Something showed up on your scan, and it has no name yet

For the days between being told there is something on your scan and being told what it is. The seven steps, and why a scan often cannot say on its own. Why benign is the wrong comfort word in the brain. And what you can ask for this week.

The short version

You have been told there is something on your scan. That is not a diagnosis, and nobody is keeping one from you. A picture can suggest what a thing is. Confirming it almost always means taking a piece of it and testing that, and the name arrives in stages while those tests run.

There is a path, and it has about seven steps. Right now it probably feels like nothing is happening. Usually something is, and you are allowed to ask which step you are on. That one question turns a silence into a place on a map.

This page is for the days in between. It covers what happens next, why a scan often cannot say on its own, and what you can ask for this week.

What have you actually been told?

That a scan found something. That is all, and it is worth being precise about, because it is less than it sounds.

A scan shows a shape. It shows where the shape is, how big it is, how much of the dye it soaks up, and how the water moves inside it. It does not show what the cells are. The word your team may use for the shape is a lesion, which just means an area that does not look like the tissue around it. It is not a diagnosis either.

Most brain tumors are found because they start to cause something. There is no screening test for them, so almost nobody has their brain scanned without a reason to. That cuts the other way too: the things that sent you for the scan can be caused by plenty of other things.

So there are three separate questions, and only the first one has been answered. Is there something there? What is it? What happens about it?

What happens next

Here is the path most people take. Not everyone goes down all of it, and some of it overlaps, but this is the shape.

1. A scan finds something. Often a scan done for a symptom, and sometimes a scan done for something else entirely. If yours was the fast scan in an emergency room, your CT scan explains what that one can and cannot say.
2. A better picture. Usually an MRI with contrast dyecontrast dye: A liquid put into a vein before some scans. It makes certain tissues stand out, which helps show where a tumor is. It does not always show the whole of it. See the glossary, if you have not had one yet. This is the step that narrows the list.
3. A referral to a specialist team. Your images and your notes go to people who look at brains all day. How that is arranged differs from place to place, so this is a fair thing to ask about by name.
4. A decision about tissue. Take a small sample, take the whole thing out, or take nothing and watch. All three are real answers.
5. The first look. If tissue is taken, somebody looks at a piece of it right away, while you are still in the operating room.
6. The lab work. The rest of the tests run over days and weeks, and they are what produce the full name.
7. A plan. Often after a meeting where your case is talked through by the whole group.

The useful part of this list is not the list. It is that you can ask which number you are on. Your team can answer it in one sentence, and it turns "nothing is happening" into "they are waiting on step 6".

Two honest notes about it. Some people stop at step 4 and never go further, because watching is the right plan for what they have. And the steps do not always run in that order, so what you get is your team's version of it, not this one.

Waiting for your results picks up at step 5 and goes through the rest of it properly, including how long each test takes and why the name can change while you wait. It counts its own steps from one, so a number there is not a number here.

Why the scan cannot say on its own

A scan is a very good photograph. That is the whole of its power and the whole of its limit.

Several very different things can make a very similar picture. One example is a round spot with a bright ring around the edge. The list of things that produce that picture includes a tumor that started in the brain, a tumor that spread from a cancer somewhere else, an infection, an area of inflammation, an old stroke, and old bleeding that is breaking down.

Four of those are not a tumor at all. That is not a comforting detail thrown in. It is why your team will not name it yet.

An infection can look like a tumor. A pocket of infection in the brain is called an abscess. On a scan it makes a ring like the one above, and brain tumors sit on the list of things a team has to tell it apart from. There is a particular kind of picture, called diffusion, that helps.

Inflammation can look like a tumor too. There is a kind that makes a large patch which mimics a tumor closely enough that people have the operation and the answer comes back as inflammation instead. The ring and the crowding on the scan are what fool it.

So when 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 writes a list rather than a name, that is not hedging and it is not bad luck with your doctor. It is the honest output of the machine.

What closes the question is usually a piece of it. A scan can often give a good idea of the type. Confirming it means taking some tissue and testing it. There is a narrow exception, for a thing sitting somewhere that would be too risky to take a piece of, and is there a way to find out without one? sets out when that applies. It is your team's call rather than something to ask for, and it is a conversation rather than something that happens quietly.

Where is this coming from?

