Questions to Ask Your Doctor About Pancreatic Cancer
For someone newly diagnosed with pancreatic cancer, or the family member sitting beside them, about to see the surgeon or oncologist. These 52 questions follow the order the decisions usually come in: the type and stage, whether surgery is possible, chemotherapy and radiation, genetic testing and clinical trials, symptoms such as pain, poor digestion and weight loss, and the goal of treatment and what happens next. Each has a note on what a clear or a worrying answer sounds like and what to do with it, and all of them are prompts for a conversation with your own doctors, not medical advice.
The questions
Each question, and why to ask it
Type and stage
What type of pancreatic cancer is this: adenocarcinoma, a neuroendocrine tumor or something else?
Why ask it
Most of what is written about pancreatic cancer describes adenocarcinoma, the commonest type. Neuroendocrine tumors and the rarer kinds behave differently and are treated differently, so have the exact name copied from the pathology report before you look anything up.
Has a biopsy confirmed it, or is the diagnosis based on scans so far?
Why ask it
Some people go to surgery on the strength of the imaging and others need a tissue sample first, often taken during an endoscopy. If no biopsy is planned, ask why not. If one is, ask when the result is due and what cannot start until it is in.
What stage is it, and would you call it resectable, borderline, locally advanced or metastatic?
Why ask it
Treatment is usually planned around those four words more than around a stage number. 'Borderline' and 'locally advanced' are judgment calls that two surgeons can make differently, so if you hear either, ask what on the scan put you there.
Has it spread to the liver, the lungs, the lining of the abdomen or the lymph nodes?
Why ask it
A 'no' is worth more when you know which scans it rests on, since small deposits can be hard to see. If a spot is 'too small to call', ask how and when it will be settled, and whether this center ever looks inside with a camera before committing to surgery.
Does the tumor touch or wrap around any major blood vessels?
Why ask it
Often this is the detail that decides whether an operation is possible. Write down which vessel, whether it is a vein or an artery, and how much of it is involved, in the doctor's exact words. A second surgeon will want to know precisely that.
Where in the pancreas is the tumor: the head, the body or the tail?
Why ask it
A tumor in the head tends to show itself early through the bile duct, while one in the body or tail can stay quiet for longer, and the location also decides which operation, if any, would be on the table. A drawing with the bile duct and the nearby blood vessels marked is worth asking for.
Were any of my scans done specifically to look at the pancreas, or do they need repeating?
Why ask it
A scan ordered in an emergency room to explain pain is not always detailed enough to plan treatment from. A doctor who wants it redone to a pancreas protocol is being careful, not stalling. What you need from them is the date it can be done.
What is my CA 19-9 level, and how much do you rely on it?
Why ask it
This blood marker is followed in many pancreatic cancers, but a blocked bile duct can push it up and some people do not produce it at all. Get the number and the date, and ask whether yours will be a useful guide later.
Has my case been discussed at a tumor board, and which specialists were there?
Why ask it
For this cancer the answer you hope for names a pancreatic surgeon, a medical oncologist, a radiation oncologist and a radiologist reading the same scans together. If only one specialty has seen your case, ask when the others will.
Surgery
Is surgery possible for me, either now or after other treatment?
Why ask it
Expect one of three answers: yes now, perhaps after chemotherapy, or no. With a no, ask whether the reason is spread, blood vessels or your general health, because that tells you whether another surgeon might see it differently.
Which operation would it be: a Whipple, a distal pancreatectomy or removal of the whole pancreas?
Why ask it
Each takes out different organs and leaves a different recovery behind it. Ask the surgeon to draw what is removed and what is reconnected, and keep the drawing to show the people who will be looking after you.
How many Whipples and other pancreatic resections did you do last year, and how many did this hospital do?
Why ask it
Ask for both figures, since the nurses and intensive care staff who look after you afterward matter as well as the surgeon. Someone who does these regularly answers without bristling. If the number is low or vague, ask where they would send a patient who wanted a busier center.
