Questions to Ask Your Oncologist About Lung Cancer
Lung cancer is usually planned by more than one specialist, and the plan often turns on a biomarker report, so these 53 questions are written for the patient, or the relative keeping notes, to take to the oncologist across the first few appointments. They run in the order the decisions arrive: type, stage and the overall plan, then biomarker testing, surgery and radiation, drug treatment, side effects and breathing, and finally trials, outlook and follow-up scans. The notes point out what to listen for in each answer and what to ask next; they are not medical advice, and anything about cost or coverage has to be checked where you are treated.
The questions
Each question, and why to ask it
Type, stage and plan
Is this non-small cell or small cell lung cancer, and which subtype?
Why ask it
The two are treated so differently that most of what you read online applies to only one of them. Get the subtype too, such as adenocarcinoma or squamous cell, and have the full name on paper before you search anything tonight.
What stage is it, and which test results is that stage based on?
Why ask it
A stage given before the PET scan, the brain scan or the lymph node sampling is a working stage, and it can move in either direction. Small cell is often described as limited or extensive instead of by number, so check which wording your report uses and which results are still to come.
Has it reached the lymph nodes in the middle of my chest, and how was that checked?
Why ask it
In lung cancer those nodes often decide whether an operation is offered, so 'nothing shows on the PET' and 'we took samples' are answers of different strength. When the nodes have only been judged from a scan, the follow-up is whether a needle sample through the airway is planned.
With the stage as it stands today, are you treating to cure this or to control it?
Why ask it
Have the oncologist pick one word, because every later choice about side effects is weighed against it. A worrying answer is a list of treatments with no aim attached. If the aim is control, find out what the team would call a good result a year from now.
What are the treatment options for my type and stage, and which would you start with?
Why ask it
A full answer names what was considered and set aside as well as what is recommended: surgery, radiation, drug treatment or some combination. If you hear only one option, ask what ruled the others out, since that reason is what a second opinion would test.
Do I need an MRI of my brain and a PET scan before we settle the plan?
Why ask it
These look for spread that a chest CT cannot show. Being told you can skip one is fine as long as it comes with a reason tied to your stage, and a reason you have on paper is one you will not be turning over at three in the morning.
How fast does this type tend to move, and by what date should treatment begin?
Why ask it
Small cell lung cancer tends to grow quickly and teams usually want to start soon, while many non-small cell cancers leave room for the tests to finish. Get the answer as a date, then check that the wait for biomarker results fits inside it.
Has a group of lung cancer specialists looked at my case together?
Why ask it
Plans for this cancer are often made with a chest surgeon, a radiation oncologist, a medical oncologist and a lung doctor in one meeting, sometimes called a tumor board. A good answer gives the date your case was or will be discussed. Where no such meeting exists, find out which of those specialists you will see in person.
Does it matter for testing or treatment whether I smoked, and for how long?
Why ask it
People who never smoked get lung cancer too, and certain gene changes turn up more often in them, so the answer can affect how hard the team looks for one. It should come without judgment whichever way your history runs. A lecture in place of an answer tells you something about the fit.
How do my other conditions, such as COPD or heart disease, change which treatments are safe for me?
Why ask it
Plenty of people with lung cancer also have another lung or heart condition, and it can rule out an operation or reshape a radiation plan. A reassuring answer mentions your lung doctor or cardiologist by name. Bring the names of your inhalers and heart medicines to make it easy.
Biomarkers
Which biomarkers has my tumor been tested for, and are all the results back?
Why ask it
This testing matters most in non-small cell lung cancer. Get the list by name, such as EGFR, ALK, ROS1, BRAF, KRAS, MET, RET and PD-L1, and tick off which have come back. 'We tested for the main ones' is the answer to press on, since a pending result can change the first drug you are given.
Was the biopsy sample big enough for every test you want, or will I need another?
Why ask it
Lung biopsies are small, and the tissue can run out before the gene tests are finished. Find out whether the lab ran one broad panel or one gene at a time, and who tells you if the sample fell short. Hearing it now beats hearing it three weeks in.
