Radiation therapy: the mask, the daily visits, and what comes after

What radiation for a brain tumor is actually like. The planning visit where a mesh mask is molded to your face. What a treatment day feels like, and why it runs Monday through Friday for weeks. The tiredness that does not stop on the last day, and the effects that can turn up much later.

The short version

Radiation therapy uses beams of high energy to kill tumor cells. You lie on a table, a machine moves around you, and you do not see or feel the beam. Most people come in Monday through Friday for several weeks. Before any of that starts there is a planning visit, where a mesh mask is molded to your face. Most pages skip that visit, so this one goes through it in detail. Tiredness is the most common side effect, and it does not stop on the last day.

What is radiation therapy?

It is treatment that uses beams of high energy to kill tumor cells.

The beams come from a machine outside your body, so nothing is put inside you. It works a lot like having an x-ray, except the amount of radiation is far higher. The machine is called a linear accelerator. Staff often say "linac".

Radiation damages the DNA inside a cell, which is the set of instructions a cell needs in order to divide.

The doctor in charge of this treatment is a radiation oncologist. You will also meet radiation therapists, who are the people in the room with you every day.

You may hear several names for it. Most of them describe how the beam is shaped, not a different treatment.

• 3D conformal radiation. Scans are used to map exactly where the tumor is. Several weak beams come in from different directions and meet at the tumor.
• IMRT, short for intensity modulated radiation therapy. The same idea, with the strength of each beam adjusted as well as its shape, to spare the most sensitive tissue nearby.
• VMAT. Similar to IMRT, with the machine moving around you in an arc. It can shorten each session.
• Stereotactic radiosurgery. For a small, well-defined target. It can be done in one visit or a few, instead of a course lasting weeks. Nothing is cut, in spite of the name. What that day is like goes through it hour by hour.
• Proton therapy. A different kind of particle, given at a small number of centers. What is different about it, and how people get to one covers the travel and the insurance side.
• Whole-brain radiation. The whole brain rather than one spot. It has its own section further down.
• Radiation to the brain and spinal cord together. Used when a tumor has spread through the fluid around them.

Which one you are offered depends on what your tumor is, where it sits, and what your center has. It is a fair question to ask, and the answer will be about your tumor rather than about which machine is newest.

Why am I having it?

There are three usual reasons, and it is worth knowing which one is yours.

• After surgery, to deal with tumor cells that surgery could not take out. Even after a very good operation, cells can be left behind that no scan sees. Brain surgery: what happens, and what comes after goes through that in full.
• As the main treatment, when an operation is not a good idea. That can be because of where the tumor is, or because of your health more generally.
• To ease symptoms, by shrinking a tumor that is pressing on something.

Ask which of these your radiation is for. It changes what the plan is trying to achieve, and it changes what you should expect to notice.

What happens, step by step

The first appointment

You meet the radiation oncologist. They go through your scans and your history, what the treatment is meant to do, and what it may cost you in side effects.

Bring your questions written down, on paper or on your phone. There are a lot of them at this appointment, and you will not remember them otherwise. Bring somebody with you if you can.

The planning visit, and the mask

This visit is called a simulation. No radiation is given. It is the appointment where your treatment gets designed, and it is the one this page spends the most time on.

Here is what happens, in order.

1. You change into a gown. A wig, hairpiece or head scarf comes off. Tell the therapist if you wear a hearing aid.
2. You lie on a hard, flat table. There is no cushion. If you think lying still will hurt, say so beforehand, because you can take pain medicine about an hour before.
3. A flat sheet of plastic mesh is warmed until it goes soft. It is laid over your face and gently stretched to the shape of your head. It feels like a warm washcloth on your face. You can see through it and breathe through it the whole time, and it does not hurt.
4. Over a few minutes the mesh cools, hardens and holds that shape. That is your mask. It is yours, and it stays at the center between visits. You may see it called a radiation mask.
5. You have a CT scan lying in the mask, in the exact position you will be treated in. You may have a dye through an IV line in your arm to make the pictures clearer.
6. Marks are drawn on the mask and photographs are taken, so that staff can put you back in the same position every day.