Whatever it turns out to be, one rule explains most of what you have noticed. Where a thing sits in the brain usually decides what you feel. The next section is a map that lines the parts of the brain up against what people notice, and it names the one exception.

Two things before you read on, because the rest of this page was written for somebody further along than you are. It opens by saying that most people are told what they have long before anyone explains what it is doing. For you that is the other way round, and being here early is the one thing that is different. And it says "your tumor" in several places, here and in the caregiver section near the end. Nobody knows yet whether that is what you have, so read those words as "whatever this turns out to be."

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.

When to call, and what for

Nobody has told you what this is, so nobody has told you what your warning signs are either. Until they do, use this list.

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.

One more, and it belongs to this page rather than to the list above. An infection is one of the things that can make the picture you have. If you run a fever while you are waiting, call your team today rather than saving it for the appointment. Plenty of people who do have an infection in the brain never run a fever at all, so not having one settles nothing either way. That sits on top of the two rules above rather than instead of them, and the rule above still holds: if you are not sure, call.

Were you sent home with anything?

Two things often start before anybody has a name, and both of them trip people up because they arrive without an explanation attached.

A steroid. It is given for the swelling rather than for the thing on the scan, so feeling better on it is not news about what the thing is. It also changes sleep, appetite, mood and blood sugar, and there is one rule that matters more than the rest: it is not a medicine to come off on your own. Steroids explains why, and what coming off it looks like.

A medicine to stop seizures, if a seizure is what sent you for the scan. Anti-seizure medicines goes through what they do, and through the side effects that are easiest to mistake for the illness.

And if a seizure is what happened, driving is the thing that changes first, and it changes now rather than when somebody finally names the thing on your scan. The rules are set where you live, so ask your team on the day rather than guessing. Driving and seizures has the rest of it.

Will I need a piece of it taken?

Maybe, and it is the question step 4 exists to answer.

The thing worth understanding now is what the decision turns on, because it is not what most people assume. It is not how badly anybody wants the answer. It is where your thing is sitting and how well you are, and those decide between three different plans: 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, an operation that takes the whole thing and gives the lab a sample on the way, or neither for now.

So the useful question is not "do I need a biopsy". It is "which of the three are you thinking about, and why that one?"

Having a biopsy sets the two operations side by side, goes through the day itself, and covers what can go wrong. Watching a tumor, step by step is the third one, which is a plan rather than a delay. Getting ready for surgery covers the week before an operation.

How long until it has a name?

Longer than you want, and there is a reason for each part of it.

The quick look during the operation takes minutes. The answer from the microscope takes days. The gene tests take weeks, and for a lot of brain tumors the gene results are part of the name, so the full name waits for them.

You may be told part of the answer before you are told all of it, and that is the thing most worth knowing in advance, because when it happens it feels like being told two different things by the same team.

Waiting for your results has the real durations, why some of it is counted in weeks, and what to do with yourself in the meantime.

The name is what unlocks the rest. Once you have the name, the library has a page on that exact type: what it is, how it is usually treated, what to expect. None of that can be written for your type here, because none of those questions has an answer until the name arrives.

Why "benign" is the wrong comfort word here

You may be told a thing looks benign. It is worth knowing what that word does and does not promise, because in the brain it promises less than it does anywhere else in the body.

Outside the head, benign means a growth that stays where it is. That part is still true here, and it is genuinely worth knowing.

What it does not mean is harmless. The skull cannot stretch. A growth that never spreads anywhere still takes up room, and it can still damage the brain next to it as it gets bigger. Both kinds can be life-threatening, because of where they sit rather than because of what they are.

Look at what the people who count these things write. The registry that keeps the numbers for the whole of the United States does not use the word benign at all. It writes malignant and non-malignant. That second word is the more honest one, because it says what a growth does not do without promising anything about what it does.

So if you are told it looks benign, that is real information and it is worth having. The follow-up that gets you the rest of it is: where is it sitting, and what would it do if we left it alone?

Why nobody has given you a stage

Because there is not one to give.

Brain tumors are not staged the way most cancers are. There is no formal staging system for them. If you have been waiting to be told a number from one to four that means how far it has spread, it is not coming, and nothing is being kept back.

What you get instead is a type and a grade. The type is what kind of cells it is made of. The grade is a number for how the tumor is expected to behave, worked out from how the cells look and from what the gene tests find. So both of them usually wait for tissue. What the grade means walks through it on a real report.