Should we wait for the biomarker results before I start any drug treatment?
Why ask it
For some people the first treatment is a pill matched to a gene change, and oncologists often prefer to know that before choosing anything else. An oncologist who wants to begin sooner should be able to say what makes waiting risky in your case and how many days away the results are.
Could a blood test look for the same markers if there is not enough tissue?
Why ask it
You may hear it called a liquid biopsy. It can spare you a second procedure, but finding nothing in blood is less certain than finding nothing in tissue, so ask what the team would do next if it came back empty.
What is my PD-L1 result, and how much does it steer the choice of immunotherapy?
Why ask it
It is reported as a percentage, so write the number down beside the date. The oncologist should be able to say whether yours argues for immunotherapy alone, with chemotherapy, or not at all. A result that was never ordered deserves a reason.
Is this gene change only in the tumor, or is it something inherited that my family should know about?
Why ask it
The markers tested in lung cancer are usually changes inside the cancer cells and were not passed down. Having that said in plain words settles a worry relatives tend to carry quietly. Where the oncologist does suspect an inherited cause, a genetic counselor is the person to see next.
If the cancer starts growing again later, would you test it again?
Why ask it
Tumors can pick up new changes while on treatment, and a fresh biopsy or blood test sometimes points to a different drug. Listen for whether the team treats testing as a single event or as something it comes back to.
Surgery and radiation
Is surgery an option for me, and if not, what exactly rules it out?
Why ask it
The reason is usually one of three: how far the cancer has spread, where the tumor sits, or whether your lungs and heart could take the operation. Each leads somewhere different, and when the reason is fitness, a second surgical opinion sometimes changes the answer.
How much lung would be removed: a wedge, a segment, a lobe or the whole lung?
Why ask it
Have the surgeon draw it. The amount taken shapes how breathless you may be afterward, so ask what they expect you to manage a year later, in your terms: the stairs at home, a walk uphill, your job.
What do my breathing tests say about how I would cope with less lung?
Why ask it
Lung function is normally measured before anyone decides on an operation, and the surgeon can give you a predicted figure for afterward as well as today's. Borderline numbers are the moment to bring up a smaller operation or focused radiation.
Would the operation be done through small cuts with a camera or a robot, or by opening the chest?
Why ask it
The approach changes the nights in the hospital and the weeks of soreness more than it changes what is removed. Two things to find out: which method this surgeon uses most, and what would make them switch to an open operation partway through.
Who would do the operation, and how many lung cancer operations do they do in a year?
Why ask it
Your oncologist can answer the first half, and the surgeon should answer the second without hesitating. A vague figure, or one that lumps in every kind of chest operation, is your cue to find out where else in the region lung resections are done.
Would I have drug treatment before the operation, after it, or both?
Why ask it
Chemotherapy, immunotherapy or a targeted pill is often given around lung surgery, and anything meant to come first has to be decided before the operation is scheduled. Check that the surgeon and the oncologist give you the same answer. If they differ, ask them to speak to each other and call you.
If I cannot have surgery, could focused radiation treat the tumor on its own?
Why ask it
For a small tumor, a short course of tightly aimed radiation, often called SBRT or SABR, is sometimes offered as the main treatment. Whether yours suits it comes down to size and position, so ask about both, and whether this center does it or would send you elsewhere.
If I have radiation and chemotherapy together, what does the schedule look like week by week?
Why ask it
Combined treatment often means a radiation visit every weekday for several weeks with chemotherapy on top, and the side effects tend to build as the weeks go on. Get the calendar on paper, then ask what usually forces a pause and what the team does to avoid one.
What will radiation to my chest do to my swallowing and to the healthy lung around the tumor?
Why ask it
Painful swallowing during treatment and inflammation in the lung afterward are the two effects to hear about ahead of time. Timing is the useful detail, since the lung one can arrive weeks after the last session and pass for a chest infection.
Since mine is small cell, would you recommend preventive radiation to the brain or regular brain scans instead?
