Questions to Ask Your Doctor About Prostate Cancer
Written for a man who has just been told he has prostate cancer, and for the partner who will be sitting next to him when he sees the urologist or oncologist. The 50 questions are grouped in the order most men meet them: what the PSA, Gleason score and stage say, the choice between active surveillance and treatment, what surgery, radiation and hormone therapy each involve, side effects such as leaking and erections, what to check before deciding (time, second opinions, trials, cost), and follow-up. The notes say what a useful answer sounds like and what to do with a vague one; they are prompts for your own doctor, not medical advice.
The questions
Each question, and why to ask it
Results
What is my PSA level, and how has it moved over time?
Why ask it
Ask for every reading the office holds, with dates, not only the latest one. One number says less than the direction and the speed of the change, and the doctor should be able to say which of those they are watching in your case.
What is my Gleason score, and which Grade Group does that put me in?
Why ask it
These are two scales for one finding: how abnormal the cells looked under the microscope. Have the doctor write down the two numbers that add up to the score, because a 3+4 and a 4+3 are both called 7 and doctors do not read them as the same thing.
How many of the biopsy samples had cancer in them, and how much of each?
Why ask it
The pathology report lists each sample separately, with where it was taken and how much of it was cancer. If all you hear is 'a few were positive', ask for a copy and go through it line by line together, since every later recommendation rests on that page.
What stage is it, and is there any sign it has grown outside the prostate?
Why ask it
Listen for which part of the answer comes from the exam, which from the scan and which from the biopsy, because the three can disagree. 'We think it is contained' is a fair answer when it comes with what would make the doctor more sure.
Which risk group am I in: low, intermediate or high?
Why ask it
The risk group folds PSA, grade and stage into one label, and most of the advice you hear afterward hangs on it. Find out which of the three results put you in your group, and how close you sit to the line with the next one. Some systems split the groups further, so write down the exact name your doctor uses.
How likely is this cancer to shorten my life?
Why ask it
It sits underneath most of the other questions and it is hard to say out loud, so write it down and read it off the page if you have to. Ask for an answer about your own grade and stage, not about prostate cancer in general, because the name covers cancers that may never cause trouble and cancers that need treating soon. If you are given a figure, ask which men it was drawn from and how closely they resemble you.
Do I need an MRI, a bone scan or a PET scan before we decide anything?
Why ask it
Not every man needs every scan, so a no is fine when it comes with a reason tied to your risk group. If one is ordered, ask what result would change the plan and who will call you with it.
Would a genomic test on the biopsy tissue tell us anything useful in my case?
Why ask it
These tests look at the tumor's own genes to estimate how it is likely to behave, and they tend to come up when the choice between watching and treating is close. Whether one is offered, and who pays, depends on where you are, so ask how it works there before agreeing.
Given my family history, should I have genetic testing?
Why ask it
Write down beforehand which relatives had prostate, breast, ovarian or pancreatic cancer, on either side, and roughly how old they were. The result is about genes you inherited, so it can matter to your brothers, sisters and children as much as to your own treatment. Ask whether a genetic counselor would see you first.
How fast is this likely to grow if we leave it alone for now?
Why ask it
Some prostate cancers grow slowly enough that the answer comes in years and some do not, which is why you need it for yours. If the doctor says it cannot wait, ask what in your results makes them say so and write the reason down.
How much do my age and my general health count in what you would recommend?
Why ask it
A straight answer mentions your other conditions and how many healthy years the doctor expects you to have, which is uncomfortable to hear and is the reason to ask. Be wary of advice that would be identical for a man twenty years older or younger than you.
Options
What are all of my options, including the ones you do not offer yourself?
Why ask it
A urologist operates and a radiation oncologist gives radiation, and each knows their own treatment best. The answer you want names every reasonable route for your risk group and says who you would see about the ones this doctor does not do.
Am I a candidate for active surveillance?
Why ask it
A yes should come with reasons from your own results, and so should a no. If the idea is waved away with no explanation, raise it again with a second doctor, because surveillance is a planned option with its own schedule and not the same as doing nothing.
What would active surveillance involve: which tests, and how often?
Why ask it
Get the schedule as a list: PSA tests, exams, repeat MRI, repeat biopsy, and for how many years. If what you hear amounts to 'come back if anything changes', ask whether that is surveillance or something looser, and what the difference means for you.
