Questions to Ask About Brain Cancer
For someone just told they have a brain tumor or brain cancer, or the family member who goes to the appointments, with questions for the neurosurgeon, the neuro-oncologist and the radiation team. They are grouped the way the decisions arrive: the diagnosis (type, grade and markers), surgery, radiation and chemotherapy, second opinions and trials, daily life with seizures, steroids, driving and work, and follow-up scans. Under each question is a note on the answer to hope for, the one to press on, or what to do next, and the list is something to take to your own doctors, not medical advice.
The questions
Each question, and why to ask it
Diagnosis
Is this a tumor that started in my brain, or cancer that has spread there from somewhere else?
Why ask it
The two go down different paths: a tumor that spread from the lung or the breast is handled as that cancer, and one that began in the brain is not. If nobody can say yet, find out which test will settle it, usually a scan of the body or the tissue itself, and when it is due.
What is the exact name of the tumor, and is it cancer?
Why ask it
'Brain tumor' covers dozens of types, and some are not cancer at all, though a benign one can still need treating because of where it sits. Have the full name written down as the pathology report gives it, since 'a glioma' or 'a mass' is too broad to read up on or to take to a second doctor.
What grade is it, on the scale of 1 to 4, and is there a stage as well?
Why ask it
Tumors that begin in the brain are usually given a grade for how quickly the cells look likely to grow, and not the stage number people know from other cancers. Write the grade next to the name. If it was judged from a scan and not from tissue under a microscope, treat it as an estimate until the report is in.
Which molecular markers were tested, such as IDH, MGMT and 1p/19q, and what do my results mean?
Why ask it
These lab findings are now part of how many brain tumors are named, and they can bear on which treatment is offered and how the outlook is discussed. They often arrive well after the first report, so ask which are back and which are pending. A plan made before they land may be adjusted, and it is easier to hear that today than later.
Where in the brain is it, and what does that area do?
Why ask it
Have the doctor bring up the MRI and point: which side, which lobe, how close to the areas for speech, movement or sight. It explains the symptoms you have already had and shows which abilities the surgeon will be working to protect. A phone photo of the screen, if the doctor agrees, helps when you explain it at home.
Is the diagnosis based on tissue, or only on the MRI so far?
Why ask it
A scan can strongly suggest a type, but the name, grade and markers come from a sample taken at biopsy or surgery. If you are being asked to decide something before any tissue exists, ask how confident the team is in the scan reading and what else it could turn out to be.
Is the aim to remove it for good, to hold it back for as long as possible, or to ease symptoms?
Why ask it
Many brain tumors are treated as something to control and not something to cure, and doctors do not always say so unless asked. Knowing the aim changes how much risk to speech or memory seems worth taking. If the reply is 'too early to say', ask which result will decide it.
What are you recommending, step by step, and which parts could change once the pathology is back?
Why ask it
For one tumor the plan is an operation and then scans, and for another it is an operation, weeks of radiation and months of tablets, so get yours as a sequence with rough dates. Have the doctor mark which steps are firm and which are waiting on the grade or the markers. Then find out what they considered and set aside, which shows whether there was a real choice to make.
How quickly does this kind of tumor tend to grow, and how soon does something need to happen?
Why ask it
Some brain tumors are watched for years and others call for an operation within days, and from the inside both feel like emergencies. Ask for the window as a number of days or weeks. With that number you can judge whether another opinion, or a week to arrange work and family, is affordable.
What is the outlook for this type and grade, and what about me makes the usual figures fit or not fit?
Why ask it
Say first whether you want numbers or only what to plan for, because the doctor cannot guess. Survival tables for brain tumors mix people of very different ages, many of them diagnosed before tumors were sorted by marker. The part to write down is which of your own facts, such as your age, your markers and how much the surgeon could take out, pull you toward the better or the worse end.
Did anything I did bring this on, and do my children or siblings need to be checked?