Why ask it
Skip this one unless your type is small cell. Preventive brain radiation and close watching by MRI are both in use, and centers lean different ways. The answer should cover what each would cost you in memory and energy and why the oncologist favors one for you.
If it has spread to the brain or the bones, how will each of those spots be treated?
Why ask it
Some are given focused radiation, some are left to drugs that reach them, and some are simply watched. Go through them one by one with the oncologist, and leave knowing which symptoms, such as a new headache, weakness or bone pain, should be reported without waiting for the next visit.
Drug treatment
Which drugs are you recommending, and is each one chemotherapy, immunotherapy or a targeted therapy?
Why ask it
The three work differently, cause different side effects and are often combined. Have each name written beside its type, because 'the infusion' will not be enough when a pharmacist or an emergency doctor asks what you are on.
If my tumor has a gene change with a matching drug, is it a pill, and how long would I take it?
Why ask it
Targeted drugs are commonly pills taken every day for as long as they keep working, which is a different life from cycles in an infusion chair. Two practical things to settle at the start: what happens after a forgotten dose, and which foods, supplements or stomach medicines get in the way of the drug.
Is immunotherapy right for me, and does anything in my health argue against it?
Why ask it
Mention any autoimmune condition, organ transplant or regular steroid use, since these weigh on the decision. If you also carry a gene change that has a targeted drug, ask why immunotherapy is or is not in your plan and in what order.
How many cycles of chemotherapy will I have, and what happens when they finish?
Why ask it
Some plans stop after a set number. Others carry on with a lighter maintenance treatment for as long as it helps. Knowing which one you are on keeps the last planned cycle from feeling like a finish line when it is not.
When is the first scan to see whether treatment is working, and what would you count as working?
Why ask it
A tumor that shrinks is one kind of success and a tumor that has stopped growing is another, so agree on the words before the scan and not after. With immunotherapy, ask too whether a first scan can mislead and how the team allows for that.
What is the second plan if the cancer grows through this one?
Why ask it
The point is not a forecast, only to hear that a next step exists and has a name. On a targeted pill, the cancer often finds a way around the drug in time, so find out what the team would test for when that happens.
Will my insurance or health system pay for the biomarker tests and the drugs you are recommending, and who checks that before I start?
Why ask it
Coverage depends on your country and your plan, so the person who knows is usually a financial counselor, a pharmacist or a nurse navigator, not the oncologist. In some systems a daily targeted pill needs its own approval before the pharmacy will release it, so have that started the day the drug is chosen.
Side effects and breathing
What will this chemotherapy feel like in the days after each infusion, and what do you give ahead of time to prevent the worst of it?
Why ask it
The answer depends on the drugs, so have it given for your regimen and not for chemotherapy in general: nausea, tiredness, numb fingers, hair, the days when infection risk is highest. Leave with the fever reading that means a call at any hour and the number that is answered at night.
What does it look like when immunotherapy causes trouble, and how early would I notice?
Why ask it
Immunotherapy can set the immune system against healthy tissue, such as the skin, the bowel, the thyroid or the lungs, and it can happen months in. These effects are handled differently from chemotherapy effects, so get the list in writing and show it to any other doctor who treats you.
What should I expect from a targeted pill, such as a rash or diarrhea, and when do I report it?
Why ask it
The effects depend on the drug, and many are managed with a cream, a lower dose or a short break without giving up the treatment. Settle one thing before the first pill: whether you keep taking it or stop if a side effect starts and nobody answers the phone.
How do I tell a treatment side effect in my lungs from the cancer or a chest infection?
Why ask it
A new cough, more breathlessness or a fever could be any of the three, and nobody expects you to work out which. What you need from the oncologist is the rule: which change means a call the same day, and to what number.
What can be done about my breathlessness and cough now, while treatment gets going?
Why ask it
A good answer names things: an inhaler, something for the cough, breathing techniques, a handheld fan, oxygen if a measurement supports it. 'It should ease once treatment works' leaves you with nothing for tonight, so ask again.
