Oligodendroglioma

Both halves of the name are gene results. The same chromosome loss that names this tumor is the reason one chemotherapy works better on it. And that is why the test is worth waiting for.

The short version

Both halves of this tumor's name are gene results, not opinions. To be called an oligodendroglioma, a tumor has to have two specific changes, and a lab has to find both. That is why the wait for results matters here more than almost anywhere else. The second of those changes is also what tells your team this tumor is unusually likely to respond to chemotherapy. The name and the treatment come out of the same biological fact. Seizures are the usual way it announces itself, and there are only two grades of it.

What is an oligodendroglioma?

Nerve cells carry signals. Around them sit helper cells, and one kind of helper cell wraps nerve fibers in a fatty coat that lets signals travel faster. That cell is called an oligodendrocyte. An oligodendroglioma is a tumor made of cells that look like those.

It is one kind of glioma. It belongs to the group called the adult-typeadult-type: A group of gliomas sorted by their biology. Not by the age of the person who has them. Adults usually have one of these. And children sometimes do too. Seeing it on your report is not a filing mistake. See the glossary diffuse gliomas, which has three names in it. The other two are astrocytoma and glioblastoma.

Grade 2 tumors of this kind sit under the low-grade glioma heading, and grade 3 ones under high-grade glioma. Those are groupings rather than diagnoses, and you may meet either word before you meet your real one.

The two results that make the name

A tumor is only an oligodendroglioma if the lab finds both of these in the tumor cells:

• An IDH gene change. This is the first fork in the road for this whole family of tumors.
• 1p/19q co-deletion. Chromosomes come in pairs, and each one has a short arm and a long arm. Here the short arm of chromosome 1 and the long arm of chromosome 19 are both missing, together.

One of the two is not enough. A tumor with an IDHIDH gene change: A small change in a tumor's IDH gene. It is the first thing your team looks at when naming an adult glioma, and it can affect which treatments are offered. Your pathology report says whether your tumor has it. See the glossary change but no 1p/19q co-deletion1p/19q co-deletion: Two pieces of two chromosomes are gone. They are gone from the tumor cells. A glioma can have this change. If it has an IDH gene change too, it is called an oligodendroglioma. See the glossary is an astrocytoma, and it is treated differently. This is worth knowing because it explains a wait that can feel like nothing is happening.

The microscope can be overruled, and often is

Under a microscope these cells have a look pathologists recognize. The cells can appear to sit in little round spaces, and the small blood vessels branch in a pattern with a name of its own.

None of that settles it. A tumor that looks like a textbook oligodendroglioma under the microscope is not one if 1p/19q is intact. The gene results decide, and the appearance does not. If your team seemed sure at first and then became careful about the name, this is usually why.

Is it cancer? What does its grade mean?

Yes. An oligodendroglioma is cancer. It is a malignant tumor, and it is a diffuse gliomadiffuse glioma: A glioma whose cells spread out into the brain around it instead of staying in one lump. That is why the edge on a scan is not a clean line. See the glossary, which means its cells spread into the normal brain around it rather than sitting in a lump with a clean edge.

That has one consequence worth saying plainly. An operation cannot get all of it, however well it goes. Some of it is already mixed in with brain that has to stay. With today's treatments, a grade 2 tumor of this kind is not curable.

That is true at grade 3 as well. It is a hard sentence and it is not the whole picture. Not curable is not the same as not treatable. This is a tumor people are treated for over years, and the treatments do real work.

There is no grade 1 and no grade 4

Most brain tumors are graded from 1 to 4. This one only comes in grade 2 and grade 3. There is no such thing as a grade 1 oligodendroglioma, and there is no oligodendroglioma that corresponds to grade 4.