You will see red or green laser lines on the walls. Those are guides the therapists line you up against. You will be asked to stay still once things start, and you can ask for music.

Why the mask exists at all. Radiation is aimed at a target a few millimeters across, in an area surrounded by parts of the brain nobody wants to treat. The mask holds your head in exactly the same place every single day, so that what was planned is what is delivered. It is not there to restrain you. It is there so the beam goes where it is supposed to go.

How long the visit takes varies. One cancer center puts the mask-making part at about half an hour; another says to plan on about two hours for the whole appointment, and longer for some treatments. Ask what to expect where you are being treated.

The gap before treatment starts

Nothing happens to you for a few days, and this part worries people.

Behind the scenes a team is building your plan: the radiation oncologist, a physicist, and a dosimetrist, who works out the angles and the amounts. At one large center this takes one to ten working days.

Waiting is not a sign that anyone has stopped caring or that your case has been forgotten. The plan is being made and checked. If the wait is bothering you, call and ask where it is up to. That is a reasonable call to make.

A treatment day

You check in and wait, the way you would at any appointment. Then:

• You lie on the treatment table in the same position as at your planning visit, and the mask goes on and is clipped to the frame.
• Pictures are taken first to check you are lined up correctly. The first day takes longer, because everything is being set up for the first time.
• Everyone leaves the room. You are on your own with the machine, but a camera and an intercom are on the whole time. Somebody can see you and hear you, and you can talk to them.
• The machine moves around you and the beam is delivered. You do not see or feel it.
• Once a week, someone from the team sits down with you to go through how you are doing.

How long does it take?

Most of a treatment visit is set-up. The beam itself is over quickly.

• Each visit: usually somewhere between a quarter of an hour and an hour in the treatment room. The treatment itself takes only a few minutes.
• The whole course: most often Monday through Friday, over several weeks. One common plan for a brain tumor is thirty treatments, which works out at about six weeks of weekdays.
• Other shapes of plan exist. Some people have one single treatment. Some have a handful. A shorter course is sometimes the right plan for a particular person, and that is a decision your team makes with you.
• The planning visit: about two hours.
• The gap after it: one to ten working days at one large center.

Plan your day around the whole visit, not the few minutes of treatment. That matters if you are working, sorting out childcare, or lining up a driver.

Why every day, and why so many?

Because splitting it up is what protects the healthy brain around the tumor.

The total amount of radiation is divided into a lot of small daily amounts. Each one is called a fraction, and dividing them up like this is called fractionation. Healthy cells are good at repairing radiation damage, and tumor cells are usually worse at it. The gap between one day and the next gives the healthy tissue time to repair itself, while the damage builds up in the tumor.

A radiation oncologist put it plainly: give too much in one day and even normal tissue is damaged, give too little and not enough tumor cells are damaged. The daily schedule is the point between those two.

So the length of the course is not a measure of how bad your tumor is. Somebody with thirty treatments is not thirty times worse off than somebody with one. They are different plans for different situations, and both were chosen on purpose.

What does it feel like?

The treatment itself feels like nothing. That is the honest answer, and people often do not believe it until the first day is over.

Radiation is painless. You do not see the beam, and you do not feel it going in. There is no injection and nothing to swallow.

What you do notice is everything around it. One person treated for an ependymoma said the last snap of the mask onto the frame sounded very loud. Then came a "here we go" feeling.

Some people get a smell or a taste that is not there. One person smelled chlorine, like a swimming pool. Others describe an electrical smell, or flowers. It does not happen to everybody, and it is not a sign that something has gone wrong. It is worth knowing about, because it is strange the first time it happens.

You are alone in the room while the beam is on. It is a few minutes, you are being watched and listened to the whole time, and you can speak up. Ask whether you can have music or an audiobook playing. Many centers can, and it is worth asking on the first day rather than putting up with the quiet for the whole course.

If the mask frightens you

Say so. Say it early, and say it to the radiation therapists. At one cancer center a therapist stays beside you through the whole mask-making appointment for exactly this reason: to deal with concerns and fears as they come up. This is a thing they expect to be asked about.