If fluid builds up around my lung, how is it drained, and what happens if it comes back?
Why ask it
Drawing it off with a needle can ease breathing the same day, and fluid that keeps returning has longer-lasting answers, such as a small drain you look after at home. Know who does the procedure and how fast you can be seen when the tightness returns.
What should I do if I cough up blood?
Why ask it
Get an exact rule before it ever happens: how much is a phone call and how much is an emergency. A streak in the phlegm and a mouthful are handled very differently, and that is not a judgment to make alone at night.
Would pulmonary rehabilitation or a physical therapist help me keep my breathing and strength up?
Why ask it
Supervised exercise and breathing training are offered around lung surgery in some centers and during drug treatment in others. Whether a program exists near you and who pays for it vary by region and by plan, and the quickest way to learn is to request the referral and see what comes back.
Is there a symptom team here for pain, breathlessness and sleep, and can I see them from the start?
Why ask it
It may be called palliative care or supportive care, and the first name frightens people into saying no. In many hospitals this team works beside the oncologist from the early weeks and has nothing to do with stopping treatment, so have its role here described before you decide.
If I am still smoking, does stopping now make a difference, and what help can you give me?
Why ask it
Most oncologists will say yes, so judge the answer by what follows it: medication, a counselor, a phone line, a follow-up date. If all you get is the instruction, ask who at the hospital runs the quit-smoking program and how you sign up.
People keep asking whether I smoked. Who can I talk to about the guilt or the anger?
Why ask it
Stigma comes with this diagnosis whether you smoked or not, and it keeps people from asking for help. Say it once to the nurse or the social worker. Many centers know of a lung cancer support group, where nobody asks that question.
Trials and outlook
Do my type, stage and markers fit any clinical trial, here or at a center I could travel to?
Why ask it
Lung cancer trials are often built around one gene change, so repeat the question once your biomarker report is in. Raise it before the first dose, because earlier treatment can close the door on some trials.
In that trial, would I get at least the standard treatment, and what extra visits or biopsies come with it?
Why ask it
The trial coordinator usually answers this better than the oncologist, so get that person's name. Take the consent form home, read it with someone, and have the team confirm that you could leave the trial and go back to regular care.
How do people with my stage and markers usually do on the treatment you are proposing?
Why ask it
Tell the oncologist beforehand how much detail you want: a general picture, a best and a usual case, or figures. Published numbers can be several years behind the drugs in use now, so ask how old the data behind any figure is and how closely it describes someone like you.
What is the chance it comes back after treatment, and where does it usually return?
Why ask it
This is for people being treated with the aim of cure. The 'where' is the practical half, because it tells you which symptoms to mention early and which ordinary aches you can let pass.
How often will I have CT scans after treatment, and for how many years?
Why ask it
Get the schedule in writing with who orders each scan, because follow-up often passes from one doctor to another and a scan can fall through the handover. Two more things belong on that page: how and when each result reaches you, and what the team does when a scan shows something small and unclear.
If treatment stops helping, or I decide I do not want more, what would my care look like then?
Why ask it
Asking early does not bring it closer. A good answer describes who would look after breathlessness and pain, where, and how you would reach them at night. What these services are called and who pays for them is different in every health system, so have the local version explained.
Which tests, referrals and decisions are still waiting, and who is chasing each one?
Why ask it
A lung cancer workup runs through several departments, and a gene result or a breathing test can sit unread unless somebody owns it. Go down the list aloud until every item has a name against it, and put the dates in your phone before you stand up.
Getting answers at a lung cancer appointment
Practical guidance for the conversation itself
Before the appointment
Bring the two reports
The pathology report and the biomarker report are what every later conversation rests on. Ask the clinic for copies ahead of the visit, read the first lines, and circle each word you do not know so the oncologist can explain it in the room.
Know which results are still out
Call the day before and ask whether the PET scan, the brain MRI and the gene tests have been reported. If the main ones are missing, ask whether the visit is still worth keeping or should move a few days, since a plan made without them is often remade.