That last part matters for a specific reader. On the astrocytoma page there is a gene result called CDKN2A/BCDKN2A/B homozygous deletion: Both copies of two genes that put the brakes on cell division are missing. The two are CDKN2A and CDKN2B. See the glossary which, when both copies are missing, sets an astrocytoma to grade 4 on its own. In an oligodendroglioma the same result can point to a grade 3 tumor that is moving faster. It does not create a grade 4, because there is no grade 4 here to create.

What the grade describes

The grade describes how the cells are behaving, not how long anyone has.

• Grade 2. The blood vessels branch in the usual pattern for this tumor, few cells are dividing, and the marker that counts dividing cells is low.
• Grade 3. New blood vessels are being built, the cells are packed more tightly, they look more abnormal, and many more of them are dividing.

Grade 3 tumors tend to arrive faster and with more obvious problems than grade 2 ones. Both grades are treated, and with the same kinds of treatment. What changes is usually the order and how soon they start.

Where does it grow, and why does it cause these symptoms?

This tumor has a favorite address. It turns up most often in the frontal lobefrontal lobe: The part of the brain above and behind your forehead. There are two, one on each side, and they are the largest of the brain's four lobes. See the glossary, and it tends to sit in and just under the cortex, which is the folded outer layer of the brain where the electrical activity happens.

Most people are told what they have long before anyone explains what it is doing. These are the ways a tumor in the brain causes symptoms. They overlap, and most people have more than one going on at once. Which of them apply to you depends on what your tumor is and where it sits.

It takes up room. The skull is a closed box. It cannot stretch. So anything new inside it has to push on something. The tumor and any swelling around it together take up space and press on nearby parts of the brain.

It can make the brain around it swell. This one surprises people, and it is worth understanding. Fluid builds up in the brain tissue near the tumor. That swelling plays a major part in deciding what symptoms you get. Some of what you are feeling may not be the tumor itself. It may be the swelling around it. That is why medicines that bring swelling down can change how somebody feels, without the tumor being any different than it was.

Pressure can build up inside the head. When the pressure inside the skull rises, there is a pattern doctors watch for: headaches that are worse in the morning, feeling sick to your stomach and throwing up, odd eye movements, seizures, and being confused or very drowsy. Not everybody with raised pressure has all of it, and some people have almost none of it. If this pattern is new for you, it is worth a phone call rather than a wait. If you have a shunt, it means getting help right away.

It can set off seizures. A tumor and the irritated brain around it can upset the normal electrical activity of that part of the brain. For some people a seizure is the first sign that anything is wrong.

It can block the flow of fluid. The brain makes a fluid that circulates around it and drains away. A tumor sitting in the wrong place can block that flow, so the fluid backs up and the pressure goes up. This is more likely with tumors near the narrow channels the fluid passes through. It can be treated, and the usual treatment is a shunt. That is a thin tube that carries the fluid to another part of the body, where it is absorbed. It is the word your team will use. Shunts and hydrocephalus covers what having one is like, and the signs it has stopped working.

Why your symptoms are the ones you have

The short rule: the symptom tells you where, the scan tells you what. A tumor disturbs whatever job the brain does in that spot, so where it sits decides what you notice.

There is one exception, and it is the fluid. When the flow is blocked, what you notice is the pressure rather than the spot: headaches worse in the morning, throwing up, double vision, and feeling unsteady. Those signs are much the same wherever the blockage sits, so they tell you the pressure is up, not where the tumor is. If that is your pattern, the part above called It can block the flow of fluid is the one about you, and it says what can be done. If the pattern is new, the phone call above applies.

