r/braincancer • u/Beneficial_Ad_1329 • 5d ago
Recently diagnosed with brain cancer
He redditors, i was recently diagnosed with a braintumor around 3x5 cm on the right hand side of my brain. I feel very frustrated that i can't get any answers from the doctors about my survival rate yet or worse risk of getting paralyzed on my left side of the body. i understand that it takes time and they have to wait for the results from the biopsi that was taken last friday. But can anyone give me something? I'm 28 years old and feel free to ask any questions, and i will try to answer as best as i can.
EDIT: Not my scan but looks awfully close to my pictures. stupid me didn't take a picture of the scan. maybe i can find it somewhere in my online journals
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u/Brandisco 5d ago
A huge variable right now is the type of tumor, and that will be shown in the biopsy. If you’re lucky you’ll have a grade 2 or lower since you’re young. That’ll dramatically increase your prognosis. However if you have a monster, like glioblastoma IDH wild type methylated (which I have), things are WAAAAaaay less positive. You can google survival rates for each of these to see what the potential is. But in general it could be 6-18 months (in the worst case) or you could go on for the rest of your life with no real impact.
Naturally I hope you have the “no impact” version. Fuck cancer. I hate this shit and wouldn’t wish it on anyone. Best of luck. And feel free to DM me if you have other questions.
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u/Beneficial_Ad_1329 5d ago edited 5d ago
Thanks, well i think that the fast result the doc gave me was a grade 3 gliomtumor. I'm neither afraid or in chock eventhough it was 2 weeks ago that they found it. I hope you're doing well
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u/ExtremeActuator 4d ago
If you do google survival rates (unwise) remember that the most common age to be diagnosed with a brain tumour is in your 90s and that very much skews the averages presented.
You are in the absolute worst stage right now, the not knowing. No matter how good or bad the biopsy results, at least the you can make plans, start treatment and keep putting one foot in front of the other.
Good luck.
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u/drinkinsweettea 4d ago
I read I had AT best 5% survival rate to reach 5 years in the best of circumstances. I then read I had maybe less than 1% to reach 10 years. I was diagnosed with Glioblastoma in 2013 at 23 years old. Right parital full resection size of a pea named her Patrice.
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u/Accurate_Reality_618 5d ago
Get support. The next few days will be very difficult emotionally and with anxiety, but you will get through it. Stay with your family so you can get help quickly in case of an epileptic seizure. This happened to my mother, but because we were all there and the relatives were close, she survived. That's how they found out she had brain cancer. There are many new treatments, and many, even at the age of 50, may live for years. What doctors say is not always certain.
Good luck
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u/zbzbhtslm 5d ago
It really really really depends on the biopsy results. The difference in odds and treatment options between tumor types is huge. A lot they can't know without genetic typing. It is beyond stressful waiting for the biopsy results. But being young helps your odds. All I can suggest right now is get as much support as you can (friends, family, therapist) and try not to think about worst case scenarios.
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u/OutlanderLover74 4d ago
I’ve never been given a prognosis. They really don’t know how each individual will do. Early on, I read I had a prognosis of 12 years. It’s been 17 so far, so they can guess but don’t know. Once you know what you’re dealing with, that will give you a better idea.
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u/whygamoralad 4d ago
Can I be cheeky and ask if/ how many craniotomies you had? Any chemo or radio? What type and your age?
I'm awaiting my craniotomy but know a guy in work who's gone 13 years since diagnosis two craniotomies, radio and chemo after the second and has had no evidence of the glioma for 7 years now.
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u/OutlanderLover74 4d ago
Ask anything. I’ve had two craniotomies & am now on Vorasidenib. I was 33 when diagnosed & 50 now. Mine is a Grade 2 Oligo, but there’s been some enhancement since starting Vora. It has been decreasing, though. It’s been seven years between each recurrence.
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u/whygamoralad 4d ago
Thanks I'm 32 hoping it's oligo too. I'm hoping my timeline looks similar to yours :).