What are your own complication rates for this operation, and what goes wrong most often?
Why ask it
Leaks where the pancreas is rejoined, a stomach that is slow to empty and infections are the ones surgeons tend to name. Listen for specifics, and for how the team spots a problem early, more than for a spotless record.
Might a blood vessel need to be removed and rebuilt, and how often do you do that?
Why ask it
Not every surgeon takes on vein reconstruction, and a tumor resting against a vessel can be operable in one hospital and not in another. If the answer here is 'we don't do that', it is a reason to have the scans read at a center that does.
What happens if you start the operation and find you cannot remove it?
Why ask it
It does happen, and the recovery room is a hard place to learn the plan for the first time. Ask what the surgeon would do instead while you are asleep, such as a bypass around a blockage, and who would tell your family.
How long would I be in the hospital, and what do the first three months of recovery look like?
Why ask it
Get it in days in the hospital, weeks before driving or lifting, and when eating usually settles. Then ask what a slow recovery looks like, because arranging help at home for the average case leaves you short if yours is not.
What do 'clear margins' mean, and when will we know whether you got them?
Why ask it
After the operation a pathologist reports whether cancer cells reached the cut edge and how many lymph nodes were involved. Find out when that report arrives, who goes through it with you, and what it could change about the treatment that follows.
Will I need insulin or enzyme capsules after this operation, and for how long?
Why ask it
It depends on how much of the pancreas is left and how well it was working before. Ask how likely each is for the operation proposed, and insist on being taught how to manage them before you go home, not at the first clinic visit after.
After the operation, how often will I have scans and blood tests, and what would bring me in between them?
Why ask it
Follow-up schedules differ between centers, so get this one's in writing: which scan, which blood marker and how many months apart. If your CA 19-9 was never raised, ask what they will follow instead. Then have the surgeon list the changes that should not wait for the next slot, and who you call.
Chemo and radiation
Do you recommend chemotherapy before surgery, after it or both, and why in that order?
Why ask it
Centers differ on this, so listen for the reasoning. One side wants to treat what scans cannot see before operating, the other wants the tumor out while it can still be removed. Ask which worry is bigger in your case.
Which chemotherapy regimen are you proposing, and which others did you weigh against it?
Why ask it
Have the name written down, since every nurse and pharmacist will ask you for it from now on. The choice often turns on age, fitness and other conditions, so describe an ordinary day truthfully, including how much of it you spend resting. Playing that down can land you on a regimen you cannot finish.
How is the chemotherapy given, and what does one cycle look like from start to finish?
Why ask it
Some regimens send you home wearing a small pump for a couple of days and others are a shorter infusion on a set weekday. Ask how many hours in the chair, how often, whether you need a port first, and who disconnects the pump.
Which side effects go with this particular regimen, and which ones do I report the same day?
Why ask it
The lists differ by drug: tingling fingers, sensitivity to cold, diarrhea, mouth sores, low blood counts. Have the doctor split them into 'expected, here is what to take' and 'call us now', and get the fever number and the after-hours line onto one card.
When will you scan again, and what result would make you change the plan?
Why ask it
Agree in advance on what counts as working. A tumor that has simply not grown may be exactly what the oncologist was hoping for, and hearing that beforehand keeps 'stable' from landing as bad news.
If this chemotherapy stops working or I cannot tolerate it, what would you try next?
Why ask it
A lower dose or a longer gap between cycles is sometimes tried before a regimen is dropped, so ask whether that would come first for you. Then get the name of the fallback regimen and whether a trial would be looked at again at that point. A second plan named early makes a disappointing scan less of a cliff.
Is radiation part of the plan, and what would it add for me?
Why ask it
Its place in pancreatic cancer is less settled than that of surgery or chemotherapy, and centers use it differently. Ask what job it would be doing for you: pulling the tumor back from a vessel, holding it where it is, or easing pain.
If chemotherapy shrinks the tumor or holds it steady, who decides whether surgery is back in play, and when?