Why ask it
Doctors can seldom point to a cause for a brain tumor, so bring up whatever you have been blaming, whether the phone, an old head injury or stress, and let yours answer it directly. On the family side most people are told no. Mention any relatives who had brain tumors, or several cancers at young ages, since that is what would prompt a referral to a genetic counselor.
Surgery
Can the tumor be removed, and if so, all of it, most of it, or only enough for a biopsy?
Why ask it
Each of the three is a different operation with a different purpose. If the surgeon says it cannot be fully removed, ask whether that is because of where it is, how it threads into normal brain, or your general health. Location is the reason on which another surgeon is most likely to see it differently.
If some of the tumor has to stay behind, what does that mean for the rest of my treatment?
Why ask it
Surgeons often leave a part that is wrapped around something you need, and that is a judgment in your favor, not a failure. Listen for how the remainder will be dealt with, whether by radiation, drugs or watching, and how the team will measure what is left.
Which abilities are at risk from this operation: speech, movement, vision, memory or personality?
Why ask it
Push for the ones that sit near your tumor and a rough likelihood for each, in place of the general list on a consent form. Then say what you could least bear to lose, whether that is your speech, your right hand or your work, because a surgeon who knows can plan how far to go with that in mind.
Would you map my brain before or during surgery, or operate while I am awake?
Why ask it
Functional MRI, stimulation mapping and awake surgery are ways of finding the speech and movement areas so they can be avoided. They are offered for tumors in certain places and are not needed for others. If the surgeon says no, ask whether that is because your tumor does not call for it or because this hospital does not do it.
How many operations on tumors like mine, in this part of the brain, do you do in a year?
Why ask it
A neurosurgeon may spend most of the week on spines and see a tumor like yours rarely. Someone for whom this is routine will answer without taking offense. A small number is a reason to ask where the nearest brain tumor center is and whether they would refer you.
What will I be like in the first days after surgery, and which problems usually fade as the swelling goes down?
Why ask it
Weakness, muddled words or confusion can appear after the operation and ease over days or weeks, which is frightening if nobody warned the family. Have the surgeon separate what is expected and temporary from what would worry them. Whoever will be at the bedside should hear this answer too.
When will you scan after the operation, and what will that scan tell us?
Why ask it
Many centers do an MRI soon after surgery to see how much tumor is left before healing changes the picture. Ask when it will be done and which doctor shows it to you. Later scans are compared with that one, so keep the date and the written report.
How long will I be in the hospital, and will I need speech, physical or occupational therapy afterward?
Why ask it
Get the stay in nights and the therapy as a plan with a name against it, since rehabilitation that is 'arranged later' tends to start late. If a spell in a rehabilitation unit is possible, ask what would decide it. How it is booked and paid for differs by hospital and insurer, so have the discharge planner on the ward explain it before you go home.
Radiation and chemo
Will I need radiation after surgery, how soon would it start, and how many weeks does it run?
Why ask it
The start usually waits for the wound to heal and the pathology to come back, so there is a gap that can feel as if nothing is happening. Ask for the planned start, the number of sessions and whether a shorter course is ever given to someone of your age and health. Then count the travel, because daily visits for weeks are the part a family has to organize.
What will the weeks of radiation and chemotherapy feel like, and when is the tiredness at its worst?
Why ask it
Tiredness is the effect people having brain radiation mention most, and it can build through the course and hang on after the last session, so ask what pattern this team sees. Get the short list for the drug as well: nausea, constipation, low blood counts, and which of them needs a same-day call. With the hardest weeks marked on a calendar, the family can plan the driving and the school runs around them.
How much of my brain will be in the radiation field, and what could that do to my memory and thinking in the years ahead?
Why ask it
The short-term effects get described readily and the slow ones less so. Ask which structures the plan is designed to spare and what changes people notice a year or more on. Some teams test memory before treatment so there is something to compare with later, and it is fair to ask whether yours does.
What happens at the planning session, and what is the mask for?
