High-grade glioma

High-grade glioma means grade 3 or grade 4. It is a group, not a diagnosis, and two tumors in it can be very different. What the grade tells you, and why a scan can look worse while treatment is working.

The short version

"High-grade 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" is a group, not a diagnosis. It means grade 3 or grade 4. Several different tumors sit in that group, and they are not the same as each other. Two of them can both be grade 4 and still need different treatment. So the number on its own does not tell you what you have. The full name on your pathology report does, and this page is about finding it and reading it.

What is a high-grade glioma?

It is a phrase doctors use for a glioma that grows fast. It is not the name of a tumor, and it will not appear on your report by itself.

Glioma is the family. High grade describes one end of it. Your actual diagnosis is a specific name with a grade and some gene results attached, and it is on your pathology report. Your pathology report, part by part shows you where to look.

What sits under the label

In adults, these are the names you are most likely to meet:

• Astrocytoma, IDH-mutantIDH 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, grade 3 or grade 4.
• Oligodendroglioma, IDH-mutant and 1p/19q-codeleted, grade 3.
• Glioblastoma, IDH-wildtype, grade 4. This is the most common one.

There are others. Some are named after a change in a gene called H3, such as diffuse midline glioma. Some belong to the group usually seen in children, which can also turn up in adults.

So the first question to ask is a plain one: what is the full name of my tumor, not just its grade?

Is it cancer? What does its grade mean?

Yes. A high-grade glioma is cancer. The word your team will use is malignant.

The three named above grow into the brain around them rather than pushing it aside, so there is no edge to cut around. For those, with today's treatments, they are not curable. That is a hard sentence and it is here on purpose, because being told the grade without being told this is how people get tripped up later.

A smaller number of high-grade gliomas are not like that. Some sit in a more defined lump with a clearer border. Your team may call those circumscribedcircumscribed: A tumor with an edge. It sits apart from the brain around it rather than growing into it. It is the opposite of diffuse. That is why some of these can be cured by an operation. See the glossary. It is on your pathology report, and it changes what surgery can do, so it is worth asking which kind yours is.

Not curable is not the same as untreatable, and it is not a timeline. Treatment works, and for some people it works for a long time. What it means is that this is managed over years rather than finished in one go, which is why the scans do not stop and why your team keeps making appointments.

What the grade actually describes

A grade describes how abnormal the tumor cells look under a microscope, and what the gene tests say. Grade 3 and grade 4 both count as high grade. They are not the same thing as each other, and being told "high grade" without being told which one leaves you with a blurry picture.

Two things about grade trip people up.

Grade does not mean the same thing across different tumors. Since 2021, grading is done inside each tumor type. So the same number on two different diagnoses does not describe the same thing. If you and somebody else have different names on your reports, comparing your grades tells you much less than it looks like it does.

This is the one that matters most when you read about other people. A tumor with an IDH gene change can be grade 4 and is still not called a 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. These tumors were found to behave differently from the ones still called glioblastoma, so in 2021 they were moved out from under that name. Same number, different disease, different plan. The words on your gene results explains IDH itself.

There is no grade 4 oligodendroglioma. If your diagnosis is an oligodendroglioma, grade 3 is the top of its scale. It is not one step below a worse version of itself, because there is no worse version to be one step below. It is easy to brace for a grade 4 that does not exist here, so it is worth asking your team to confirm which tumor you have.

Why does my report say grade 4 when the scan looked milder?

Because a gene result can now set the grade on its own, even when the cells look lower grade.

An IDH-mutant astrocytoma is called grade 4 if both copies of 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 are missing, whatever the cells look like. A tumor without an IDH change can be called glioblastoma, grade 4, on gene results alone.

It is not a mistake and nobody was hiding anything. The gene results took longer to come back than the first impression did, and they carry more weight. The words on your gene results takes them one at a time, and that page plus a conversation with your team are the two things worth having.

Did this start as something smaller?

Sometimes it did, and the name on your report is what tells you which.

A glioma that began at grade 2 and changed over time keeps the name astrocytoma when it reaches grade 4. It does not become a glioblastoma. That is why two people can both have a grade 4 tumor and have arrived there by completely different routes.

A glioblastoma is the other route. It is IDH-wildtype, and one of the things doctors check before settling on that diagnosis is whether there was a lower-grade glioma there beforehand.

If you are wondering whether something was missed for years, that is a fair question and not a rude one. Your team can answer it from your report and any earlier scans you have had.

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

These tumors can start anywhere in the brain or spinal cord, but most often they are in the upper part of the brain. Your team may call that supratentorialsupratentorial: In the upper part of the brain, above the sheet of tissue that separates it from the lower part. Most adult gliomas are found here. See the glossary. It is the part that handles movement, speech, feeling and thinking, which is why those are the things most often affected.

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.

What is different about a fast-growing tumor

A slow tumor gives the brain time to adjust around it. A fast one does not. That is a large part of why these tumors are found sooner and cause trouble sooner.