Why ask it
People get lost at this join between the oncologist and the surgeon. Ask for the date of the scan after which the surgeon looks again, and check that the surgeon's office has that date too.
Genes and trials
Should I have genetic testing for inherited mutations, even with no cancer in my family?
Why ask it
It is widely offered to people with this diagnosis whatever the family history, though how it is arranged and paid for depends on where you are treated. An inherited change such as BRCA can bear on drug choice as well as on your relatives, so ask whether the result will be back before the regimen is fixed.
Has the tumor itself been tested for mutations or other markers, and can I have the report?
Why ask it
This is a separate test from the inherited one and is run on the biopsy or the surgical sample. Ask which markers were looked for and whether there was enough tissue. 'Insufficient sample' is a common reply. If you get it, ask whether a repeat biopsy or a blood-based test is worth doing.
Do any of my test results open the door to a targeted drug or immunotherapy?
Why ask it
For many people the answer is no, and it still deserves one clear sentence from the oncologist. If it is yes, find out whether that drug would come first or be held in reserve, and how you would get access to it where you live.
Should my children, brothers and sisters be tested or screened because of my diagnosis?
Why ask it
If an inherited change is found, ask for the gene name in writing so relatives can take it to their own doctors. If nothing is found, ask whether the family history alone is enough for anyone to be referred to a screening program.
Is there a clinical trial that fits me at this point, here or at another center?
Why ask it
Ask it again at every fork: before any treatment, before surgery, and whenever the plan changes, because starting a drug or having the operation can rule you out of a trial you would have fitted the week before. 'Not here' is different from 'none', so follow up with who would know about other hospitals. Patient organizations for pancreatic cancer often help with the search.
If I joined a trial, what would I get that I would not get otherwise, and what would I give up?
Why ask it
The practical checklist is whether everyone receives at least the standard treatment, whether there is a placebo, how many extra visits and biopsies it means, and whether you can leave at any time. Who pays for the drug, the extra scans and the travel differs from trial to trial, so get that in writing from the trial coordinator.
Symptoms and support
What is causing my pain, and what is the plan if the first medicine does not control it?
Why ask it
Tell the doctor where it sits, whether it goes through to the back, and the number out of ten at its worst. A good answer is a ladder with a next step and a person to call, not a single prescription and a visit in a month.
Would a nerve block help, and who does that here?
Why ask it
A celiac plexus block is aimed at the nerves that carry pain from the pancreas and is done through an endoscope or through the skin. It does not suit everyone, so ask at what point the team would consider it. That way it is an option you know about, not a last resort nobody mentioned.
Should I be taking pancreatic enzymes with food, and how exactly do I take them?
Why ask it
Pale, greasy or floating stools, bloating and losing weight while eating normally are the things to describe if you have them. If enzymes are prescribed, timing and dose make the difference, so get exact instructions for meals, snacks and milkshakes or supplement drinks, and the name of whoever adjusts the dose.
Can I see a dietitian who knows pancreatic cancer, and how soon?
Why ask it
Ordinary healthy-eating advice can be the reverse of what someone losing weight on this diagnosis is told. The reply you want is a named dietitian and an appointment before treatment begins. 'We can refer you if it becomes a problem' is the one to push back on.
How much weight loss is too much, and what would you do about it?
Why ask it
Settle on a number and a routine: same scale, same time of day, once a week. Then ask what follows if you cross the line, whether that is supplement drinks, a change of enzyme dose, an appetite medicine or a feeding tube, so none of it arrives as a surprise.
Should my blood sugar be checked, and who manages it if it is high?
Why ask it
Diabetes that is new, or suddenly harder to control, often travels with this disease, and steroids given alongside chemotherapy can raise sugars further. The risk is that it sits between the oncologist and your regular doctor with neither owning it, so get one name.
If I am jaundiced or itching, do I need a stent in the bile duct, and will it delay treatment?
Why ask it
Ask whether the stent would be metal or plastic and whether it gets in the way of an operation later, since surgeons have views on this. Then learn the signs that a stent has blocked, usually fever, chills or the yellow coming back, and where to go the same day.