Why ask it
A mesh mask is molded to your face so that your head sits in the same position at every session, and some people find it hard to tolerate. Say so now if tight spaces bother you. Centers have ways of helping, from a practice run to something to calm you, and they would rather know before the first treatment than during it.
Is proton therapy, or any other type of radiation, worth considering for me?
Why ask it
Protons are available at a limited number of centers and are suggested for some tumor types and ages more than others. The answer you want explains what it would spare in your case, or why it would add nothing. If it means traveling, ask who makes the referral and how coverage works where you live.
Will I lose hair where the radiation goes in, and is it likely to grow back?
Why ask it
Hair loss from brain radiation follows the beams, so it tends to come in patches, and regrowth depends on the dose that part of the scalp receives. The radiation team can show you on the plan where to expect it. Their advice on washing and on sun on the treated skin is the advice to follow.
Which chemotherapy do you recommend, how do I take it, and do my markers say how well it is likely to work?
Why ask it
For many gliomas the drug named is temozolomide, a capsule swallowed at home, which makes the instructions on timing, food, anti-nausea tablets and blood tests matter more than they would in an infusion chair. Ask how your MGMT or other results figured in the recommendation. If the doctor expects only a modest benefit, you should hear that before weighing the side effects.
If I might want children later, what has to be arranged before radiation or chemotherapy begins?
Why ask it
Bring it up even if you are undecided, because storing eggs, sperm or embryos, where it is offered, has to fit into the short gap between surgery and the first dose. The other half of the answer is how long a pregnancy should be avoided, for you or a partner, during and after the drugs. What storage costs and who pays varies, so get the local answer.
Is there a targeted drug for a mutation in my tumor, and can I get it where I live?
Why ask it
For a few markers there are drugs aimed at them, and for most there are none yet, so a plain no is common. If one exists, find out whether it is approved for your tumor type in your country, whether it would be given now or held in reserve, and what you would pay.
Would tumor treating fields, the device worn on the scalp, be offered for my tumor?
Why ask it
It is a set of pads worn on a shaved head for most of the day, offered for some glioblastomas in some countries and not at all in others. What matters is how much it is expected to add for you and whether you could live with wearing it. Skip this one if your tumor is a different type.
If my tumor is slow growing, is watching it with regular scans a reasonable choice for now?
Why ask it
For some low-grade tumors, holding off on radiation or drugs is a real plan with its own schedule, and for others it is not advised. Ask what the team would be watching for and what change would end the waiting. If the doctor rules it out, the reason shows you what is driving the urgency.
Opinions and trials
Have all my specialists looked at my scans and pathology together, and which of them is in charge of the plan?
Why ask it
Brain tumor care is split between a neurosurgeon, a neuro-oncologist, a radiation oncologist and often a neurologist, and a joint meeting, which many hospitals call a tumor board, is where they settle on one plan. If your case has not been to one, find out when it will go and whether you will be told what was said. Then get the name and direct number of the nurse or coordinator who answers questions between visits.
Would you send my scans and slides to a specialist brain tumor center for a second opinion?
Why ask it
It is most worth doing when you have been told the tumor cannot be operated on, when the type is rare, or when this hospital treats few brain tumors. Many centers will review the images without you traveling, and can have the slides read again by a neuropathologist. A doctor who is comfortable with the request will often suggest where to send them.
How long can I safely take to get another opinion before treatment has to begin?
Why ask it
Get it as a date. For a fast-growing tumor the honest answer may be a few days, in which case ask whether surgery could go ahead here with the second opinion sought on what comes after it. For a slow one there may be weeks, and nobody should hurry you.
Is there a clinical trial I should hear about before surgery or before radiation starts?
Why ask it
Some brain tumor trials are closed to anyone already operated on or already started on radiation, so the question has a deadline. 'None here' is not the same as 'none', and the follow-up is who would know about other centers. Brain tumor patient organizations in many countries help with the search.
Will some of my tumor tissue be stored, and how, in case a trial or a later test needs it?
