r/braincancer • u/El_Billy • 1d ago
Thoughts & experiences about low grade gliomas
Hey everyone,
First of all, I apologize because this must be one of those many many times you're going to read the same thing, so sorry again.
My wife (40) got diagnosed with a low grade glioma about 40 days ago, after having a couple of horrible seizures while we were on a trip. The neurosurgeon took a look at the MRI scan and told us that the tumor was in a pretty accessible area, on the right frontal lobe. She underwent surgery the day before yesterday. It took a bit less than 3 hours. The neurosurgeon told me that he was sure he removed everything, and when I asked about her prognosis, he responded that my wife "would live a really long life".
After that I was really calm, but I made the mistake of googling and asking chatgpt about their opinion. First thing I noticed was the 5-10 year life expectancy. Then something about grade 2 gliomas not being completely removable, and the inevitable mutation to grade 3 & 4, followed by cancer and dead. I lost the little sanity these last 40 days left me. I panicked, cried.
After regaining a bit of sense, I came upon subs like this one and r/lowgradegliomas (which seems a bit abandoned, but has nice comments to read still).
Can anyone share their opinion about this?
Thanks in advance for your replies.
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u/Totenkopf22 1d ago
First off, don't read anything on Google or Chatgbt, that info is outdated. Wait to talk to the oncologist who will have the pathology report and go over further treatment options.
The fact that the surgeon removed all of it is great news. My tumor is in the right front as well, but they could only remove 90%. My oncologist told me I have a long life ahead of me as I have a slow growing tumor. I am currently on Tibsovo which has started to shrink my remaining tumor. I also have quarterly MRIs.
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u/whatismyusername4 1d ago
I am R. Frontal - Grade 2 Oligo - and today is my 3 year anniversary of my first craniotomy. Like others have said - Google is not helpful. Brain cancer timelines have changed a lot over in recent years.
I imagine you’ll get pathology back soon, and that will really help guide the next steps. I suggest trying to find a Neuro-Oncologist because of the ever changing brain cancer space, a general oncologist will not be the best option to lead your wife’s care team.
This community is great. Keep us posted 🧠💪🏻
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u/Old_Criticism_6992 1d ago
I’m 30 with a grade 2 Oligodendroglioma IDH-mutant. And my doctors refuse to take the tumor out because it was 7cm, diffused, and in my frontal lobe. In my frontal lobe it’s super close to primary functions. They won’t give me a timeline because really there never is a timeline unless it’s really bad. They say I have a great prognosis especially being on the medication (voranigo) I am on. A lot of the older studies that google references are ones before younger people were getting diagnosed so google pulls the info from there. But medicine is ever evolving and changing. We did find out mine has been there at least 15 years if not 20.
The medication is shrinking it with no side effects! I am not on typical chemo (medication is still considered “chemo”) and my radiation doctor won’t even touch me with radiation until I’m at least 40. There are so many amazing stories out there from people who are living it presently or have lived it.
I will say there is never really a “remission” for brain cancer because it’s never fully gone, depending on what you do. So you need to define what remission looks like to you with reasonable expectations.
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u/DayanKnite 1d ago edited 1d ago
I'm 41, diagnosed with an Oligodendroglioma Grade 2 IDH-mutant (wow, there's so many of us here) in my right temporal lobe in March. After my second surgery, in April, my consultant said the plan for me is treatment and control, not cure. My tumor was growing at least 5 years, but as many as 10, before we found it. I know it was at least 5 years because I was ignoring 5 years of mild absence seizures, because I assumed it was some kind of work related stress.
While my consultant thinks it might start growing again in about 5ish years, that just means we start treatment again when it does. As it stands I'm getting radiotherapy now, and will start chemo (PCV) after. So even if it does grow back, I'll have had it maybe 15 years by then, and it'll just mean round 2.
When I'm up to it I might start meeting with other patients/survivors, but I'm only getting my information from Doctors, or other people who've gone through it, not google or chat gpt.
AI only knows how to sound correct, not actually be correct. Just last week google's AI was telling me a line from Three Amigos was actually from A League of Their Own, which I know to be false I've seen both films enough, and I'm pretty sure it picked the second film because I'd looked up something about that film a couple weeks earlier. AI is extremely confident in it's ignorance.
*edit to add, they're always working on new treatments. My brother keeps following the research on proton treatment, I think he thinks it'll be my miracle cure, and who knows, it may as yet be.