• Front of the brain. Personality, behavior, planning, motivation, and on one side, producing speech.
• Side of the brain, near the temple. Seizures, memory, and understanding what people say.
• Upper back part of the brain. Sensation, knowing where your body is in space, reading, writing and arithmetic.
• Back of the brain. Vision, and losing part of your field of view.
• Cerebellum, low at the back. Balance, coordination and walking.
• Brainstem. Double vision, facial weakness, and trouble swallowing.
• Deep in the middle, near the spaces the fluid runs through. A tumor here can block the flow, so what you notice is often the pressure rising rather than anything that points to the spot.
• The floor of the skull, below and behind the ear. Hearing, balance, and the nerves to the face. So hearing loss or ringing in one ear, dizziness, and numbness or weakness down one side of the face. Your team may call the whole floor of the skull the skull base. This spot is one part of it.
• Behind the eyes, at the base of the brain. Vision, and the hormones that set energy, weight, thirst and periods. In a child, growth and puberty too. Side vision is what usually goes first, so things start disappearing at the edge. Your team may call this the pituitary or the sellar region.

If something on this list matches what you have noticed, it is worth writing down and taking to your next appointment. Your team can tell you whether it fits where your tumor actually is.

This list is about what the place explains. The other half of the question is what the place changes: whether an operation is offered, how much of it can come out, and when the place makes something urgent on its own. Where your tumor is, and what that changes is that half.

That location explains most of what this tumor does. It is sitting in the part of the brain that generates seizures, which is why seizures are so common here. When it is in the frontal lobe it can also change thinking and personality before it changes anything a scan would call dramatic.

One thing it usually does not do early is cause much swelling. Heavy swelling and bleeding around the tumor are uncommon with this one, so the symptoms that come from pressure inside the head are less prominent early than they are with a faster tumor.

What symptoms does it cause?

Seizures are the hallmark. They are the commonest first sign, and for many people a seizure is the event that led to the scan that found the tumor. If that is your story, you are in the ordinary pattern for this diagnosis rather than an unusual one.

Other things people notice:

• Headache that keeps going or gets worse.
• Weakness, numbness, or trouble with speech.
• Loss of part of the field of vision.
• Changes in thinking, concentration or personality, especially with a frontal lobe tumor.
• Feeling sick to your stomach and throwing up, if pressure inside the head has risen.

When to call for help right now

Some things should not wait for the next appointment.

Call an ambulance for any of these. Call 911, or your local emergency number:

• A first ever seizure.
• A seizure that lasts more than five minutes.
• One seizure right after another, with no waking up in between.
• Someone who cannot be woken.
• Trouble breathing, or someone who seems to be choking.
• Suddenly not being able to speak, move one side, or see.

A seizure like the ones you usually have, that stops on its own, is not an ambulance call. What to do during a seizure draws the line.

Call your team the same day for any of these:

• A headache much worse than usual, or one that wakes you from sleep.
• Throwing up again and again.
• New weakness in the face, an arm or a leg.
• New trouble speaking, or understanding what people say.
• New confusion.
• Sleeping much more than being awake.
• A sudden change in your vision.

If you are having chemotherapy, a fever is its own rule. It means calling your team right away, at any hour, not waiting for the morning. An infection during chemotherapy can get dangerous fast, and it is treatable when it is caught early. The fever rule explains why, and what number your team will give you.

In the weeks after brain surgery, a fever is its own rule too, especially with a stiff neck or a bad headache. What comes after a craniotomy has the rest of that list.

If you have a shunt, the signs it has stopped working are their own rule. For you, everything on the same-day list above is a right-away call instead, and so are a few other signs. Get help right away, at any hour: call your team, or go to the emergency department. Signs a shunt is not working has the full list.

If you are not sure whether to call, call. Nobody on that team minds a phone call that turns out to be nothing.

Same day means today, not the next clinic appointment. Ask your team now for the after-hours number, and put it somewhere you will find it at two in the morning rather than somewhere sensible.

What to do during a seizure has the step-by-step, and getting help now is the short version to keep on a phone.

How do doctors find out it is this?

A scan first, then a piece of the tumor, then gene tests on that piece.

