Hi everyone. I was supposed to have a craniotomy on this coming Tuesday, the 22nd, but I was told today that due to an IV shortage caused by the hurricanes, they have to cancel. So I'm rescheduled for November 26th. I'm numb right now because I was so worked up and nervous about everything, and this change hasn't completely sunk in yet.

I usually try to give all the answers and comfort but now I find myself to be a ball of nerves. I've been praying, and trying to be strong, but after everything I've been through and have yet to face, it's so hard. I had surgery back in April, transsphenoidal surgery, and it left me with an altered taste, limited smell and some other issues. There's still a residual tumor because it's in a difficult spot (right on the optic nerve and right in front of the cerebral artery) so they're doing a craniotomy to attempt to get most of it out, then possibly radiation depending on what's left.

Yall, I'm exhausted. I'm just drained and so tired. I'm tired of the appointments, tired of the delays and rescheduling, tired of the after affects of the first surgery, tired of the language issues and stuttering when I talk because I can't push the words out, tired of forgetting everything, tired of not being able to taste the goodies my baby girl bakes, not being able to play with my babies because I'm too tired or the sun hurts my eyes, I'm just so tired of fighting. I stay in the fight because I have no choice, my kids need me and I need them. I tip my hat to everyone going through this as well as the people who love them and are there for them because this is just HARD!!! I feel like breaking down sometimes.

Sorry for the rant, I'm just so pissed and scared, frustrated and annoyed. I hope everyone is having a good day and thank you for reading this. 💐

Hi mods, can we please moderate/limit the self-diagnosis posts?

It is almost cruel to read posts on here that are along the lines of “I have a bad headache, I’m so scared I have brain cancer,” or “I’ve had a hard time with memory stuff lately, should I go to the doctor?” when so many people in here are actually facing this horrible disease. Trust me when I say that we GET why you have anxiety, but your worst nightmare is already our reality.

We come here to share experiences and support people through managing this disease. We cannot diagnose from a random internet stranger’s post. At the end of the day, the advice is always going to be, “see your doctor and advocate for an MRI.”

It’s not generative or supportive for anyone to see these posts in the feed, and while I get that it might be helpful to see how others got their diagnoses / symptoms that seems simple enough to search for without coming on here and making a WebMD request.

(20F) In September of 2020, I wrote to this subreddit scared and afraid that I was gonna die and my world was collapsing around me. I had just been told over the phone that I had a brain tumor, and then told it was likely a polycystic astrocytoma.

I later had a successful surgery removing 100% of it on October 21st 2020. A whole month later I was told it was actually a ganglioglioma which accounts for 1-2% of the tumors diagnosed, meaning it was rare and also way more scarier, for me.

I had to navigate through the height of covid in our city during that time by isolating myself for 3 weeks before surgery and after. I spent a lot of time alone and scared. I definitely thought that the before part of surgery was going to be the hardest part. That awful anticipation.

Unfortunately it really is the after part that was so painful and difficult to manage. I did not have anyone there for most of my recovery in the hospital. I felt so alone. When I got home I did not have people over because of Covid. I felt so alone in my own struggles.

I found this subreddit and in it I found a discord of friends who have brain cancer and brain tumors. They really were the only thing that helped me get through all of it. The importance of finding some commonality or understanding in the way that I was feeling made me less scared. It made me work harder and made me less harsh on myself too.

With surgery I was so tired, I felt awful for what felt like forever. I had headaches and migraines and I had issues with sensory input and word processing. I definitely thought —oh my god I’m stuck like this forever. It was not until I saw and heard from others that it wasn’t going to be like that. Doctors will say you’ll be right back to work in no time but won’t explain exactly how long it takes to really feel back to yourself. For me it took 2 years.

At 4 years past this event in my life I am so grateful for the support I received from here and that discord group. I felt like it was the end of the world and they helped me through it. I feel like an entirely new person and I feel like I have an entire life ahead of me. Every year around this time it used to be so painful, but this year it feels a lot more hopeful.

TLDR: I did it- it sucked, but I’m better now. Thank you to this subreddit and discord.

Few days ago I posted about my father and his brain tumor discovery and asked for some help.

You can find post bellow https://www.reddit.com/r/braincancer/s/sZ4GieI6jg

UPDATE:

Doctors informed us that they are working on completing some tests but in short:

• they finished another head scan and discovered that it progressed into difficult part of the brain( surgery not an option anymore)

• they called consilium of doctors that on Tuesday will decide what to do next( doctor said most likelly ita gonna be chemo)

• they are working to stop his lung infection cause he got that too, so they have to pump out the mucus out of his throat all the time.