• The swelling sits where the tumor cells already are. With these tumors, the swollen brain around the tumor is brain the cells have spread into. It is a large part of why you feel how you feel, and it is treatable on its own.
• Symptoms build over weeks, not years. People often describe a few weeks of something being wrong rather than a long slow drift. If you look back and cannot find years of warning signs, that is not something you missed.
• These tumors usually take up the dye on a scan. Slower ones often do not. It is one of the things that made your scan look the way it did. Your MRI scan goes through what the dye is doing.

None of these are things you can change by having noticed sooner. They are things to tell your team about, because most of them can be treated.

What symptoms does it cause?

The most common are headaches, seizures, feeling sick to your stomach or throwing up, weakness or numbness on one side, trouble with speech, and changes in thinking, behavior or personality. Which ones you get depends mostly on where the tumor sits, which the section above walks through.

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?

Usually a scan first, then a piece of the tumor.

• An MRI scan shows where it is and something about how it is behaving.
• A tissue sample, taken either 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 a high-grade glioma. It cannot give you the name.
• Gene tests on that tissue. These decide both the exact name and, often, the grade.

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

The answer arrives in layers rather than all at once, and the name can change as later results come back. Waiting for results is about that wait.

What do the words on my report mean?

Your report should carry the tumor type, a grade and the gene results, brought together into one answer. That combined answer is what your team treats.

Your pathology report, part by part walks through the document, and the words on your gene results explains each test.

If your paperwork uses words you cannot find

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 word that used to mean grade 3

Anaplastic. That is the retired word this page's readers are most likely to be holding, and it has a simple explanation.

Before 2021, doctors put the word anaplastic in front of a tumor's name to say it was grade 3. So an anaplastic astrocytoma was a grade 3 astrocytoma, and an anaplastic oligodendroglioma was a grade 3 oligodendroglioma. The word is no longer used that way. The grade number does that job now.

• Anaplastic astrocytoma is now written as astrocytoma, IDH-mutant, grade 3.
• Anaplastic oligodendroglioma is now oligodendroglioma, IDH-mutant and 1p/19q-codeleted, grade 3.
• Glioblastoma multiforme, or GBM, is now just glioblastoma. Many people still say GBM in conversation.
• Secondary glioblastoma, or glioblastoma with an IDH change, is now called astrocytoma, IDH-mutant, grade 4. The page you want for that one is astrocytoma.

You will still hear all of these said out loud, including by doctors. Nothing about your tumor changed when the words did. If an old report and a new one do not match, that is a good thing to take to your team and ask about.

How is it usually treated?

Most people have some combination of surgery, radiation and chemotherapy. Which combination, and in what order, depends on the exact diagnosis.

• Surgery, to take out as much as can safely be taken and to get tissue for testing. 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 therapy, usually after surgery, and usually over several weeks.
• Chemotherapy, as pills or into a vein.

Alongside those there is supportive treatment: medicine to bring swelling down, medicine to control seizures if you have had one, and help with tiredness.

Clinical trials are a normal part of this conversation, at diagnosis and again later. Asking about one is not a sign that the usual treatment has failed.

Why is my friend on different chemotherapy?

This is a fair question and it has a real answer. The three main diagnoses are treated differently on purpose, because they behave differently.

• Glioblastoma, IDH-wildtype, grade 4. Radiation and chemotherapy are given at the same time, and then the chemotherapy carries on afterwards. Your team may call the combination chemoradiation, or the Stupp protocol, after the doctor who designed it.
• Astrocytoma, IDH-mutant, grade 3. Radiation first, then the chemotherapy afterwards. Giving the drug during the radiation as well was tested for years and did not help, so it is usually left out.
• Oligodendroglioma, grade 3. Radiation first, then a different combination of drugs, called PCVPCV: Three chemotherapy drugs given together: procarbazine, lomustine and vincristine. It is the usual choice after radiation for an oligodendroglioma. See the glossary.

So two people can both say "grade 3" or both say "grade 4" and be on genuinely different plans, and neither of them is being short-changed. If you want to understand yours, the question that gets you the answer is: which of these is my diagnosis, and why this plan for it?

There is also a device worn on the head that treats the tumor with electrical fields. It is called tumor treating fieldstumor treating fields: A treatment that makes it harder for tumor cells to divide. It uses electric fields that switch back and forth. The fields come from pads on the scalp. A box you carry drives them. The box is often called Optune. See the glossary, and it applies to some glioblastomas. It is worth knowing that experts disagree about it: the European guideline calls its role controversial and says it is not widely available there. So ask your team what they think of it for you, rather than assuming either way. Living with the device covers what wearing it is like, and why experts differ about it.

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

The library pages go through the day-to-day of each one. What the operation involves, and the weeks after it. What a course of radiation is like from the inside. What chemotherapy does to your blood counts.

Two things worth knowing before you start.

Finishing treatment is not the same as feeling finished. Tiredness after radiation often arrives late and lingers for weeks. Thinking and memory can feel slower for a while. Neither means treatment failed.

"Is this the tumor, or the medicine?" is a question worth keeping in your pocket. Steroids cause muscle weakness. Seizure medicines can affect mood and temper. Both can look like the tumor winning when they are not. Steroids goes through the first one properly, and the pages linked above cover the rest.