What result would make you move me from surveillance to treatment?
Why ask it
The triggers should have names before you start: a higher grade on a repeat biopsy, a change on the scan, a pattern in the PSA. Then a later call to treat is the plan doing its job, not bad news from nowhere.
If I start with surveillance, will every treatment still be open to me later?
Why ask it
This is the fear underneath most hesitation about waiting, so say it out loud. A careful doctor will tell you what the monitoring is designed to catch in time, and will be honest about the fine print: what could be missed between checks.
Which treatment would you recommend for me, and what makes it the better fit in my case?
Why ask it
The reasons should belong to you: your grade, the size of your prostate, your urinary symptoms, your age. 'It is what we usually do' is not one of them, and neither is 'it is what I do'.
For a cancer like mine, do surgery and radiation give similar chances of cure?
Why ask it
Doctors describe the results as close for some risk groups and not for others, so ask about yours and ask where the figures come from. If they are close, the choice turns on side effects and recovery, and the rest of the visit is better spent there.
Are we trying to get rid of this cancer for good, or to keep it in check?
Why ask it
Use those words and wait for a plain reply. If the answer is to keep it in check, the follow-up is what the next few years look like: which treatments, in what order, and what ordinary days are like on them.
Is focal therapy, such as HIFU or cryotherapy, an option for me, and how long have men who had it been followed?
Why ask it
These treat part of the prostate and are offered at some centers and not others. A balanced answer covers what happens if cancer appears in the untreated part, whether surgery or radiation would still be possible afterward, and whether it is paid for where you are.
Treatments
If I have surgery, would it be robotic or open, and how many of these operations do you do in a year?
Why ask it
Robotic or open is the smaller half of this. A surgeon who does the operation often will usually give the yearly number without bristling, and a vague reply is a reason to put the same question to a second center.
Can you spare the nerves on both sides, and what would stop you?
Why ask it
The nerves involved in erections run alongside the prostate, and whether they can be left depends on where the cancer sits. Ask what the surgeon expects from your MRI and biopsy, and how you will learn afterward what was actually done.
How long will I have a catheter, and what does the first month after surgery look like?
Why ask it
You want the practical version: nights in the hospital, days with the catheter, when you can drive, lift and return to your kind of work. Whoever is at home with you should hear this one too, since the first weeks involve them.
Which kinds of radiation are possible for me: external beam, seed implants, or both?
Why ask it
The kinds differ a great deal in how many visits they take, from one procedure to weeks of daily sessions, and not every center offers every kind. If you are told only about what is given here, ask whether another kind would suit you and where you would go for it.
Would hormone therapy be part of my treatment, and for how long?
Why ask it
It is often paired with radiation for higher-risk cancers, and the length can run from months to years, which changes how it feels to live on it. Ask what it adds for you, in numbers if the doctor has them, so you can weigh that against the side effects.
If I have radiation first, is surgery still possible later, and the other way around?
Why ask it
The order can close doors. Put this to the surgeon and to the radiation doctor separately and compare what they say, since each will know best what their own treatment is like as a second step.
Do my urinary symptoms or the size of my prostate make one treatment a better fit?
Why ask it
A man who already gets up three times a night or has a weak stream may hear that one route is likely to help that and another to worsen it. Describe your symptoms before you ask, because they may not be in the notes.
Side effects
How likely am I to leak urine after treatment, and for how long?
Why ask it
Ask about this doctor's own patients: how many are dry at three months and at a year, and what they count as dry. 'Most men do fine' is the reply to push on, with 'how many pads a day is fine?'
What are the chances my erections come back, and when would I know?
Why ask it
It depends on your age, how things are now and what the treatment does to the nerves, so say truthfully where you are starting from. Recovery, where it happens, is usually talked about in months or longer, and a promise of a quick return is one to check with a second doctor.
What do you offer to help erections recover: pills, devices, injections, a specialist?
Why ask it
Some centers start a program soon after treatment and others wait for you to bring it up. Leave with the name of the person who handles it, because this is the subject that tends to get dropped once the cancer itself is dealt with.
Will treatment change how sex feels, or my ability to father children?
Why ask it
Doctors and patients both skip this one, each waiting for the other, so ask plainly what changes with orgasm and ejaculation after each treatment. If children are still a possibility, say so before anything starts and ask about storing sperm, which has to be arranged first.