It is worth knowing what the mask is not. It is not solid, and it does not stop you breathing. You can see through the mesh and breathe through it, and staff will tell you so while they are making it. It goes on when you get on the table and comes off when the beam is finished. Ask your therapists how long that is where you are treated, because most of the time in the room is spent lining you up rather than treating.

Things that are worth asking for, and that people do get:

• Medicine for anxiety, taken before you come in. Ask at the planning visit, not on the day. If it helps at that visit, you can take it before your treatments too, about an hour beforehand.
• A run-through without any radiation. Some centers do this as a routine step anyway. Ask whether yours does, so the first time in the mask is not also the first day of treatment.
• Music or an audiobook during the session.
• Somebody talking to you over the intercom. The therapists can hear you and answer you.

There is nothing to be ashamed of in finding this hard. So ask, and keep asking. Tell the therapist how it is going, every day if you need to. They are in the room with you more than anyone else on your team, and they are the ones who can change how this goes for you.

Side effects during treatment, and in the weeks after

Most of what turns up during radiation eases off in the weeks after it finishes, often over about six to twelve weeks. One thing on this list works the other way round and starts once the rest have settled. That is somnolence syndrome, and it has its own section at the end of this one.

Tiredness is the big one. This is not ordinary tiredness and a good night does not fix it. It is the most common problem people report during radiation to the brain. It usually starts after a couple of weeks of treatment, builds as the course goes on, and carries on for weeks to months after the last day. It does get better over time.

Rest helps, and so does moving, and you need both. Plan short naps in the day when you need them, and aim for a long night. Guidelines also suggest gentle exercise: walking, and some light strength work. Pick the things that matter most and do them when your energy is best. Ask your team what is sensible for you, and start smaller than you think you should.

Hair loss, where the beam goes in and out. If your radiation is aimed at one part of the brain, that is where the hair goes, not all over. If you are having whole-brain radiation, expect to lose it from your whole head. It usually starts a couple of weeks after treatment begins. It grows back around three to six months after you finish, and it may come back a different color or texture. If you want a wig, get it before your hair falls out, so it can be matched. Ask whether a prescription would get it covered by your insurance.

Skin and scalp changes. The skin in the treated area can get pink, darker, dry, itchy or flaky. Your forehead, ears and the back of your neck may be affected as well as your scalp. It sometimes gets worse in the week after your last treatment, which is unfair timing. Call your team if that happens. It usually heals over about three to four weeks.

Ask your nurse to point out exactly which skin is in the treated area, then look after it:

• Wash gently and pat dry. Use only the moisturizers your team suggests.
• No perfume, cologne, aftershave, powder or makeup on it.
• Nothing sticky, so no adhesive bandages or medical tape.
• Do not scratch it. Put moisturizer on instead and ask about the itching.
• Avoid shaving the area. If you must, use an electric razor and stop if the skin gets sore.
• No tight hats or turbans rubbing on it, and keep it out of the sun. A sunburn in the treated area can hold up your treatment, which is worth avoiding for something so preventable.

Swelling in the brain. Radiation can make the brain swell. Symptoms you had before can come back or get worse, and new ones can turn up. Watch for a headache that acetaminophen does not touch, seizures, feeling sick to your stomach or throwing up, changes in vision, being unsteady on your feet, confusion, or trouble finding words. Call your team right away if anything is new or worse. A first-ever seizure, or one that lasts more than five minutes, or one that runs straight into another, is an ambulance rather than a phone call. There is treatment for brain swelling, usually a steroid, and telling your team early is what keeps it simple.

The emotional side, which can take people by surprise. One person treated for a meningioma said the worst effect of all was on their feelings. A few weeks in they were sad much of the time, easily hurt and easily overwhelmed. Say that out loud to your team if it happens to you. There is help for it, and it is not a weakness.

Is this the tumor, or is it the medicine?

Ask this before you assume the worst. One medicine often given during radiation causes things that look like the tumor getting worse.

Dexamethasonedexamethasone: A steroid medicine given to bring down swelling around a tumor. It is not chemotherapy. It has its own side effects, so your team lowers the dose when they can. See the glossary is the steroid used to settle swelling around a tumor. It causes weakness in the big muscles of the legs, arms, shoulders and neck, which usually builds up over weeks. Somebody who has started finding a low chair hard to get out of may be having a drug effect, not a tumor effect. It also brings a bigger appetite, weight gain, trouble sleeping and mood swings. Steroids is the page for all of it.