Everyday life: work, driving, seizures and tiredness

Seizures and driving. The rules about driving depend entirely on where you live, and in some places it is your doctor who has to report it rather than you. Living with seizures covers the practical side, and the driving section is the place to start before confirming it with your own team.

Work and money. Some people keep working, sometimes with changes to hours or duties. Some cannot. The financial side is one of the most stressful parts of this and it is worth asking early what help exists, rather than when it is urgent.

Tiredness and thinking. Tiredness here is not ordinary tiredness. People around you may not see how heavy it is. Memory and focus are often hit too. Say both out loud to your team rather than pushing through. There are things that help, and nobody offers them if they do not know.

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

Scans continue after treatment, usually for as long as you are being followed. They are how a change gets found while there are still choices about it.

The waiting has a name: scanxiety. Patients coined it. For most people the hardest part is not the scan itself but the gap between the scan and the result. Knowing that in advance tells you which days to plan something for.

If your scan looks worse after radiation

A scan that looks worse in the first few months after radiation does not always mean the tumor has grown. This has a name, and it is often not explained in advance: pseudoprogression.

Here is what it is. Radiation and chemotherapy damage the tumor, and the body's response to that damage shows up on a scan looking very much like growth. It is a change caused by the treatment working, not by the tumor winning. It usually shows up within about the first three months after treatment finishes.

It can make you feel worse too, not just look worse. That is the part people are least prepared for. Swelling from the treatment effect can cause real symptoms, and those can be treated.

This is why your team may say "let's scan again" instead of changing the plan. There is a rule they follow. For the first twelve weeks after radiation, they will not call a change growth unless a repeat scan a few weeks later shows the same thing, or the new area sits outside where the radiation was aimed, or a sample shows it. Waiting is often the only way to tell the two apart.

Those twelve weeks are hard, and the researchers who study this say so plainly. One paper puts it like this: when a scan looks worse early, families can wait with anxiety for the recommended twelve weeks to find out what the treatment did. Nobody is being casual with you. Ask what your team thinks they are looking at, what the next scan would show, and what you should call about in the meantime. Those three answers make the gap easier to live in.

Later on: radiation necrosis

Something similar can happen much later. Months, or even years, after radiation, a patch of dead tissue can form where the treatment was aimed. The name for it is radiation necrosisradiation necrosis: Damaged tissue where radiation was aimed, months or years later. On a scan it can look like tumor coming back. Telling the two apart can take more scans, and sometimes a sample. See the glossary. It can cause swelling and pressure, and on a scan it can look like the tumor coming back. Steroids often settle it, and sometimes an operation is needed.

It happens rarely. It is worth knowing about, because "your scan has changed" does not automatically mean one thing.

Follow-up scans, and what the results mean is the fuller version of this section: what each scan is compared with, what the words on the report mean, and what the research actually says about the waiting.

If it comes back, or changes

For a high-grade glioma, the plan assumes the tumor will need attention again. That is not pessimism, and it is not a secret being kept from you. It is why the scans continue and why your team keeps looking.

If something does change, there are usually still options:

• More surgery.
• Radiation again, in some situations.
• A different drug.
• A clinical trial, which is worth asking about earlier than most people do.

Which of these are open to you depends on your diagnosis, what you have already had, and how well you are feeling day to day.

A related thing, if you started out lower grade. Some gliomas that began as grade 2 change into a higher grade over time. That is called transformation, and it can go to grade 3 or straight to grade 4. If that is how you arrived at this page, low-grade glioma is where the earlier part of your story is written down.

Being told there has been a change is a hard day. It is not the same as being told there is nothing left to try.

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.

What is different here is the pace. Things can move faster than with a slow-growing tumor, and treatment often starts soon after diagnosis. There may be very little gap between being told and being booked in. If you feel behind from the first week, that is the situation and not you.

The scans in the first few months are the hard ones. If a scan comes back looking worse, it may be the treatment rather than the tumor, and the only way to tell is another scan. That wait is hard on you as well as on them. It is fair to ask the team directly what they think they are looking at.

Watch for the changes only you will see. A shorter temper. Words coming more slowly. Sleeping much more. Say them at the appointment rather than deciding they are too small to mention. Some of them turn out to be the steroids or the seizure medicine rather than the tumor, and those can be adjusted.

If seizures are part of this, learn what to do before you need to. What to do during a seizure is the one to know, and it says which seizures need an ambulance and which do not.

Look after your own health. Keep your own appointments. Let people help with the ordinary things, and say yes when they offer something specific.

What to ask your team

• What is the full name of my tumor, not just the grade?
• Does my tumor have an IDH change?
• Why this treatment plan for my diagnosis, rather than another one?
• How much of the tumor came out, and how do you know?
• If my scan looks worse in the first few months, how will you tell treatment effect from the tumor growing?
• What would make you want to see me before my next appointment?
• Who do I call after hours, and what number is it?
• What should I do about driving and work?
• Is there a clinical trial I should know about?
• Is any of what I am feeling caused by swelling or by my medicines rather than the tumor?

Where to get support

• Getting help now if you need somebody today.
• Living with seizures for the practical side of seizures.
• 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.