What should I do about nausea, feeling full after a few bites or vomiting after meals?
Why ask it
These can come from the treatment or from the tumor narrowing the way out of the stomach, and the remedies are not the same. Say how long after eating it happens and what comes up. Ask at what point the team would check for a blockage.
Am I at higher risk of blood clots, and which signs should send me to the emergency room?
Why ask it
Clots in the leg or lung are a recognized complication of pancreatic cancer and of some of its treatments. Whether a preventive blood thinner makes sense is your doctor's call, but everyone at home should know the signs you are given, typically one swollen or painful calf, sudden breathlessness or chest pain.
When would you bring in the palliative care team, and can it be now?
Why ask it
In many hospitals this team's job is pain, appetite, sleep and mood at any stage, alongside treatment and not instead of it. If the doctor hears a question about dying, say you are asking about symptom control. A reply of 'you are not there yet' means you should ask what the team does at this center.
Who can I talk to about fear, low mood or not sleeping?
Why ask it
Low mood and anxiety are common enough with this illness that the question will not surprise the team, so raise it even if it seems minor beside everything else. Get the name of the counselor or service and how to book, and check whether it also sees the person looking after you.
Goals and next steps
What is the goal of the treatment you are recommending: cure, more time or comfort?
Why ask it
Ask the doctor to choose one of the three words. Patients and doctors can leave the same conversation with different ideas of what treatment is for, and how much sickness or time in hospital you would accept depends on which it is.
If treatment goes as well as you could hope, what does that look like, and what is more typical?
Why ask it
Asking for the best case and the usual case gets a truer picture than a single figure. Say first how much you want to hear, since some people want numbers and others only want to know what to plan for, and the doctor cannot guess which you are.
What would happen if I chose no surgery or chemotherapy and treated only the symptoms?
Why ask it
A legitimate choice, and asking about it commits you to nothing. A full answer covers what the coming months would probably involve and what help exists at home. Hospice and home care are set up differently in every health system, so get the name of whoever arranges them from this hospital.
Would you send my scans to a high-volume pancreatic center for a second opinion before we start?
Why ask it
It matters most when you have been told surgery is not possible, or when the hospital sees few cases like yours. Many centers will review images and reports without you traveling. Ask your doctor how long treatment can safely wait for the answer.
Who coordinates between the surgeon, the oncologist and everyone else, and is that who I call?
Why ask it
With this many specialists, messages go missing where one team hands over to the next. A nurse navigator or coordinator with a direct number is the best answer. If there is none, ask which doctor considers themselves in charge of the whole plan.
Who can tell me what I will pay myself, and who helps with approvals, travel and time off work?
Why ask it
All of it depends on your country, insurer and employer, so what you need from this question is a person, often a financial counselor or social worker. See them before the first bill arrives, and bring up lodging if the operation will be far from home.
What should I put in writing now in case I become too ill to speak for myself?
Why ask it
The documents go by different names and follow different rules in each state and country, so have the team's social worker show you the ones used where you live. Doing it early is ordinary planning. The paper matters less than telling the person you name what you would and would not want.
What are the next three things that happen, and on what dates?
Why ask it
End the visit here. Read the list back with who books each item, whether it is a scan, a port or a clinic slot, and agree on a day when you call if you have heard nothing.
Getting clear answers at a pancreatic cancer appointment
Practical guidance for the conversation itself
Before you see the surgeon or oncologist
Collect the paper trail
Ask for the pathology report, the written report of every scan, the scan images as well as the reports, and your blood results including CA 19-9. Each hospital releases records in its own way, so start with the records office and allow a few days. Every later appointment, and any second opinion, starts from this file.
Sort the questions by who can answer them
A surgeon answers for the operation, a medical oncologist for chemotherapy and trials, a radiation oncologist for radiation, and a nurse or dietitian for much of the symptoms group. Mark each question you pick with the person it belongs to, so a surgeon's twenty minutes do not go on something the dietitian handles better.
