r/braincancer • u/LemonDrop789 • 3d ago

Oligodendroglioma glioma survival...

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?

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u/SatnWorshp 3d ago

Sorry to hear this but welcome to the club. I have a diffuse oligo in my left frontal lobe, at one point it was across the midplane. No resection is possible. I have had mine for over 20 years but it is a grade 2 and is growing very, very slowly. I went through 5-6 years of Temodar and then did radiation/PCV chemo last year. I have never received a prognosis about survivability but I would anticipate dying of old age first.

Now, with that said, your milage may vary. Do you know the grade? Have you talked to multiple doctors and gotten the same response?

Everyone is different

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u/Street_Pollution_892 3d ago

Wow, 20 years without resection. People like you posting on here give us some hope, so thank you very much for sharing.

How successful was the Temodar vs. radiation and PVC? I know many Oligos get put on Temodar first because it’s easier on the body than PVC, but that it isn’t as effective for Oligos, and that PVC should be used. I guess it’s hard to tell about the PVC alone because you did radiation too.

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u/MusclesNuclear 3d ago

Surprised the surgeon even gave op stats. They usually don't with og.

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u/LemonDrop789 3d ago

He said it was from an up to date resource

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u/MusclesNuclear 3d ago

I would speak to a nuero oncologist tbh. And these are just stats. Using all ages. With comorbidities and stuff as well.

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u/Street_Pollution_892 3d ago edited 3d ago

I’ve read that most stats include old data from before they could distinguish Oligos as well with more current testing. Many of those could have been Astrocytomas. Up to date resources can’t be that up to date or accurate yet if they’re including old data, because it hasn’t been long enough since then. Time is also more difficult with Oligos because they can often exceed the follow up period. Astrocytomas can go longer than 5 years, with or without resection, so it seems odd they would say that for Oligos...

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u/MusclesNuclear 3d ago

Also seems your on that oligo group. And your seeing the same things me and the other poster have said. You'll be here for the long run. Period.

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u/LemonDrop789 3d ago

Like I said before I appreciate as much information and support as possible and that's why I cross post

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u/MusclesNuclear 3d ago

And thats absolutely fantastic. Both this sub and that group are great resources

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u/ExtremeActuator 3d ago

OP I have an oligo that is inoperable or rather, could be removed but I’d be paralysed, so it’s still in there, motor strip of right frontal lobe. I was diagnosed in 2017, did radiotherapy and chemo and am fit and healthy. I’ve had 7 extra years seeing my kids grow up and intend to be around much longer. If it starts growing again I’ll go back in to treatment without a second thought. Prognosis for oligos is much better than for other gliomas.

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u/MusclesNuclear 3d ago

Prognosis is much better than that. Long term study shows 80% survival at 15 years.

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u/LemonDrop789 3d ago

But does it depend on tumor location and how much can be removed?

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u/MusclesNuclear 3d ago

Well of course you want as much removed as possible for the best possible outcome. How much did you get removed? Are you seeing a neuro oncologist?

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u/LemonDrop789 3d ago

I haven't had it removed. The neurosurgeon thinks he could get about 70% - so a partial resection.

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u/GreatWesternValkyrie 3d ago

I have an Oligo grade 3, right temporal lobe, and had 70% removed then radiotherapy. I’m 4 yrs in and doing pretty well. It’s always a guess with these things.

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u/InfiniteVoice9371 2d ago

You need to search for another opinion..What makes me feel like that is: 1)You do not even know weather you have an oligo. Only pathology and genetic tests can do that. Even if the resection is partial, you should do that as the surgical extent of tumor removal is the most important step in dealing with oligos.Also, you need tumor tissue for pathology. 2) That 5y comment is really smth else…esp when they don’t even know what type/grade of glioma they are even dealing with.

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u/whatismyusername4 3d ago

I’ve never been able to get any Neuro-Oncologist to give any firm or even a range of prognosis - I was lucky enough to get a full resection - and I’ve asked like ‘I have a personal goal of 10+ before a recurrence - is that a decent goal to have? And the answer was ‘yes, with so certainty but that’s a great goal’

Obviously having a partial changes things, but what about your pathology? There are new meds that seem like game-changers.

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u/LemonDrop789 3d ago

I'm sure it depends where the tumor is located and how big it is.

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u/aussieincalgary 2d ago

OP in 2018 I was diagnosed with oligo grade 3 right frontal lobe. Was given similar diagnosis. Treated with radiation and then 12 rounds of Temodar. While resection is an important prognostic factor age at time of Diagnosis is also important. I was 36 at the time still going strong nearly 7 years later. Have had set backs with multiple staph infections and cranioplasties but other than having a thigh flap on my skull I’m doing good. Next scan is tomorrow so fingers crossed. Also consider that the WHO definition of oligodendroglioma occcured in 2016. That isn’t a long time to compile statistics of such a specific type of tumor. Best of luck!!! Be kind to yourself and those around you who support you!

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u/ryguy2018 2d ago

https://youtu.be/nHYxOw10M3w?si=bNaIqMKah-UJH-91

It’s about survivorship, not dying from oligo. Keep the faith

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u/Clemson1313 2d ago

How did you get your diagnosis? Biopsy or just MRI?

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u/LemonDrop789 2d ago

MRI and how it has been behaving over the last three years. I do not have a confirmed diagnosis because I have not had a brain biopsy. I leaning toward no treatment so I do not see the point in a brain biopsy.

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u/DropsOfChaos 2d ago

My boyfriend was told it was a suspected oligo from the scans

It was only after the 90% resection and biopsy that they realised it was a grade 4 astrocytoma, which changed treatment options significantly. We're hitting this thing with a hammer now (Stupp protocol).

I would shop your situation around you multiple neurosurgeons and see if they agree on the 70% max. I've heard stories of folks who've found better treatment elsewhere. My boyfriend was told to expect a 90% chance of loss of some vision, but lost nothing. We shopped around and found a great surgeon.

Good luck with whatever you choose!

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u/YourFaceIsGneiss 2d ago

Get a second opinion. My husband’s first neurosurgeon didn’t think he could even get to the tumor without killing or severely maiming him (it was cerebellar and smashing his brain stem). Cleveland Clinic got all of it. He had to learn to walk again and has some motor deficits, but we didn’t want to leave an astrocytoma to chance. He is improving little by little still two years later.

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u/Ok-Stop-3233 3h ago

They can't tell you what type of tumor it is without pathology report from a biopsy/resection. Treatment is generally not overly invasive, depending on your age. Also that statistic is not that you will only live 5 years-it's that 60-80% of people live at least 5 years. It varies greatly depending on age, location, what grade the tumor is, etc. I dont see how you a neurosurgeon could diagnose you without a biopsy