Your team may change your dose more than once during your treatment. When they decide it is safe, they will give you a schedule for coming off it in steps. That is called tapering.

Never stop a steroid suddenly or on your own. It has to come down slowly, on your team's instructions. But do tell them what you are seeing, because doses can be changed and there is usually room to move.

Somnolence syndrome

This one has its own section because of when it happens: not during treatment, but weeks after it has finished, when you were expecting to be picking up.

Some weeks after radiation to the head ends, some people get a stretch of heavy drowsiness. With it come trouble concentrating, feeling clumsy, thinking slowly, and being worn out. It has a name: somnolence syndrome. It usually gets better on its own over a few weeks, with no treatment at all.

When it turns up. A patient charity in the United Kingdom puts it at four to six weeks after radiation to the head. A small study that followed adults through radiation for a brain tumor found it earlier as well, in two stretches: roughly the second and third weeks after treatment, and then around the fifth. So the window is wider than one number suggests.

How often it happens is not settled, and the sources disagree. That charity calls it a rare side effect. That study found it in most of the group it followed. It does not happen to everybody, and nobody can tell you in advance whether it will happen to you. What both agree on is that it lifts.

Here is why it is worth warning you about. In that same study, people put these symptoms down to flu, or some other bug going around. The symptoms were heavy and had no clear cause, and that on its own made people anxious. The study's answer was simple. Telling people in advance that this can happen cuts the fear it causes.

So: if this happens to you, tell your team rather than sitting with it. They will want to check that it is what it looks like. And knowing in advance that there is a name for it, and that it is expected to lift, is most of what makes it bearable.

Side effects that can come later

Some effects of radiation to the brain show up months or years afterward, and they are a real part of the decision.

• Thinking and memory. Radiation to a large area of brain can cause memory problems, trouble concentrating, and changes in personality. How much of a risk this is depends on how much of the brain was treated and where.
• 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. Rarely, a lump of dead tissue forms where the tumor was treated, months or even years later. It can swell and press on healthy brain. It also looks like tumor on a scan, which is why sorting the two out can take more scans. It is often controlled with steroid medicine, and sometimes an operation is needed to take it out.
• Hormones. Radiation that reaches the pituitary gland, at the base of the brain, can change the hormones that control your thyroid, your growth, your sex hormones and how your body handles stress. Tiredness, weight change and low mood can all come from that. Hormone problems after radiation to the head are common enough to be worth asking about, and follow-up for them is not standardized. Ask whether your hormone levels will be checked at your follow-up appointments. It starts with blood tests, and some hormones need a second, longer test before anyone can be sure.
• Eyesight. Radiation near the eye can cause a cataract months or years later, which makes vision cloudy or dim. Cataracts can usually be fixed with a small operation.
• Another tumor, years later. Radiation can damage genes in normal cells, so there is a small risk of a second tumor in the area that was treated. If it happens at all it is usually many years afterward.

None of this is a reason to turn radiation down. Your team is weighing it against what the tumor does if it is left alone, and for people who need radiation that small later risk does not outweigh what the treatment is for. Ask your radiation oncologist which of these apply to the area they are treating, and how they plan to check for them. That question is the useful thing to do with this list.

Am I radioactive?

No. Not during your treatment, and not afterward.

In this kind of radiation the beam comes from a machine, passes through, and is gone. Nothing radioactive stays in you.

You are safe to be around other people and around pets. You can hug your grandchildren and sleep in your own bed. Nobody has to keep away from you.

Whole-brain radiation

Sometimes radiation is given to the whole brain rather than to one spot. That is usually because there are too many tumors to aim at one at a time.

Treating the whole brain means treating healthy brain too. That is why it is a harder choice than aiming at one spot: what it can do to thinking and memory.

There is a way of doing it that protects memory better, and it is worth asking about by name. The hippocampus is the part of the brain most involved in learning and memory. The beam can be planned to give it as little radiation as possible. That is called hippocampal avoidance. It is usually given together with a medicine called memantine, which also helps protect thinking.