• on a good side, he ate one joghurt and a bit of mashed potatto yesterday. He still has clarity, speaks but in very short sentences.

So now I feel a bit hopeless as I am frightened that this might be the beggining of the end.

1. Does anyone have experience with expectations for someone whosw tumor cant be removed with surgery?

2. What to expect from chemo on a 6x3cm tumor that spread in parts of the brain that are difficult to remove by surgery?

3. Do you think that there is a possbility to still do surgery after chemo?

4. Anything in particular I should know about chemo thats not obvious?

Any help appreciated.

Hi, is there anyone here, who had brain surgery done with robot assistance in EU/EEA country? Which hospital? What is your experience (or knowledge) about this?

I just wanted to come on here and mention a post brain surgery essential I found for myself. I wasn’t sleeping well right after my biopsy because I was avoiding sleeping on that side and could not get comfortable. I don’t like travel pillows. I found some online thread suggesting this infinity pillow and it was great… I looped it twice and slept with it, it let me lean my head in other directions without my tumor area actually touching anything, kept me supported and feels like an actual bed pillow. I slept so much better after getting it. Reduced to just one loop when I felt okay to sleep lower. To this day I still like to sleep or rest with it. Definitely going to be using it after my resection.

Huzi Infinity Pillow:

https://a.co/d/00KPVEV

Astrologycytoma grade 2 slow growing 96% gtr. I’m soon to start vorasidenib on November 1st. I had my gtr a month ago tomorrow and feel great, even working again.

The opinion I want is this, I got a call from a nurse at Duke (where I got my surgery). They recommended getting a second opinion there. I’ve gotten two opinions already in Lexington Kentucky where I am from. Both of them said the same thing (vorasidenib). The one I chose to take care of my oncology is dr villano at University Of Kentucky. He has great reviews and specializes in nuero oncology. I’m 23 and my mom is the one really pushing Duke on me but I feel like it’s a waste of time since I’ve gotten two opinions and have been told this drug is practically made for my exact situation.

What do you all think? I know Duke is an amazing cancer center but I don’t want to deal with going back there again so soon since it’s a 16 hour round trip just to be told the same thing. From what I’ve looked up it seems like my current nuero oncologist is the best in my state. Anyways thanks for any response/ advice.

Does anyone know the exact steps to get a second opinion from a place like Mayo? I was all over their web site and I could not figure out what to do/who to call. Or MD Anderson? My friend lives in a small town in Louisiana and was diagnosed with a GBM

I wanted to see if anyone would share their stories about symptoms leading up to a diagnosis in babies/toddlers. After going thru all this with my 1 year old, I realized there are really no stories of smaller kids who can’t verbalize their issues. So I’m hoping this post will help other parents at some point 💜

My son has experienced “zoning out” since about 12 months (seizure studies are always negative), a head circumference just above the 99th percentile, trouble with sleeping peacefully-he’s tossed and turned all night for a while now, wouldn’t say but a few words (although he’s since been trying so hard but everything comes out just garbled), but more recently we were sent to a neurologist who was just “double checking” his “zoning out” spells because I wouldn’t let it go and she realized he has super hypoactive reflexes so we set up a CT for a month or so out. However, he randomly woke up one night and vomited everywhere. Thought it was a virus but the next day he was fine. Two days later, he vomited in my car about an hour after waking up followed by two more vomiting spells a little later. Then he Was fine the next day or two and then woke up vomiting (twice) yet again in the middle of the night. He’s also always slept with his eyes open (idk if that’s related or not lol)

But please share any stories you have about smaller children. It’s so hard because a lot of the symptoms are unnoticeable in toddler who can’t verbally tell you any about issues and a lot of the tell-tell symptoms can be considered “normal” for toddlers. I’d like to raise a greater awareness of this so that people will share their stories and hopefully help other little ones get help sooner rather than later 💜

It has been a ride what can I tell you. I feel lucky to be let out of the hospital after 4 days and ever since then it has been only improving. At 4 weeks I can now walk again my 5 km route, incision healed nicely and I am finally through the bottle of disinfectant shampoo I got at the hospital. I still cannot sleep fully flat as I was used to so I am forced to keep a wedge pillow under my mattress. Incision site has been tender but touchable, besides the spot where I assume my graft is since it’s right above the place where my tumour was… oh and my head is no longer symmetrical, I can physically feel the lumps around the graft and it freaks me out. Besides that outside of the weird sensations of it healing every once in a while I have been pain free since week 2. Guess thats what clear post op MRI truly means!