I've asked to preserve as much function as possible this time and then can always have a second craniotomy if it grows. They also have told me I can go on Vorasidenib too if there is residual tumour which it sounds like there will be.
I've just finished training as a sonographer (ultrasound tech) which requires a lot of fine motor movements and have a young son so want to keep function as much as possible.
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u/OutlanderLover74 4d ago
That makes complete sense. They usually map your brain so that they cause the least damage as possible. Vora is such a great new medication! I’m grateful to have been here long enough to have it!
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u/Accomplished_Lie_162 4d ago
I was recently diagnosed with a grade two Astrocytoma at 24. It was located in my motor cortex primarily effecting my right leg. I went through a craniotomy in January and have been on the road to recovery. Resection was probably >65%. Don’t worry about the survivor rate just be happy that it was diagnosed. We have modern medicines and new therapies for brain tumors. Im still affected with muscle weakness and muscle tone but it doesn’t change my mentally when it comes to living my life to the fullest.
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u/PerceptionMotor7173 4d ago
Well done to you for your bravery, the unknown really is hard but you will get the results soon and will be known. Until then - patience and give yourself some love, you are doing the best possible with the resources you have in a difficult situations
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u/simply_susie 4d ago
Without the results of your Biopsy any Dr that will give you a survival rate isn’t a Dr you want on your team, there are so many variables that no Dr can determine anything like that. My 26 y/o son was just diagnosed with Astrocytoma grade 2 with an IDH/1 mutation and the waiting on his results was pure hell. They were able to start him on Voranigo 2 months ago and he’s doing good on it. Good luck to you friend. Get some support anywhere you can. Keep us updated on how you’re doing 😊
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u/ncomfortable2 4d ago
My husband was diagnosed a little over a year ago about a month after his 25th birthday. We have seen around a dozen doctors in the field, and only one has given us a “prognosis” that of which is grim. Every other doctor has said that they can’t possibly tell us what his prognosis is in good conscience because of the rapid improvements in the field. The original doctor that diagnosed him told us to expect him to “live a normal life”. Our normal is absolutely different after the diagnosis, surgery, and post op seizures- but we are in the clear thus far. Praying we stay on this track and hoping the best for you! Please reach out if you have questions. P.S. take lots of pictures of scans, and record your appointments! They are great to reference back to when needed. Write down all of your questions so you don’t forget them when the time comes!
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u/Electrical-Egg-2319 4d ago
I’m in very similar situation and it’s the second time I see this „expect a normal life” in your comments and it gives me so much hope, even though I know it’s not super probable in current medicine state… anyway, thanks, I was never given a prognosis but my doctor seemed weirdly optimistic about no recurrence in the future, good to see maybe he’s not the only one seeing a good future for us
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u/Rough_Glass6402 4d ago
A dozen MD’s ? They can’t give a prognosis worth a shit until it’s biopsied. Did anyone give a referral to a neurosurgeon? Or a Neuro-Oncologist? Those are THE only 2 MD’s that I’d trust. Don’t see a Nurse Practitioner. You need an MD. I say this as a career RN also who had a really large temporal tumor, that was removed. They may watch its growth rate for 6 months or so… but you need a long term plan.
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u/ncomfortable2 3d ago
I refer to my husbands neuro oncologist(s) and neuro surgeon (+ 3 others we “interviewed”) as doctors. Every diagnosis he was given before surgery was correct and confirmed by pathology after a gross total resection. We have a plan 😊
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u/cleohnnah 4d ago
hey, I was also diagnosed with a 3 x 5 brain tumor back in February 2025, but on the right side of my head it looks pretty similar to that picture. feel free to message me with any questions or if you just want to talk, it seems like we are in similar situations.