Could radiation affect my bowels or bladder, during the course or years afterward?
Why ask it
There are two lists here, what happens during the weeks of treatment and what can turn up years later, and for each you want to know how often this center sees it. Mention any bowel condition you already have, since it can change what is recommended.
What will hormone therapy do to my energy, mood, weight and bones?
Why ask it
Hot flashes, tiredness, a lower sex drive and changes in mood are the ones men mention, and a partner often notices the mood before he does. Ask what gets checked along the way, such as bone density, and what exercise or medicine the doctor suggests to blunt the effects.
Should I start pelvic floor exercises now, and can you refer me to someone who teaches them?
Why ask it
They are easier to learn before an operation, with no catheter and no soreness, and a handout cannot tell you whether you are doing them right. Ask whether a pelvic floor physical therapist is available and covered where you are.
A year out, what do your patients say bothers them most?
Why ask it
This gets you past the list of risks to what life is like once treatment is behind you. Ask it of the surgeon and of the radiation doctor, since comparing the two replies is one of the more useful things you can do with two consultations.
Who can my partner and I talk to about the effect on our sex life?
Why ask it
A clinic may have a nurse, counselor or sexual medicine specialist for exactly this, and you may have to ask to be referred. Going together saves one of you from having to report back, and a partner who is in the room for this question usually has one of their own.
Before deciding
How long can I take to decide without making things worse?
Why ask it
The useful answer is a figure, in weeks or months. A doctor who gives you one has also given you room to see a second specialist and talk it over at home, and pressure to book before you leave the room deserves a 'why'.
Would you support me seeing a radiation oncologist as well as a surgeon before I decide?
Why ask it
Hearing from both specialties is a usual kind of second opinion in prostate cancer, because each doctor explains their own treatment in most detail. 'You should, and here is a name' is a good sign. Reluctance tells you something too.
Has my case been discussed by a team that includes a surgeon, a radiation doctor and a pathologist?
Why ask it
Many hospitals hold a regular meeting where new cancer cases are gone over by several specialties, under names such as tumor board or multidisciplinary team. If yours has been, find out what the meeting recommended and whether anyone in the room argued for a different route. If this hospital does not hold one, that is one more reason to see the other specialty yourself.
Can my biopsy slides be read again by a second pathologist?
Why ask it
The grade drives the whole plan and it is a judgment made by eye, so a second reading sometimes moves it up or down. Ask how the slides get sent, how long it takes and whether there is a charge.
Can I have copies of my pathology report, PSA history and scans to take with me?
Why ask it
A second doctor needs the report itself and the images on a disc or a link, not your memory of them. How you request them and how long it takes varies by hospital, so ask at the desk on your way out.
Is there a clinical trial that fits my situation, here or somewhere I could travel to?
Why ask it
Trials in prostate cancer cover surveillance, newer scans and drug combinations, not only last resorts. If the answer is no, ask whether that means none exists or none runs at this hospital.
What will each option cost me, and who here can go through that with me?
Why ask it
Costs differ widely between an operation, weeks of radiation and years of hormone injections, and between countries and insurance plans. Ask for the person who handles it, a financial counselor or the billing office, and have that conversation before you choose.
Follow-up
After treatment, how often will my PSA be checked, and who will be looking after me?
Why ask it
You should leave with the timetable for the first year and the years after, and the name of whoever orders the tests: this doctor, your regular doctor or a nurse-led clinic. Handovers are where follow-up slips, so ask how a missed test would be noticed.
What should my PSA do after treatment, and what number would worry you?
Why ask it
The expected pattern is not the same after surgery as after radiation, so ask for the one that goes with your treatment. Write down what counts as normal, so that a small wobble on the portal does not cost you a week of sleep.
If the PSA rises later, what would we do next?
Why ask it
You are asking whether there is a second step. Hearing it named now, whether that is a scan, further radiation or hormone therapy, means a rising number later arrives with a plan attached.
Which symptoms between visits should I call about, and who picks up?
Why ask it
The list should be short and specific to your treatment, along the lines of fever, not being able to pass urine, blood, or pain that is new. Get the direct number for the urology or oncology nurse, and the one for nights and weekends.
Is there anything in how I eat, exercise or drink that would help from here?