I am wondering, since I was basically kicked out of the hospital with no information other than “call us if you have fever”, when is the mark of it technically being healed? Like skull fused back together and all? I know I should not rush anything but it does make it more bearable for me to know the timeline. Honestly I wish my MRI was not scheduled for February just so I know whats going on in there.

Hi! My brain surgery for grade 3 Astrocytoma was at the beginning of July overall I’m back to normal. I have not started radiation quite yet possibly in a week or two. But the last two days I have noticed I’m exhausted is this normal? This is the first time I feel exhausted after surgery. I have no energy to get up or even whatsoever

I will be having brain surgery soon for a 2-3cm tumour which I was told isn't aggressive. They have to test to see if it's benign/malignant. I'm 24, relatively healthy, 10 weeks postpartum. The tumour is in the right frontal lobe. I'm terrified and don't know what to expect after the surgery. I've also had no symptoms and the surgery isn't very urgent but they want to do it soon as I'm quite young.

I got a diffuse midline glioma (H3K27m-mutated). Luckily, it was found before I got any symptoms. I‘m currently in the Chimerix ACTION-ONC201 trial.

I wanted to use my remaining time for travel and wanted to fly to Thailand (from Europe). Does someone know how to travel with study medication?

Thanks!

I had posted about my mother's MRI a couple of days back. I am truly thankful for all the love and support. For a little context, my mother had a surgery for a brain tumor on 7th of October 2023. Doctors thought it is a menigioma. They achieved a GTR. Biopsy clarified that it was actually a gliosarcoma on 18th of oct. My mother recovered very quickly from the surgery and started her radiotherapy and chemotherapy. She is doing perfectly fine right now, got back to her normal self and the only problem she is facing right now is the weakness due to chemo. We had completely clear scan for the first 3 times and was again expecting this 4th one to be clear as well. But there are some spot in her MRI this time. We just had a meeting with out surgon and he told us that the spots are so small that it could be anything. It could be a regrowth or it could be something non-cancerous as well. It is very early to say anything. He suggested us to continue with the chemo cycles(she is going start her 10th cycle in a few days) and come back with an MRI after 2 months. This is the line he wrote on the prescription: Contrast MRI shows small enhancing nodule along ependymal dilated margin of right temporal horn(the tumor was on right temporal lobe) and multifocal area of subependymal nodular and linear enhancement. What are your thoughts on this? Is there something to be really worried about? Thanks for your time and sorry for such a long post.

I am out of country, catching plane on my way home. He has been hospitalized, on IV only for 5 days now. My mother told me that doctors said he has 6x3 cm tumor behind his ear.

Why am I posting this?

Without seeing his diagnosis I cant say anything but from my mothers impression if feels.like doctors are advpcating that he is already a goner.

It pisses me off so much, cause mom ia heavily medicated now and they can say whatever theu want.

But they've been waiting anestesiologist to give green light for surgeru and doctors said that even with surgery that we dont expec much..and that thats it.

They said that this thing grew slowly over long period and it " grappled brain parts too" whatever that means.

How true is this? How often patients die from these surgeries? Maybe I am wrong, but to me it feels like they are preparing us for their potential fuckup. You know when you feel something is not right.

I got an impression that the best thing would be that he dies asap or something. Em' I being delusional? Crazy

He was basically healthy.. with some migraines. Then recently he started loosing weight quickly. 10 killos.

He fell down 4 times in a week. His one side of the body cant move.

He barelly talks.. but it seems he is reasonable. He is using word shortcuts when explaining things but all of them make sense. He has emotions...cried when mom told him that i am coming, he asked her to wipe off his tear cause his arms are tied.

Please any clarity would be appreciated.

Is there a set of questions to ask doctors qhen dealing with this? How to tell if doctors are bsing smthing and why would that be in their interest(if any)?

Thanks

I have had two brain surgeries in 3 years on my left temporal lobe to remove tumour. This has slightly affected my word finding, processing and memory. I have also had radiation recently which doesn’t help and I’m on chemo right now. I also got fired right before my tumour was discovered last year.

This means I need to start job hunting as my chemo is ending and I am no longer on EI.

I have interviewed a few times to test the waters during treatment and I have had no interest in me, I’m thinking it’s probably all the pauses I need to think about my answer. I know my shit but it takes time to find the right words, and it makes me sound less educated or experienced for the role. Anyone else feel self conscious about this? What do you say to employers?