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u/Rough_Glass6402 4d ago
Mine was about the same size. Hell yes he needs a Neurosurgeon and a Neuro Oncologist. Period. Full Stop. Good luck to you too brother. (Or sister)
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u/Few-Recover8159 5d ago
See if you can get your scans on a cd from where you got your scan done - say you want a second opinion and need the scans- if you need help with this message me - I have brain cancer- then at least you will have your pictures of your scans. They might even put it on a usb for you- depending where you got scan done you might have to make an account too to see them online too
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u/Beneficial_Ad_1329 5d ago
i have the cd, but no cd tray lol
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u/Few-Recover8159 5d ago
DAMMIT!! that happened to me too haha 🤣
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u/Few-Recover8159 5d ago
Your anxiety is valid tho and we are here for you <3 I’m here for you!!!!!!!!!!
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u/bendyhenry 4d ago
Hey bud, i was in your situation. I was diagnosed with two inoperable brain tumors at the age of 21. I had no idea what they were at the time and I remember just wanting to know what it was so I could take it on so I fully understand how you’re feeling. Turns out my tumors are very receptive to treatment based on the type of cancer was I was only in treatment for seven months I’m now 27 living fully healthy life. Obviously things are different now and have had to adjust to a new normal but after all, I am healthy and I hope you get a good prognosis. Just trying to give you another perspective from the grim side of cancer
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u/GreatWesternValkyrie 4d ago
Really sorry to hear of your diagnosis. When you have a bit more info about your tumour, come back and we’ll all be able to help. But just try your best to stay as calm as you can, and try not to overthink things.
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u/GBM-caregiver 4d ago
Al Musella Brain Tumor Foundation: https://virtualtrials.org has a book that https://endbraincancer.org will send you for free. I wish I had it at the beginning of my husband’s journey through this disease. Read Andrew’s approach: https://braintumourresearch.org/blogs/in-hope/andrew-scarborough?srsltid=AfmBOor6dZkIq9XPNyB7VyfYaMipNctp5iMR7p_7K4GVaEseTo1RMQC4 He went completely rogue on the main stream and is a long term survivor. He is on extreme ketogenic diet. We were completely evidence-based standard of care with the best hospitals in the world in Boston + some newer approaches that I managed to get but the result was statistical average. I encourage you to read from above sources and educate yourself as much as you can REGARDLESS of the type of tumor. It is sufficiently large to throw all tools you can to create as hostile environment for it as possible.
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u/Rough_Glass6402 4d ago
Looks like my scan. Chicken egg size on right temporal lobe. They didn’t even biopsy it. Went in after watching its growth rate for 6 months or so. Did a total right lobe resection (removal) 18% of my brain put in a jar for pathology. Grade 2 Astro here. Still working (RN) and actually able to be ok most days on Voranigo. Some wild neuro and visual changes for a few months…wild mood swings now. Please, get mental health help if you need. A psychiatrist for med management if you need. Don’t see a mental health nurse practitioner. You need an MD so they fully understand it. I work in Mental Health now. Meds & talk-therapy can and do help with mood disorders.
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u/Xjdeep 2d ago
I had to corner the surgeon in the hallway and straight up ask him how long he had. He didn't want to answer. I told him I needed to prepare for the future, and he just said it won't be a long one. Left me standing there in shock. Chased him to the elevator and asked him what he meant. He said that in his opinion, he wouldn't make it 6 months. I'll be dammed if it wasn't 6 months to the day.
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u/mikeMend22 1d ago
Like everyone said no doctor would or could treat without the biopsy results they wouldn’t know what they’re treating there’s a lot of cancers!! Be patient, positive (could be benign) & not need treatment no way to know!!
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u/No-Significance-4924 5d ago
I say this with love: No, not without the results of the biopsy. Even then, it’s not really going to be able to account for recent advances such as vorasidenib that may change your prognosis. And as a 28 year old, statistically you should do better than the average prognosis. Even if you had the answer you’re looking for, this would still be extremely scary and uncertain. My advice to you would be to 1) try to come to terms with the uncertainty of your situation (consider therapy), and 2) try to take it one day at a time and prioritize the people you love and the things that bring you joy.