A large trial tested it, in people whose cancer had spread to the brain from somewhere else. One group had whole-brain radiation planned this way, plus memantine. The other group had standard whole-brain radiation, plus memantine. The people whose memory area was spared were less likely to lose thinking skills. The tumor was controlled just as well. The gains showed up in day to day tasks, and in learning and remembering. Those people also said they were less tired and found it easier to speak. The people who ran the trial say this is a standard of care to offer.

There are no numbers on this page for that comparison, and that is deliberate. Losing some thinking skills was common in both groups. Sparing the memory area reduced that; it did not prevent it. A percentage from one group, without that fact next to it, makes the treatment sound better than it is. The direction is real, and the direction is what you can act on.

It does not suit everybody, and it depends on where the tumors are. If whole-brain radiation is being talked about, ask this: "Can my radiation be planned to avoid the memory part of my brain, and should I be on memantine?" Your radiation oncologist will know the question at once.

What you need first, and what to bring

Before treatment starts, expect:

• An MRI with dye, often lined up with the planning CT scan. What an MRI is like, and what to ask goes through that appointment.
• The planning CT scan, in your mask, at the visit described above. Your CT scan covers what a CT is, if this is the first one you have thought about.
• Your pathology and gene results, because they affect whether radiation is given and when. The words on your gene results takes them one at a time.
• A pregnancy test where that applies. If you might want children in the future, ask about that before treatment starts. It is on the list of questions patient groups tell you to bring to this appointment.
• Some centers test how your memory and concentration are doing beforehand, so there is something to compare against later. The thinking and memory tests goes through what that day is like.

There are a few things to sort out before your mask is made, because they change the fit:

• Get any dental work you need done first. It can change the shape of your face and jaw.
• Trim a full beard or mustache, and keep it that way through treatment.
• Do not make a big change to your hairstyle.

On the day, bring or wear:

• Comfortable clothes that are easy to get in and out of.
• No jewelry, and no powder, lotion or cream on the treatment area.
• Your list of medicines, including anything you buy yourself.
• Your questions, written down.
• Something to pass the time in the waiting room. You will be doing this a lot.

For the person caring for someone through radiation

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.

Radiation is not one big day. It is a lot of small days in a row, and the load it puts on you is different from the load surgery puts on you.

Getting there is the job. Every weekday, for weeks, somebody has to make the trip. One person treated for an astrocytoma said the hardest part of the whole thing was finding different people to drive them to a hospital forty-five minutes away every morning. Do not try to be the only driver. Make a list of people who offered to help and give each of them a day of the week. Ask the center whether they have transport help, and ask whether some appointments can be moved to a time that works better for you.

Plan for a long appointment, not a short treatment. The beam takes minutes. The visit can take an hour. If you are fitting work around this, fit it around the visit.

What the tiredness looks like, week by week. Not much at first. It builds from around the second or third week, and by the end it can be most of the day. Then, and this is the part nobody expects, it does not stop on the last treatment. It carries on for weeks and sometimes months afterward before it lifts. Somebody who is flat six weeks after the course finished is not relapsing. They are still recovering.

Wanting to sleep in the daytime is normal. The advice for this kind of tiredness is short walks most days rather than more rest, which is hard to do alone when you feel like that. Go with them. That is the single most useful thing on this list.

The skin rules need somebody keeping track of them. They are in the side-effects section above, and there are more of them than anyone remembers from one conversation. Ask the nurse to show you exactly which skin is in the treated area, and write the rules down. The one worth knowing by heart is the sun: a sunburn there can hold up their treatment.

The wig, if they want one, has to be bought early. It is ordered before the hair falls out, so the color can be matched, and that means acting weeks before anyone feels ready to. It is a good job to take off their hands. Ask whether a prescription would get insurance to cover it.

The steroid is the medicine to watch, and during radiation it moves more than it does anywhere else. Unlike after surgery, the dose can be changed several times while treatment is going on, usually because the treated area has swollen, and then brought down at the end. Ask for the current schedule in writing every time it changes. Steroids has the rest of what that medicine asks of you.