There is one situation where a stage does turn up, and it belongs to a different cancer. That is the next section.

Did it start in my brain, or somewhere else?

This is the fork, and it is the one that changes the most.

Something that started in the brain is called a primary brain tumor. Something that started somewhere else in the body and traveled is called a secondary, or a metastasis. They are named differently, treated differently, and looked after by different people.

Of the ones found in adults, more came from somewhere else than started in the brain. So if nobody knows of a cancer in you yet, expect questions about the rest of your body, and probably scans of it. That is your team answering the question, not assuming the worst.

If it turns out to have come from somewhere else, there will be a stage, and it will be the other cancer's stage rather than a brain one. Brain metastases covers all of that, including what happens when the search does not find a starting point.

The meeting about your case

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.

Asking somebody else to look

Two different things get called a second opinion at this stage, and only one of them is available to you yet.

Before there is tissue, the thing to ask about is the plan. Whether to operate, what to take, and whether to watch instead are judgment calls, and asking another team what they would do is an ordinary thing to do. Your team can point you at somebody, and it is fair to ask them to. Some people go to a center that does a lot of this, and asking whether there is one near you is a reasonable question rather than a criticism of anybody.

After there is tissue, the diagnosis itself can be looked at again, and that is a different thing from a second opinion on the plan. Can someone else look at my slides? goes through how it works, what it costs, and whether treatment has to wait.

The one worth asking for now is the first one, because it is about a decision that has not been made yet.

What you can do this week

Not much of this is under your control. These parts are.

• Ask for copies of your scan and your report. On a disc, or through the patient portal. You will be asked for them more than once, and having them saves a week later.
• Write down the exact words you were told, and who said them. You will be asked to repeat them, by other doctors and by everybody else, and a note beats reconstructing a conversation you were in shock during.
• Take somebody with you to the next appointment, so you are not the only person who has to hold on to it.
• Ask who your first call is, and get the number. Then ask what would make them want you to use it.
• Do not try to read your own radiology report as a diagnosis. It is a careful description of a picture. A name and a grade almost always wait for tissue, so the report cannot hold them yet, however closely you read it.

Did I cause this?

You do not have a name yet, and this question does not wait for one. What follows is about brain tumors, because that is the possibility this page is filed under.

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.

"Should I have come in sooner?" This is the version people ask at this stage, and it deserves its own answer. There is no screening program that would have caught this earlier, so there was no earlier to come in to. And the things that finally sent you are things that are usually caused by something else entirely, which is why neither you nor your doctor jumped to this.

None of that means it did not matter. It means the question you can act on is the one further up the page: which step am I on, and what is the next one? That one has an answer, and somebody can give it to you this week.

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.

Three things below belong to this stretch rather than to tumors in general.

The job this week is writing it down. Go to the appointment, write down what is said and who said it, and come out with the answer to which step they are on. Then the two of you are working from a note rather than from two different memories of the same ten minutes.

You will want to look it up, and there is one search to avoid. Reading about the most frightening thing on the list answers a question nobody has asked about them yet, and it can take the week. If you are going to read, read about the step they are actually on.

You are allowed to call the team yourself, between appointments. Everything above is about the room. This is the other half of it: if something happens at home, a seizure most of all, you are the only person who saw it, and nobody is going to think to ask you about it at the next appointment. Write down what you saw and what time it was, and use the number that day.

What to ask your team

• Which step am I on now, and what is the next one?
• What are the possibilities you are working from, including the ones that are not cancer?
• Can the scan alone answer this, or will you need a piece of it?
• If you need a piece, is that a needle or an operation, and why that one?
• Has my scan been looked at by the specialist team yet, and when did that happen?
• Is my case going to a tumor board, and when?
• Who do I call before then, and what would make you want me to call today?
• What is the after-hours number?
• Can I have copies of my scan and my report?
• Do you think this started in my brain, or somewhere else, and how will you tell?
• If it turns out to be unusual, would you send it somewhere else for another look?
• Who would you suggest if I wanted another opinion on the plan?

Where to get support

• Get help now if you would rather talk to a person today.
• Waiting for your results once tissue has been sent.
• Having a biopsy if step 4 is where you are.
• MRI scans if the next thing is another scan.
• Your CT scan if step 1 was a scan in an emergency room.
• What to do during a seizure if that is what started all this.
• The tumor pages for when you do have a name.