Keep a week of notes
For the week before the visit, write down your weight, what you managed to eat, pain scores, changes in your stools and anything that woke you at night. Decisions about enzymes, pain relief and fitness for treatment are easier to make from a week of notes than from 'not great'.
Decide how much you want to hear
Settle beforehand whether you want survival figures, a general outline or only the plan, and say so at the start. If the patient and the family want different amounts, agree on who hears what, and whether a relative may speak to the doctor separately with the patient's permission.
Bring a second listener
News like this crowds out memory. Give one person the job of writing down names, dates and the exact words used for stage and for whether surgery is possible. Ask before recording anything, since the rules and each doctor's preference differ.
Words you will hear, and what to ask when you do
Resectable, borderline, locally advanced, metastatic
These describe whether a surgeon thinks the tumor can be removed: yes, possibly after other treatment, not as things stand, and spread to other organs. They are readings of a scan and not lab results, so when you hear one, ask what on the images led to it and whether another center might read them differently.
Neoadjuvant and adjuvant
Neoadjuvant treatment is given before an operation and adjuvant treatment after it. The drugs can be the same while the purpose and the timing differ. When either word comes up, ask how many cycles are planned and what happens at the end of them.
Whipple
The everyday name for a pancreaticoduodenectomy, an operation for tumors in the head of the pancreas that also takes part of the small intestine, the gallbladder and part of the bile duct. A spoken description is hard to picture, so have the surgeon draw it, including what is joined back together.
Germline and tumor testing
Germline testing reads your inherited genes from a blood or saliva sample, and its result matters to relatives as well as to you. Tumor testing, also called somatic testing, reads the changes that arose in the cancer itself. People are often told 'the genetic test was negative' without knowing which of the two was done, so ask.
Palliative
The word is attached to chemotherapy meant to control a cancer and not remove it, to operations that bypass a blockage, and to a team that treats symptoms at any stage. Those are three different things, so when it appears, ask which one is meant.
Getting a second opinion from a pancreatic center
When it is worth the wait
The clearest cases are a tumor called inoperable or borderline, a hospital that does few pancreatic operations, an unusual tumor type, or two doctors who have told you different things. Ask your current doctor how long treatment can wait, so you know whether you have days or weeks.
What to send
Send the scan images and not only the written reports, the pathology report and the slides if the second center asks for them, blood results, and any endoscopy or operation notes. Confirm that all of it has arrived before the appointment, or the visit becomes a request for more records.
Ask whether it can be done from a distance
Some centers review images and records and give their view by video or letter. Whether that is offered, and what it costs, varies by center and by insurer or health system, so put the question to the center and to whoever pays before you send anything.
When the two plans differ
Ask each doctor why the other might have reached a different view. Often the gap is the order of treatment or the reading of one blood vessel, and a call between the two teams can close it. You can also ask whether the operation could be done at one hospital and the chemotherapy nearer home, with both teams working from one plan.
Where these conversations go wrong
Leaving without the goal stated
Plenty of people finish a first visit knowing the drug names and not whether the aim is cure, more time or comfort. If you ask only one question from the last group, make it that one.
Treating 'inoperable' as the last word
It can mean the cancer has spread, that a blood vessel is involved, or that this surgeon would not attempt it. The second and third are the ones another center may see differently, so find out which it is before you accept it.
Reading survival figures alone at night
Published figures describe large groups, many of them treated years ago, and they lump together situations very unlike each other. If you want numbers, ask your own doctor for the ones that fit your stage and health, and what would put you above or below them.
Waiting to be asked about symptoms
Appointments drift toward scans and schedules. Pain, weight, stools and mood get dealt with when you raise them, with specifics, at the start of the visit. A team cannot treat what it has not been told.
Family speaking over the patient
Relatives sometimes ask about the outlook when the patient has not chosen to hear it, or answer questions about pain on the patient's behalf. Agree beforehand on who asks what, and let the patient answer first about their own body.