• An MRI scan shows where it is and something about how it is behaving.
• A CT scan often shows calcification. Calcification is calcium that has built up inside the tumor. It shows up on a CT scan as bright specks or streaks, and it is common enough in this tumor to be a real clue. It is not something you did, it is not a stone, and it does not need removing on its own. When it forms a certain pattern, a radiologistradiologist: A doctor trained to read scans and write down what they show. The report goes to the doctor who asked for the scan, who then tells you. One who specializes in the brain and spine is called a neuroradiologist. See the glossary will often suspect this tumor before anyone has looked at tissue.
• A tissue sample, taken at an operation or by a needle biopsystereotactic biopsy: Taking a small sample through a narrow opening in the skull, guided by a scan. A full opening is not made. It is used when the area to be sampled is hard or risky to reach. See the glossary. A scan can suggest this tumor. It cannot name it.
• Gene tests on that tissue. These are what turn a suspicion into the diagnosis, and they are the part that takes the longest. Waiting for results explains why the answer arrives in layers.

How tissue is taken goes through both ways of getting that sample.

What do the words on my report mean?

The rules for naming brain tumors changed in 2021. If your paperwork was written before that, some of its words are no longer used.

This matters more than it sounds. People read an old report next to a new one, see two different names, and think somebody made a mistake. Usually nobody did. The tumor did not change. The way doctors write it down changed.

Three changes affect almost every report.

• Roman numeral grades, such as grade II or grade IV on an older report. These are now written with ordinary numbers instead: grade 2, grade 4. Nothing about the grade itself changed. Only the way of writing it did.
• Gene results are now part of the name. Older reports named a tumor mostly by how the cells looked. A name written now usually has a gene result built into it. That is why a newer report can look longer and more technical than an older one about the same tumor. You may also see NOSNOS: Short for "not otherwise specified". It means the gene tests needed to name the tumor fully were not done or could not be done. Ask your team whether they can be. See the glossary or NECNEC: Short for "not elsewhere classified". The tests were done, but the results do not match any named tumor type. Ask your team what it means for your plan. See the glossary written next to your diagnosis. These say something about the testing, not about how serious the tumor is. NOS means the tests needed to be more exact were not available. NEC means testing was done, but the results did not fit any defined group neatly.

Seeing an older name on your own report does not mean it was wrong. It means it was written under the old rules. If you are holding an old report and a new one and they do not match, that is a good thing to take to your team and ask about.

The results that matter most on this particular report:

• 1p/19q co-deleted. Present, and required. This is half the diagnosis.
• IDH-mutant. Present, and required. This is the other half.
• ATRXATRX: A gene checked on the pathology report. The tumor cells may or may not still make the ATRX protein. Which one it is helps sort a glioma into one type or another. See the glossary retained. On an astrocytoma report this protein is usually lost. Here it is usually kept, so "retained" is a point in favor of this diagnosis rather than a problem.
• TERT promoter mutationTERT promoter mutation: A change in the switch that controls the TERT gene. It keeps tumor cells from aging out. It is one of several findings your team reads together to name the tumor. See the glossary. Present in most of these tumors. On its own it means little, and it specifically does not mean glioblastomaglioblastoma: A glioma that is given grade 4. Grade 4 is the highest grade there is. The tumor grows fast. Treatment usually starts soon after it is found. It often means surgery, and then radiation and chemotherapy. See the glossary. It has to be read next to the IDH result.
• CDKN2A/B. If both copies are missing, this can point to a grade 3 tumor that is moving faster. See the section above for what it does not mean.
• Ki-67. A count of how many cells are dividing. It helps set the grade.

Your pathology report walks through the document itself, section by section.

If your older paperwork says something different

Two names were retired in 2021, and both of them land here more than anywhere else. If you are holding a report with either one on it, nothing about your tumor changed. The rules for writing it down changed.