Why ask it
Certain trials and tests need tissue kept in a particular way, frozen for example, and that has to be arranged before the operation. Ask what this hospital does as routine and whether anything more is possible. If only the standard sample is kept, at least you learn it before the chance has passed.
Daily life
Am I at risk of seizures, and do I need medicine to prevent them?
Why ask it
Whether anti-seizure medicine is given before any seizure has happened differs between doctors and tumor locations, so ask for the reasoning in your case. If you are prescribed one, find out how long you stay on it and which side effects, drowsiness and mood changes among them, to report. Stopping it is a decision for the prescriber, never a quiet one of your own.
What should the people I live with do if I have a seizure?
Why ask it
Have the doctor or nurse give your household plain steps: what to do, how long to wait and when to call an ambulance. A seizure can also be a blank stare, a twitching hand or a spell of lost words, so ask what yours might look like. Keep the written instructions where a visitor could find them.
Which symptoms mean I call the clinic, and which mean I go straight to the emergency room?
Why ask it
You want two short lists in the doctor's own words. A headache that is worse lying down, repeated vomiting, new weakness, growing confusion or a first seizure are the kinds of things teams name, but your team's list is the one that counts. Carry a card with the tumor's name and your current medicines, since emergency staff will want both at once.
Why am I on steroids, what will they do to my sleep, mood and appetite, and how do I come off them?
Why ask it
Dexamethasone is the steroid most often given to bring down swelling around a brain tumor, and it can leave people wired, hungry and short-tempered, which families sometimes mistake for the tumor. Ask for the dose schedule in writing, the step-down included, because these are not tablets to stop on your own. If you have diabetes, ask who is watching your blood sugar.
Am I allowed to drive, and who decides when I can start again?
Why ask it
The rules depend on your state or country and on whether you have had a seizure, and in some places the doctor or the licensing agency has the final say. Ask what applies where you live and have the answer noted in your record. Lost vision to one side or slowed reactions can count as much as seizures, so ask whether you need to be tested.
Can I keep working, and are there parts of my job I should stop doing?
Why ask it
Describe the job in detail: screens, ladders, machinery, driving, responsibility for other people's safety. The answer usually changes by phase, with time off after surgery and a tired stretch that can outlast the last radiation session. Leave, disability pay and what an employer must be told depend on where you live and work, so take the dates to whoever handles that.
What changes in thinking, memory or personality should we expect, and who can assess them?
Why ask it
The person with the tumor is often the last to notice these, which is why this question belongs to the family member as much as to the patient. Ask whether a neuropsychologist can test now and again later, and what help exists for the problems found. If you are the companion and have seen changes, say so, or hand the doctor a note.
Is it safe for me to fly, swim, take baths, drink alcohol or exercise hard?
Why ask it
Most of these come down to what would happen if a seizure struck at that moment, plus the timing after surgery for flying. Go through the ones that are part of your life and get a yes, a no or a 'not alone' for each. Travel insurance after this diagnosis works differently by country and insurer, so check before you book.
Should I change what I eat, and is it safe to take supplements, cannabis products or anything else alongside treatment?
Why ask it
People with a brain tumor get sent diets, oils and vitamins by everyone who loves them, and some of those can interfere with chemotherapy or with anti-seizure medicine. Bring the list, or the bottles, and have the doctor or pharmacist go through it line by line. If steroids have you eating around the clock, this is also the moment to ask for a dietitian.
Who can I talk to when the fear gets too much, and who looks after the person looking after me?
Why ask it
Caring for someone whose memory or temper has changed is a different load from driving them to appointments, and the caregiver often needs a person of their own to call. Get a name for each of you: a counselor, a social worker, a support group for brain tumors in particular. If the hospital has a supportive or palliative care service, find out what it does here and at what point your team calls it in.
Should I choose someone now to speak for me if the tumor ever affects my speech or judgment?
Why ask it
A brain tumor can affect speech and judgment in a way most illnesses do not, so naming who would decide for you is ordinary planning and not a bad sign. The forms and their names differ by state and country, and the team's social worker can show you the ones in use where you live. Talking it through with the person you choose matters more than the paper.