Why ask it
Expect modest, sensible advice, and be careful with anyone selling a diet or a supplement as treatment. List whatever supplements you take and ask whether any could affect your PSA readings or your medicines.
Should my brothers and sons be screened earlier because of my diagnosis?
Why ask it
A family history of prostate cancer is one of the things doctors ask about when deciding whom to test and when. Screening advice differs by country, so ask what is recommended where your relatives live, and pass on your age at diagnosis and your grade.
Is there a nurse, a support group or a counselor for men going through this, and for partners?
Why ask it
Ask for one named person or group and how to reach them this week. Some questions are easier to put to another man who has had the treatment than to a doctor, and a good group can arrange that.
Getting what you need from a prostate cancer appointment
Practical guidance for the conversation itself
Before the appointment
Ask for the reports ahead of time
Call the office and ask for the pathology report, your PSA results with dates and any scan report before the visit, or find them in the portal. Reading the words 'Gleason' and 'Grade Group' at home first means you spend the appointment on what they mean for you, not on spelling them.
Write down where you are starting from
Note honestly how things are now: how often you get up at night, whether you ever leak, how your erections are, any bowel trouble. Every side effect conversation is a comparison with today, and the doctor can only make it if you say what today is.
Choose your first few
No single visit has room for all of these. Mark the questions from the results group you cannot answer yet, add the two or three you most want to hear about, and write them with space underneath. Ask at the start how long you have.
Split the work with your partner
Decide before you go in who takes notes and who asks. A partner often hears the part a newly diagnosed man misses, and often has questions he would not raise, about recovery at home or about sex. Agree beforehand that those are welcome.
Ask to record it
Many doctors are happy for you to record the explanation on a phone, and some hospitals have their own rules about it, so ask first. A recording lets you check a number later instead of arguing at home about what was said.
The numbers you will hear
PSA
A blood test result that is followed over time. Keep your own record of every reading with its date, and ask the doctor what they make of the trend. After treatment the same test becomes the main way of checking on you, so it is worth understanding now.
Gleason score and Grade Group
Both describe how the cancer cells looked under the microscope. The Gleason score is written as two numbers added together, and the Grade Group is a single number from 1 to 5. Ask your doctor to write down both and to explain which end of the scale you are on.
Stage
Stage is about where the cancer is: inside the prostate, just outside it, or further away. It can be an estimate until scans are done, so ask which parts are confirmed and which are the doctor's best reading so far.
Risk group
Doctors combine PSA, grade and stage into a risk group, and treatment advice is usually organized around it. The groups and their names differ a little between guidelines and countries, so ask which system your doctor is working from and what it calls your group.
Comparing what two specialists tell you
See both sides of the choice
If surgery and radiation are both possible for you, try to speak to a doctor who does each before deciding. How that referral is arranged, and whether it costs you anything, depends on your health system or insurer, so ask the office how it works there.
Ask each one the same questions
Take the same short list to both: chance of cure for a cancer like yours, leaking, erections, bowel effects, time off, and what happens if it comes back. Write the answers in two columns. The differences are easier to see on paper than to remember.
Ask for their own results
Published figures describe other hospitals. Ask each doctor what they see in their own patients and how they keep track. A doctor who does not have figures can still tell you how many men they treat and what they hear at the one-year visit.
When the two disagree
Tell each what the other said and ask why they see it differently. Often the disagreement is about which side effect is easier to live with, and that is a question only you can settle. If it is about the facts of your case, a second reading of the biopsy or the scan may resolve it.
Deciding without being rushed
Get the time you have in words
Ask the doctor directly how long the decision can safely wait in your case, and write the answer down. Knowing whether it is days, weeks or months tells you how much reading, talking and second opinion there is room for.
Work out what you most want to protect
For one man it is being done with it, for another staying dry, for another his sex life or avoiding an operation. Say yours to the doctor in plain words. It changes which option they would point you toward, and they cannot guess it.
Talk to men who have been through each
Ask the clinic or a patient organization whether you can speak to someone who chose surveillance, someone who had surgery and someone who had radiation. One man's story is not a prediction for you, but it tells you what the months afterward are like in a way a handout does not.
If the two of you want different things
A partner may want the cancer out at once while he wants to wait, or the reverse. Bring the disagreement to the appointment and let the doctor answer both of you. The decision belongs to the man whose body it is, and it goes better when the person living alongside it has been heard.