• Anaplastic oligodendroglioma. This is now written as an oligodendroglioma, IDH-mutant and 1p/19q-codeleted, grade 3. The word anaplastic has gone and the grade carries what it used to say. It does not mean something was missed.
• Oligoastrocytoma, sometimes written as a mixed gliomaglioma: A tumor that starts in the glial cells. Those are the support cells of the brain and spinal cord. Gliomas are given a grade from 1 to 4. The grade says how the tumor is expected to act. See the glossary. This one did not get renamed. It was eliminated, and the reason is the whole subject of this page. That name was used when a tumor looked like it had both cell types in it and nobody could settle which it was. The 1p/19q test settles it. A tumor with the co-deletion is an oligodendroglioma, and one without it is an astrocytoma. So the name did not disappear because it was wrong. It disappeared because there is now a test that answers the question it was invented to dodge.

If your report says oligoastrocytoma and nothing else, that older name is the strongest reason on this page to ask whether your tissue can be tested now. It is the question in the section above, and this is who it was written for.

If your report does not mention 1p/19q

Some reports do not have this result. Older ones often do not. Over six years, reported testing for it rose from under half of cases to about three in five. Whether it was done also varied by where people were treated and by who they were. So a gap here is not always a mistake, and it is a normal thing to ask about.

It is a fair question, and there is a direct way to ask it: ask whether the tissue already taken can be tested now. Your team will know whether it can. Getting the answer can change both the name of your diagnosis and the treatment you are offered, which is why it is worth asking rather than waiting for it to come up.

How is it usually treated?

A tumor board is a meeting where specialists look at one person's case together: surgeons, cancer doctors, the lab, and the people who read scans. It tends to happen when a case is complicated or something is hard to read.

You do not go to the meeting. Afterwards, the doctor who knows you best explains what was said.

What they decide is advice, not an order. The choice is still yours. Because you are not in the room, tell your team what matters to you before it happens, so it is taken into account.

• Surgery first, where it is possible. Taking out as much as can safely come out is the usual first step. Even when the whole tumor cannot come out, removing part of it can help with seizures. If the tumor is close to the parts that handle speech or movement, you may be awake for part of it. Awake brain surgery explains why.
• Radiation to the area the tumor was in, usually after surgery.
• PCV chemotherapy, which is three drugs given together. It usually comes after the radiation is finished, not at the same time.

Why PCV, and why on this tumor

This is the question people most want answered and most often get a vague answer to.

The 1p/19q co-deletion is not only the thing that names this tumor. It is also what tells your team the tumor is unusually likely to respond to chemotherapy. One chromosome loss is doing both jobs. So the label and the treatment are two consequences of the same biological fact, and that is the real reason everyone waits for that test rather than getting on with something.

That is why chemotherapy is part of the plan at either grade, rather than something held back. PCVPCV: Three chemotherapy drugs given together: procarbazine, lomustine and vincristine. It is the usual choice after radiation for an oligodendroglioma. See the glossary is the one most often chosen.

PCV or temozolomide? This one is genuinely open

You may meet somebody with a brain tumor who takes a single capsule at home and wonder why you are being offered three drugs.

Both are real options and the choice is not settled.

• Temozolomidetemozolomide: A chemotherapy taken as a capsule, used for some brain tumors. Your team checks your blood counts while you are on it. See the glossary is one drug, taken by mouth, and it is easier to tolerate.
• PCV is three drugs, it is harder work, and recent evidence suggests it may do better for people whose tumors are 1p/19q co-deleted.

A trial called CODEL was designed to compare the two directly. Until it reports, this is a real conversation to have with your team rather than a question with a known answer. It is reasonable to ask which one they are recommending for you and what is behind that.

There is one more thing worth knowing: temozolomide can sometimes drive changes in a tumor that make it harder to treat if it comes back. That is one of the things weighed in the choice.

Vorasidenib

For a grade 2 tumor with an IDH change, where some tumor is left after surgery or it has come back, there is a newer drug called vorasidenib. It is taken by mouth and it acts on the IDH change itself. It was approved in 2024 for people aged twelve and over.