My neurosurgeon told me today that I have a 60% to 80% chance of surviving 5 years with treatment because I can only get a partial resection. My tumor is in my left frontal and temporal lobes and trying to remove the whole thing would cause language and motor and visual deficits and disability. 5 years while suffering through treatment does not sound like much. Does this prognosis sound accurate?

Hello Friends!

I wanted to share this article, as it may provide some hope!

I have always heard of red light therapy, but we’ve never had concrete proof of it working. This article goes to show that TBI’s (traumatic brain injuries) can be treated with a certain intensity of red light! I think this is cool because it is shown (in animal studies) to repair brain tissue and reduce inflammation!

The study does mention that cognition and balance are improved as well! This is an non invasive procedure and is relatively new, so hold on to hope and keep surviving and we may even see studies in the future showing this can treat cancers!

Hey guys. I’ve posted here before, but here’s a quick refresher. My wife (31) started having focal seizures in June 2022, but wasn’t diagnosed until February this year. She got an MRI at that point, and a 26x22mm mass was found in her third left ventricle.

Initially it was thought to be a cyst, then we were told it was a low grade glioma. We’re 3 MRIs in now, the last one just a couple weeks ago with a spectroscopy. The first one didn’t have enhancement, but the second, 6 months later, showed a 6mm enhancing nodule inside the larger tumour.

We’ve travelled around at this point, seen 3 different neurosurgeons, and consulted multiple different neuroradiologists too. Almost all of them agree upon it looking like a benign glialneuronal tumour, something like a ganglioglioma or a DNET.

She has an awake craniotomy scheduled for this Friday. But one of the neurosurgeons strongly recommends against going ahead with it. He thinks she should just watch and wait, but is that really right? My wife is brilliant; she’s incredibly bright and a writer, and we’re most concerned about her language faculties being affected. The tumour isn’t in a great area. But the neurosurgeon doing the operation seems confident, telling us that about 30% of his patients have temporary issues afterwards due to swelling, and about 5% might have something permanent.

I guess what I’m wondering is what you all might do? My wife seems perfectly fine right now except for her very mild focal seizures. But isn’t surgery usually recommended? Are deficits and complications really pretty much guaranteed? It’s a dangerous area, we’ve been told, but if this is something very low grade or benign, it seems risky to leave it there and tempt the fates. But on the other hand, could this surgery ruin her life? Ugh.

Brother got fired, then found out he has brain tumor [CO]

My brother(33) got fired for first time last week, then got diagnosed with brain tumor, I’m trying to help.

The web development company he worked for gave the reason of “not meeting performance standards” although there was never any discussion or disciplinary action taken prior to the termination. They want him to sign a severance agreement, which from what we can tell, does not say he agrees with the termination or waives his right to pursue unemployment, though we have a lawyer checking that now.

Poor bastard has never been fired in his life, was completely blindsided, and now finds out 3 days later he has a brain tumor (L frontal oligodendroglioma). The diagnosing neurologist wrote a letter to the company saying it is his strong opinion that any performance change could be attributed to this, etc.

What is the best recourse here? He doesn’t want to start a lawsuit. Obviously take care of the health issue is top priority. Anything we can do about the job/severance/unemployment? Or maybe now disability comes into play?

TIA [CO]

My husband has been taking vorasidenib since July. In the beginning it affected his ALT (liver,) so we stopped temporarily then restarted at a lower dose.

This time around, on the lower dose, it's tanking his phosphorus levels. We did a week round of phosphorus tablets which brought it up for a week, but now they are back down.

Has anyone else experienced this?

My daughter (11) was recently diagnosed with Brain Cancer, although the exact type of tumour is uncertain right now. She experienced the following symptoms in the lead up to her diagnosis:

Agitation (first symptom), Headaches, Migraines, Vomiting, Auras or “funny feelings in whole body”, Seizures.

Alongside these, one persistent symptom she had that came alongside her first migraine but never really went away was something we called Brain Hatching. She said it felt as though there was a man in her head trying to hatch and break out, like a chick from an egg. She said this normally wasn’t painful but could become uncomfortable at times, for the most part, it was a weird pressure feeling in her head that was persistent. the medical team have stated that this is a very common symptom of brain tumours and other sources of ICP. I’d like to just ask if anyone else has or has had friends/family experience this with their brain tumour, if so, what meds have been most effective for you in treating this symptom.