When to call the team the same day. Ask for their own version of this list before treatment starts. Generally, call if:

• A headache does not go away with acetaminophen.
• There is a seizure. But if it is their first ever, or it lasts more than five minutes, or one runs straight into another, or they do not wake up, that is an ambulance and not a phone call.
• They are throwing up, or feel sick and cannot keep anything down.
• Their vision changes.
• They are unsteady on their feet, more than before.
• They are confused, or their thinking has changed.
• They are mixing up words or struggling to find them.
• Any symptom they had before treatment comes back or gets worse.
• The skin in the treated area breaks, or gets much more sore.

The mask is worth asking about, even if they have not raised it. Some people find it very hard and do not want to say so. If they are quiet on the way in and quiet on the way home, it is worth asking straight out. There are things the team can do, and they are used to being asked.

And a date to put in your head. Around four to six weeks after the last treatment, some people go through a stretch of heavy drowsiness. It has a name and it is expected to pass. There is a section about it above. Read it before you get there, so it does not arrive as a shock.

Why am I having radiation again?

Being told about more radiation, months or years later, is a hard conversation. It is also a more complicated one than the first time.

Radiation can sometimes be given to an area that has been treated before. It usually needs a long gap first, and around a year or more is the sort of interval guidelines describe. Whether it is a good idea depends on the size of what has come back and how it is spread out.

Doctors do not agree about when this helps. European guidelines say the reasons for doing it are still unsettled, and that the evidence is not there to settle them. Nobody is keeping an answer from you. There is not a settled one to keep.

That is not a reason to assume it is off the table for you. It is a reason to ask directly: is a second course of radiation something you would consider for me, what would it be trying to do, and what else is on the list? A recurrence usually has more than one option attached to it, and radiation is one of several.

Who reads it, and how do I get the result?

Radiation is not a test, so there is no result at the end of the course. What there is instead is a scan, some weeks later, and a conversation about it.

While you are on treatment, someone from the team checks in with you at least once a week. That is where side effects get dealt with, and it is the right place to raise anything, even something small.

Ask before your last treatment: when is my next scan, and who tells me about it? Also ask whether the report will appear in your online records before anybody calls you. For many people it does, and reading it alone on a phone is a hard way to find out. If you would rather hear it from a person, say so.

The first scan after radiation can look worse and not be worse. Treatment itself causes changes that look like tumor growth on a scan. There is a word for it, pseudoprogressionpseudoprogression: A scan after treatment that looks worse because of the treatment itself. It is not because the tumor has grown. Telling the two apart can take another scan. See the glossary. Sorting it out often means waiting and scanning again. If your team says that is what they want to do, that is not them stalling. It is how the question gets answered.

What to ask your team

• What is my radiation meant to do: deal with cells left after surgery, treat the tumor as the main treatment, or ease symptoms?
• How many sessions, over how many weeks, and how far do I have to travel?
• Can I drive myself to treatment?
• What will you do about the mask if I find it hard?
• Will I lose my hair, where, and will it grow back?
• Am I likely to need a steroid, and who adjusts the dose?
• What should make me call you the same day?
• What are the late effects for the area you are treating, and how will you check for them?
• Will my hormone levels be checked afterward?
• If I am having whole-brain radiation, can it be planned to avoid the memory part of my brain, and should I be on memantine?
• Could this affect my ability to have children, and who do I talk to about it before we start?
• When is my first scan after treatment, and who will go through it with me?

Where to go next

• Brain surgery: what happens, and what comes after for the operation many people have before radiation.
• Your MRI scan for the scan that plans this treatment and the ones that follow it.
• Follow-up scans, and what the results mean for pseudoprogression, radiation necrosis and the words on a follow-up report.
• Waiting for your pathology results if you are still waiting to hear what the tumor is.
• Your pathology report, part by part once the document arrives.
• The words on your gene results for 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, MGMTMGMT promoter methylation: MGMT is a gene whose protein repairs damage to a tumor's DNA. Methylation turns it down. Your report says how much, and your team uses that when they choose chemotherapy. The line between high and low is not settled. See the glossary, 1p/19q1p/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 and the rest.
• Get help now if you need to talk to a person today.