What am I likely to pay for the scans, the operation and the drugs, and who checks what my insurance will approve?
Why ask it
The surgeon seldom knows the figures, and most centers have someone whose job it is, under a title like financial counselor or patient navigator. Brain tumor care can mean one MRI after another for years, so ask how each scan gets approved and what happens when an approval is late. What you pay depends on your country, plan and employer, so bring the plan details with you.
Follow-up
How often will I have MRI scans, and for how many years?
Why ask it
The gap between scans depends on the type and grade and usually lengthens with time, and for many types the scans go on for years. Get this center's schedule in writing, and ask whether they can be done on the same scanner each time, which makes them easier to compare. Book the next one before you leave.
How and when will I get each scan result, and who explains it?
Why ask it
The days between a scan and its result are hard on everyone in the house, so ask whether the clinic visit can be the same day or the next. If reports reach a portal before the doctor calls, decide now whether you will open them. MRI reports are written for other doctors, and their wording can alarm people when nothing has changed.
After radiation, can a scan look worse without the tumor having grown?
Why ask it
In the months after treatment, swelling and other treatment effects can mimic growth on an MRI, which doctors sometimes call pseudoprogression. Knowing that ahead of time keeps one bad-looking scan from being taken as the end of the plan. Ask how the team tells the two apart, often with a repeat scan some weeks later or a more specialized one.
Between scans, how do I tell an ordinary headache from one I should report?
Why ask it
After this diagnosis no headache feels like an ordinary headache, so get the doctor's rule. It should be a short list tied to where your tumor is, such as trouble finding words, a weak hand or a change in vision, with how many days of it warrant a call. Check which number to ring once you are no longer in active treatment.
If the tumor grows back, what would the options be then?
Why ask it
Asking once, early, saves you from wondering through every scan. You are after an outline: whether a second operation, more radiation, a different drug or a trial might be possible. Stop the doctor there if you would prefer not to go further today.
What long-term effects of treatment should I be checked for in the years ahead?
Why ask it
Radiation near the pituitary gland can affect hormones over time, and memory, hearing or vision may need watching depending on what was treated. Ask which checks apply to you, how often, and whether the brain tumor team or your regular doctor orders them. A check that sits between two offices is the one that gets missed.
Getting answers from a brain tumor team
Practical guidance for the conversation itself
What to bring, and who should come
Bring the scans themselves
Ask the hospital that did your MRI for the images, on a disc or through its sharing system, along with the written reports and any pathology report. A neurosurgeon or a second-opinion center reads the pictures and not the summary, and a visit without them can end with nothing decided.
Keep a dated log of symptoms
Note each headache, lost word, odd smell, weak limb or blank spell, with the day and how long it lasted. Include what the person beside you saw, since someone who has had a seizure may not remember it. Doctors lean on this record when they talk about medicines and driving.
Agree who asks and who writes
A brain tumor can make it harder to follow fast speech, find words or hold on to what was said, and so can steroids and plain shock. Agree before you go in who asks and who writes. If you would like to record the visit, ask at the start, because whether that is allowed varies from place to place.
Tell the doctor whether you want figures
Some people want survival figures at the first visit and some never do. Tell the doctor which you are, and tell your companion too, so that nobody asks on your behalf a question you were not ready for.
Choose questions by where you are
Before an operation, the first five under Diagnosis, the Surgery group and the trial and tissue questions come first, because some of those doors close once the surgeon has operated. When the pathology is back, turn to the markers and to Radiation and chemo. Daily life and Follow-up can go to the nurse by phone or wait for a later visit.
Which doctor answers what
The neurosurgeon
How much can come out, which abilities are at risk, what the first days after the operation look like and what happens to the tissue. Questions about drugs and radiation usually get a better answer from the doctors who give them.