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u/LawTiny311 1d ago
35 yo grade 2 idh-1 mutant oligodendroglioma here. I was just diagnosed 2 months ago, and am about 3 weeks post a craniotomy. I had a left frontal lesion. I agree that a lot of the stats seem outdated- but everyone is different. I’m planning on starting voranigo next week.
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u/MusclesNuclear 1d ago
If we aren't talking wt gmb or dipg/dmg all stats are bunk. Tons of long termers (even astro 3) are pushing 15-20 years.
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u/laurenboon3 1d ago
I feel you with this! Grade 2 Oli or Astro have a margin difference when it comes to prognosis with Oli being slightly more favourable. Theres loads of groups on Facebook with long term survivors for both, for example, i have a grade 2 Astro and the Astrocytoma Adults page has been really encouraging for me! We are all here for you both x
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u/Electrical-Egg-2319 1d ago edited 1d ago
Sorry this happened to you, I was diagnosed recently too and went through all stages of grief, thinking my life is ending. Surgery, which is the biggest step, is already done and with the great result, which places your wife in one of the best situations possible, only 30-40% of gliomas can be fully (macroscopically) removable iirc so this is really great start. Fingers crossed the pathology result will come back best possible.
The prognosis google gives are super outdated, 10 years ago the classification of those tumors was totally different and it was mixing the less and more aggressive ones a lot, that’s why the numbers are so low. The best thing to do is to trust your doctor opinion, 20+ years prognosis are not uncommon anymore, and total resection ones, like your wife’s, have the best outcomes.
All the best to you, it gets better after initial shock!
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u/CheapAssociate9494 1d ago edited 1d ago
Hi friend. I had a low grade glioma removed earlier this year. Ended up being a ganglioglioma.
It's very important to do research, I applaud you for that. I do want you to know that chatgpt is essentially a wildly complex autocomplete/predictive text system that is trained on unfathomable amounts of data. Chat gpt hallucinates and makes shit up CONSTANTLY.
Keep researching, keep learning, but always ask gpt for sources (which it often makes up by giving you broken links lol). It's also very important to run that information you learn through your doctors and surgeon, so they can tell you why each piece of information does or does not apply to your situation... Though I do think it's slightly uncool of your wife's surgeon to say that before pathology comes back. In my understanding nothing is a guarantee until they look at a sample of the tumor under a microscope.
I've been there. It sucks. Frantically researching and learning everything I can about this weird thing happening to me. I wish I could give you a hug. 🫂 It's terrifying. Hang in there. ♥️
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u/MrWicked 1d ago
I'm 33, diagnosed with an Oligodendroglioma Grade 2 IDH-mutant in my right temporal lobe in 2019. After my surgery, my oncologist said to avoid any rad or chemo until the time is right. Now it just started to grow again, so I'll prepare for a 2nd surgery soon.
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u/Traditional_Yam3853 20h ago
Hi OP,
It sounds like your wife has the better end of the shitty stick (if that's a thing!)
Very similar situation...I (38f) was diagnosed with a G2 Astrocytoma IDH mutation 5 years ago after a handful of seizures. It was totally resected and my treatment plan was to watch and wait post op with quarterly scans. My NS believes it may have been there at least 10 years prior. As many others have mentioned prognosis' are outdated and treatments are changing all the time. I had regrowth back in Dec and was started on Vorasidenib which has kept things stable for now! I still have the option of chemo/radio further down the line if need be.
I wish your wife (and yourself) the best of luck on this journey! Its not a linear one, but not one you have to be on by yourselves. This sub has helped me massively.
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u/ChipmunkKind2193 1d ago edited 1d ago
Dejavu of my journey. Husband diagnosed with Low Grade Glioma in Nov 2024. Pathology took 7 weeks which resulted in “Oligodendroglioma WHO Grade 2, IDH-mutant 1p/19q codeletion”… like ok, what? Lol. Then we are told we got best case scenario… also like ok, what? lol. It’s been a mind fuck journey. I empathize with you. Join on Facebook “Oligodendroglioma/low grade glioma warriors” and “Oligodendroglioma/Brain Tumor Awareness”. You’ll immediately find 20+ year survivors. A fair warning, it brings comfort knowing life lived by others. But it also brings some slaps of reality. An individual often comments in this Reddit sub “accept the diagnosis and fuck the prognosis” and I love that. They have absolutely no idea to determine a prognosis for these gliomas as every person is so unique. By the sounds of it, your wife has had an awesome start to her journey (subtract the traumatic seizures). Take care fellow spouse of a glioma warrior!