It applies to a specific situation, not to everybody with this diagnosis. If it has not been mentioned, it is a fair thing to ask about, and a fair thing to ask what the answer is based on.

What is treatment actually like, and what is normal afterwards?

The library pages cover the detail: what a craniotomy is like, what radiation is like, and what chemotherapy is like, including the fever rule, which is the one thing to know before you start.

Two things specific to this tumor:

Seizure control is part of the treatment, not a side issue. For this diagnosis, how well your seizures are controlled is one of the things treatment is judged on. If your seizures are not well controlled, that is a reason to go back to your team, not something to put up with between appointments.

If your tumor is grade 2, the timing of radiation is a real choice. Having it early rather than later has not been shown to change how long people live. It does tend to give a longer stretch before the tumor grows again. It also tends to give better seizure control after surgery. Some teams choose to wait and some do not. Ask out loud rather than assuming the timing was fixed. Watching a tumor, step by step covers what the waiting involves.

For a grade 3 tumor this is not the same conversation. There, treatment after surgery is the standard plan rather than something to time, and the question to ask is what the plan is rather than whether to wait.

Everyday life: work, driving, seizures and tiredness

Seizures are the hallmark of this diagnosis, and they are often part of daily life for years rather than a one-off event.

• Living with seizures covers the practical side: triggers, sleep, medicine routines and telling people.
• What to do during a seizure is worth reading before you need it, and worth showing to the people you live and work with.
• Your seizure medicine has a page of its own. It covers what it can do to mood, and why the dose is not yours to change.
• Driving rules depend on where you live and on your seizure history. Your team knows the rules where you are. Ask directly rather than guessing, and ask again after any change in your medicine or your seizures.

Work and money. Many people keep working with this diagnosis, and many change what they do or how much of it. If you cannot drive, getting to work is often the harder problem rather than the work itself. Ask your team early who at the hospital helps with the practical side. There is usually somebody, and people tend to find them late.

Tiredness is common and is usually not the same as being sleepy. Frontal lobe tumors and their treatment can also affect concentration, word-finding and patience, and those are the changes people around you may notice before you do.

Follow-up scans, and what to do while you wait

This is a diagnosis followed with scans over a long time, so the waiting is something you will do repeatedly rather than once.

The wait between a scan and its result is the hard part for most people, and the worry usually peaks there rather than in the scanner. Waiting for results covers what is actually happening during the wait and why it takes as long as it does.

A stable scan is the ordinary outcome for many people for a long time. A change on a scan is not always growth: it can be an effect of treatment, and telling the two apart sometimes takes a second scan rather than a decision on the day. Pseudoprogression is the word for that, and that page also goes through what each scan is compared with and what the words on the report mean.

If it comes back, or changes

This tumor can come back, and it can come back a long time later. It can also change over time into something that grows faster.

Neither of those is the end of the options. There is usually more than one thing left to try: further surgery, radiation to a smaller area, a different chemotherapy, or a clinical trial. What is right depends on what was used before, how long the gap was, and where the tumor is.

The thing worth doing now, before any of that: ask your team what would make them want to see you before your next appointment, and write the answer down.

Did I cause this?

Almost everybody asks this, usually in the first week, usually in private. It is worth answering plainly.

For most brain tumors, nobody knows the cause. That is the honest state of it. The exact cause of most brain and spinal cord tumors is not fully understood, and there are very few well established risk factors. Tumors start when genes that control how cells grow and divide are changed, and in most cases those changes happen by chance during a person's life. Not because of something done or not done.

Cell phones. They give off a kind of radiation called radiofrequency. It is not the same as the radiation in an x-ray. The energy is too low to damage DNA, and it is not known to cause cancer. The evidence so far is that using a cell phone does not cause brain tumors.

Stress. There is no scientific evidence that stress causes brain tumors, and no data linking stress to a higher chance of getting one. A hard year before a diagnosis is a hard year. It is not a cause.