The neuro-oncologist
The name, grade and markers, drug treatment, trials, and the plan as a whole, including the scans afterward. Some hospitals have no neuro-oncologist. Where that is so, find out who fills the role and how many brain tumors they treat in a year.
The radiation oncologist
Which part of the brain is treated, the number of sessions, the mask, hair and skin, tiredness, and the slow effects on memory and hormones. Ask to see the plan on the screen once it has been drawn up.
The nurse or coordinator
The steroid schedule, prescriptions, who to call after hours, what to do about a missed dose, and the booking of scans and therapy. This is usually the person who can be reached the same day, so their direct number is the one to save.
Whoever manages the seizure medicine
It may be a neurologist, the neuro-oncologist or the surgeon. Find out which, because questions about dose changes, side effects and the rules on driving belong with that person and can otherwise bounce between offices.
The social worker or financial counselor
Leave from work, benefits, costs, transport to daily radiation, the paperwork that names who decides for you, and support for the person doing the caring. What you are entitled to depends on your country, state and employer, so have them explain the local rules.
Brain tumor terms to have explained
Grade, not stage
A grade from 1 to 4 describes how the cells look and how quickly they are likely to grow. It is not a measure of how far the tumor has traveled, which is what stage means in other cancers. If someone gives you a stage, ask whether they mean the grade.
Glioma, astrocytoma, oligodendroglioma, glioblastoma, meningioma
Glioma is a family name for tumors that arise from the brain's supporting cells, and astrocytoma, oligodendroglioma and glioblastoma are members of that family. A meningioma grows from the lining around the brain, is a separate kind of tumor and is often benign. Ask which one yours is and have it spelled out.
IDH, MGMT and 1p/19q
These are results of tests on the tumor itself, not on the genes you inherited. Each can affect the name of the tumor, the treatment offered or the way the outlook is discussed. Have the doctor take your three results one at a time and say what each one changes.
Biopsy, debulking and gross total resection
A biopsy takes a sample. Debulking, or subtotal resection, removes part. Gross total resection means the surgeon removed all the tumor that could be seen, which is not always the same as every cell being gone, and is why more treatment may still be advised.
Enhancement and edema
On an MRI report, enhancement is the part that lights up after contrast dye is injected, and edema is swelling in the brain around the tumor. A change in either is not always a change in the tumor. Have the doctor point to both on the screen.
Progression and pseudoprogression
Progression means the tumor has grown. Pseudoprogression is the name for a scan that looks worse after radiation because of the treatment itself. When a report mentions either, ask which one the team believes it is and how they will confirm it.
Mistakes that are easy to make with a brain tumor
Looking the tumor up before the markers are in
Figures found under a broad name such as glioma can describe a very different tumor from yours. Wait for the full name with its grade and markers, then ask the doctor which sources they would trust for that exact diagnosis.
Opening the MRI report alone
Reports list every finding in technical language, and a sentence that sounds grave may describe something unchanged since the last scan. If your hospital releases reports to a portal straight away, agree at home whether anyone reads them before the appointment.
Answering for someone who is slow to find words
When speech is slow, relatives and doctors drift into talking across the person the visit is about. Leave time for them to answer, and ask the doctor to address them. A companion who has something difficult to report can ask the nurse for a few minutes, or pass a note.
Changing the tablets without a call
Steroids can leave people sleepless and ravenous, and seizure medicine can leave them foggy, so the pull to skip a dose or stop is real. Both are prescribed on a schedule that the team steps down on purpose. If the side effects are the problem, ring the prescriber, say so, and let them change the dose.
Assuming you can drive because nobody said otherwise
Driving often goes unmentioned until the patient brings it up. The rules after a seizure or a brain operation are set by each state or country, so ask what applies to you and have the answer written in your record. Settle who drives to daily radiation before the first session.
Putting changed behavior down to character
Irritability, flatness or poor judgment can come from the tumor, the swelling or the steroids. Describe what you are seeing to the team in specifics, with dates. Sometimes a dose or its timing can be adjusted, and sometimes simply knowing the cause makes it easier to live with.