Describe your breathing in everyday terms
Write down what you could do a month ago and what you can do now: one flight of stairs, the walk to the car, a full sentence without stopping. Add the cough, any blood, your weight and what wakes you at night. Specifics like these help a team judge what you could tolerate.
List everything you take
Inhalers, blood thinners, heart pills, vitamins and whatever you buy off the shelf all go on the list, with doses. Some interact with cancer drugs, and the list is hard to rebuild from memory in an exam room.
Choose your questions by where you are
At the first visit after diagnosis, the type, stage and biomarker groups matter most. Once a plan is on the table, move to the group for that treatment. Mark five or six and write the answers beside them.
Which specialist answers what
The medical oncologist
Drug treatment belongs here: chemotherapy, immunotherapy, targeted pills, the biomarker results and most questions about outlook. This is often the doctor who stays with you longest, which makes it the right appointment for finding out who coordinates everyone else.
The thoracic surgeon
Whether an operation is possible, how much lung would come out and what recovery involves are the surgeon's questions. An oncologist can tell you surgery is being considered, but the details should come from the person who would do it.
The radiation oncologist
Ask this doctor about the number of sessions, the area treated, the effects on swallowing and on the lung, and whether focused radiation is an option for you. If radiation is in the plan and you have not met one yet, ask when you will.
The lung doctor
A pulmonologist often did the biopsy and may go on managing breathlessness, inhalers, oxygen and fluid around the lung. Find out whether you are still under their care or have been handed over, because people assume one or the other and are sometimes wrong.
The nurse or navigator
Scheduling, results that have not arrived, side effects between visits and where to send a form usually go to a nurse or coordinator, who is easier to reach than any of the doctors. Get the direct number and the hours it is answered.
In the room
Give your companion one job
Whoever comes with you should be writing, not also trying to remember. Hand them the list and have them note drug names, dates and the answers to your marked questions. When you have to go alone, a relative on speakerphone can do the same job if the clinic allows it.
Ask before you record
Whether a visit may be recorded is up to the clinic and, in some places, the law, so raise it before you press the button. Many oncologists are glad to say yes. A recording lets you hear the stage and the plan again the next day, when more of it goes in.
Have the names written down
The subtype, the stage, the gene change and each drug should be on paper in the oncologist's or nurse's handwriting, or in the visit summary. Spelling matters, since several lung cancer drugs have names that look alike.
Ask to see the scan
Looking at the image while the oncologist points makes 'a spot in the right upper lobe' mean something. With the picture on the screen it is also easier to ask what is certain and what is only suspected.
Set the level of detail on outlook
Before any talk of outlook, tell the oncologist whether you want figures, a general picture, or nothing yet. The patient and the family member may want different things, and it is fine to ask for the two conversations to be had separately.
Finish by telling the plan back
Use the last two minutes to repeat the plan to the oncologist as you understood it: the next step, its date, and who books it. Any gap or mismatch shows up at once, while the person who can fix it is still in front of you.
Things that cost people time
Not asking whether the gene tests are in
People agree to a start date without knowing that a biomarker result is still at the lab. Ask every time a treatment is proposed whether the full report is back, and if it is not, what the team's reason is for going ahead or for waiting.
Assuming the departments talk to each other
Surgery, radiation, oncology and the lung clinic may keep separate schedules. When one doctor says another will call, ask for a date, and call the nurse or navigator if that date passes.
Leaving the second opinion too late
A second opinion is easiest before the first dose or the operation, and it is most useful when surgery has been ruled out or the hospital sees few lung cancers. Ask your oncologist how many days it could take without harming the plan, and how records are sent where you live.
Reading survival tables alone at night
Online figures often lump every stage, age and treatment era together. If you have read a number that frightened you, bring it to the appointment and ask the oncologist how it does and does not apply to you.
Playing down symptoms or smoking
People say they are fine because they fear treatment will be withheld, or say they have quit when they have not. The team can only plan around what it is told, and both breathlessness and smoking have help attached once they are out in the open.