Something you ate, or did not eat. No food and no diet is an established cause of a brain tumor. It is not on the list of known risk factors at all.

Something you passed on, or caught. Brain tumors are not contagious. Most are not inherited either. A small number of people do have an inherited condition that raises the risk, and if that applies to you, your team will raise it and offer to talk it through.

If you are turning this over at three in the morning, that is ordinary and it happens to nearly everyone. It is also worth saying out loud to somebody on your team, because they have answered it many times and they would rather you asked.

What might happen over time

For the person caring for someone with this

If you are the one driving to the appointments, keeping track of the pills, and lying awake at night worrying about them, this part is for you.

You are allowed to ask questions. In one study, families said they were afraid of annoying the doctor by asking too much. One of them was told by a doctor to stop playing doctor. Ask anyway. Write your questions down before you go, and bring a notepad. Two people in the room hear more than one.

Ask who your first call is. Care comes from a lot of people at once, and it is easy to end up as the only one holding it together. Ask the team: who do I call first? Some teams have one person whose job this is, often a nurse. Get the name and the number.

Get two numbers, and know which one to use. One for work hours, one for nights and weekends. Then ask what counts as "call us today" and what counts as "call an ambulance" for this tumor, and write the answer down where you can see it. If you are not sure which it is, call. Nobody on that team will mind.

If they have seizures, read about them before you need to. What to do when someone has a seizure is the one to know by heart. Living with seizures is about the rest of the time: what is safe, what to change, and driving.

Ask to be shown anything you are sent home to do. In that same study, families were sent home to change dressings and give medicines with no training at all. That is not fair to you. Before you leave the hospital, ask someone to show you. Then do it once while they watch.

Say what you notice. You may see a change before they do. Changes in thinking, mood and behavior can show up to the people close by first. Telling the team is not going behind their back. It is something the team cannot learn any other way.

Look after yourself, and let people help. Eat, sleep, and keep your own appointments. Take a little of the day back for yourself. When someone asks what they can do, give them a real job: a meal, a ride, an hour with the kids. Most people want to help and do not know how to offer.

You can talk to somebody about all of this today. See where to get help.

For a lot of people in this position, the seizures turn out to be the harder part of daily life, rather than the tumor itself. They come without warning, they happen in public, and they put you in the position of watching. Knowing what to do turns that from dread into something you can handle. So does knowing which seizures need an ambulance and which do not. What to do during a seizure draws that line.

The other thing worth knowing early: changes in personality, patience and word-finding can come from a frontal lobe tumor itself. They are not the person choosing to be different.

What to ask your team

• Were both results found, the IDH change and the 1p/19q co-deletion?
• If 1p/19q is not on my report, can the tissue I already gave be tested now?
• What grade is it, and what set the grade?
• What were the ATRX, TERT and CDKN2A/B results?
• Is the plan PCV or temozolomide, and what is that based on for me?
• Should radiation happen now or later, and what changes if we wait?
• Am I someone vorasidenibvorasidenib: A medicine approved in 2024 for some people with a grade 2 glioma. The glioma has to have an IDH change. The medicine acts on that change itself. It is taken after surgery. See the glossary could apply to? If not, what is that based on?
• My older paperwork says something different. Which name applies to me now?
• How well controlled do you think my seizures are, and what would better look like?
• What are the rules about driving where I live?
• What would make you want to see me before my next appointment?
• Who do I call after hours, and what number is it?
• Is there a clinical trial I should know about? (Worth asking now, not only if it comes back.)

Where to get support

• Getting help now if you need somebody today.
• Living with seizures for the practical side of seizures, which are the hallmark of this diagnosis.
• What to do during a seizure, worth reading before you need it.
• Your team's specialist nurse, who is usually the fastest way to get a question answered without waiting for a clinic appointment.
• Other people with the same diagnosis. Many people say this helped more than they expected, once they found the group that matched their actual tumor rather than brain tumors in general.