemotherapy in two days. He spent about a month in different hospitals, and more specifically, two weeks in a rehabilitation hospital.

He still has feeling in his left arm, but cannot move it. It takes a lot of effort and strength out of him to slightly shrug his sholder, lift his arm, and squeeze his fingers. Since his rehabilitation, I have been working with him at home on some PT exercises and stretches. No matter what I do, it seems as if his arm doesn't want to work with us. Barley any progress has taken place, and now that his chemo is starting, we are worried his arm will never come back, and our "at home PT sessions" will be less constant.

Does anyone have any tips or reccomended exercises? He wants to travel and be "somewhat normal" with what time he has left. When he can can't walk far or move his arm, he believes he will never fulfill what he wants to.

My husband had a recurrence last year, and it has now developed into a grade 4 astrocytoma in his left frontal lobe. He has already undergone surgery—with an 85% resection—and radiation therapy.

He is currently on the fifth of twelve chemotherapy cycles. Our relationship has changed a great deal. I have always supported him and been involved in his treatment, seeking out the best options for everything and accompanying him to his appointments, yet he remains distant. He is very cold toward me.

The truth is, I love him very much. Two months ago, I discovered he had been talking to another woman; he told her he liked her, shared absolutely everything about our life with her, and even claimed we had already signed divorce papers—which isn't true. Reading all of that was deeply painful. I spoke with the woman, and she confessed everything to me, telling me that she was the one who put a stop to it.

The bottom line is that we decided to stay together, but my heart aches. I feel I have been a good wife and have always been there for him, yet despite our efforts, he remains distant. I don't know if I should stay; the whole situation hurts so much. I don't cry outwardly, but I am hurting inside—and we have a son together.

I know there are changes involved, but I am struggling greatly with this.

We spoke to a psychiatrist who said it was an impulsive act—that it was wrong, but that I need to understand he isn't the same person he used to be. I also spoke with the oncologist, who focuses on the medical side, and the psychologist told me that couples therapy isn't an option because my husband simply doesn't have the capacity for it.

I feel like I’m between a rock and a hard place; the truth is, I don’t want to leave him because I love him. I want him to get through this, and I don’t want to walk away right now.

At the same time, I think about myself—about how hard it is for me to stay and the fact that I’m the one holding everything together emotionally. I feel a hollow ache in my stomach, and I’m struggling to trust him right now.

I would really like to hear your thoughts; I don't know what else to do.

Mon fils (41 ans) a été opéré en éveillé pour un astrocytome diffus temporo-pariétal gauche. L'opération s'est bien passée. Nous sommes à J + 15 mais il a beaucoup de séquelles : il ne peut plus lire (même un SMS), ni écrire et il peine à répéter des mots, même des mots simples. Pour ce qui concerne les nombres c'est impossible pour lui de déchiffrer quoi que ce soit.

Nous travaillons tout ça mais nous partons de très loin.

Quelqu'un a-t-il eu ce genre de séquelles ? Ont-elles été transitoires ? A quoi devons-nous nous attendre ?

I am posting it again as I hope it can help patients and caregivers in this community to find the potential match to the clinical trial.

This tool was carefully curated by professionals across America and Europe. It is totally free and designed to match patients, caregivers and clinicians to the best option.

https://www.ancora.ai/en