You've Just Been Diagnosed With Pancreatic Cancer and There Is a Clear Path Forward

Your body is built from tiny building blocks called cells. You have trillions of them, and they do different jobs depending on where they are.

Your pancreas sits behind your stomach, deep in your abdomen. It is about six inches long and shaped a bit like a flattened pear lying on its side. The wide end is called the head, the middle is the body, and the narrow end is the tail.

It does two completely separate jobs.

It makes digestive enzymes, which travel down a small tube into your intestine and break down the food you eat, particularly fat.

It makes insulin, which controls the sugar in your blood.

Pancreatic cancer happens when cells in the pancreas start growing when they should not, and keep going.

Two things sit right beside the pancreas and matter enormously.

The bile duct, which carries bile from your liver to your intestine, runs through the head of the pancreas. That is why a tumour there can block it and cause yellowing of the skin and eyes, called jaundice. It is also why jaundice is sometimes what leads to the diagnosis.

Major blood vessels run immediately behind the pancreas. How the tumour sits against those vessels is the single most important thing your doctors will assess, and it is covered properly in Step 3.

Nothing can be done is not true. There are established treatments, there is surgery for many people, there are chemotherapy combinations that work, and there are targeted medicines for people with specific genetic findings. There is also more research activity in this cancer right now than at almost any point in its history. What you can be offered depends entirely on your own situation, which nobody has finished working out yet.

You did not cause this. For most people with pancreatic cancer there is no identifiable cause at all. Not diet, not alcohol, not stress, not anything you did. Going back through your life looking for the moment you caused it will not turn one up, because it is not there.

You cannot catch it and you cannot give it to anyone. It is not caused by a germ and does not pass between people.

One more thing that catches people out. Being told you need a stent is not more bad news. A stent is a small tube placed to hold the bile duct open when a tumour is pressing on it. It relieves jaundice, makes you feel considerably better, and is often needed before treatment can start. It is a practical step rather than a setback.

The type. Most pancreatic cancer is pancreatic ductal adenocarcinoma, which starts in the cells lining the tubes that carry digestive enzymes. This is what most people mean by pancreatic cancer.

There is a completely separate and much less common group called pancreatic neuroendocrine tumours, which come from the hormone producing cells. These behave differently and are treated differently. If your report says neuroendocrine, most general pancreatic cancer information does not apply to you, and it is worth confirming this clearly.

Resectability status. This is the category that drives everything, and it is more important than the stage number.

• Resectable means the tumour can be removed with surgery.
• Borderline resectable means it is close to the major blood vessels, and surgery may become possible after treatment shrinks it back.
• Locally advanced means it involves those vessels more extensively.
• Metastatic means cells have travelled to other organs.

Here is the part that matters most on this page. This status is a judgement, not a measurement. It depends on interpreting how the tumour sits against arteries and veins, and different centres genuinely reach different conclusions. Specialist pancreatic surgeons operate on tumours that other centres declined to attempt.

It is also not fixed. Tumours that could not be removed at diagnosis sometimes become removable after chemotherapy. Reassessment after treatment is standard practice at specialist centres.

Germline genetic testing. Testing your inherited DNA, usually from blood or saliva. Guidelines now recommend this for everyone with pancreatic cancer. When it finds a change in genes such as BRCA1, BRCA2 or PALB2, specific treatments become available that would otherwise never have been considered. It also gives your children and siblings information they can act on.

It is recommended for everyone and it is still not done for everyone. Ask whether it has been ordered.

Most people find out from a scan done because of jaundice, pain or weight loss, or from a gastroenterologist, a doctor specializing in the digestive system, who did an examination with a camera.

Pancreatic cancer involves several doctors.

• A hepatopancreatobiliary surgeon, often shortened to HPB surgeon, or a surgical oncologist, performs the operation.
• A medical oncologist handles chemotherapy and targeted medicines. An oncologist is simply a cancer doctor. Because so much of pancreatic treatment is medicine, this doctor often coordinates the whole plan.
• A radiation oncologist may be involved, particularly for borderline situations.
• A gastroenterologist performs endoscopic ultrasound and biopsy, and places stents.

Here is what makes this cancer different from every other page here.

The main operation for a tumour in the head of the pancreas is called a Whipple procedure. It is among the most complex operations in all of surgery, involving removing part of the pancreas, part of the small intestine, the gallbladder and part of the bile duct, then reconnecting everything.

The relationship between how often a centre performs this operation and how patients do afterwards is the strongest documented in surgical medicine. It is not close, and it is not a matter of opinion.

It is not only about the surgeon. It is about the anaesthetists, the intensive care team, the nurses who have managed many of these recoveries, and the systems that catch problems early.

Asking about volume is the single most useful thing you can do this week.

If your skin or the whites of your eyes are yellow and you have a fever, or you have severe pain that will not settle, do not wait for an appointment. Go to your nearest emergency department.

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Reason 1. Where You Have Surgery Matters More Here Than Anywhere.

This is the clearest evidence on this entire site.

The Whipple procedure performed at a high volume centre produces substantially better results than the same operation at a centre that performs it a handful of times a year. Fewer complications. Better recoveries.

Many countries now formally direct this operation to designated centres because the evidence became impossible to ignore.

The reason is not that surgeons elsewhere are careless. It is that this operation demands an entire system. Anaesthetists familiar with its particular demands. Intensive care staff who recognize the early signs of a problem. Nurses who have seen dozens of these recoveries and know what day four should look like. Interventional radiologists who can deal with a complication without a second operation.

You cannot assemble that in a hospital that does four of these a year.

So the question is not only who operates. It is how many of these does this hospital do? A good answer is a number given without hesitation.

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Reason 2. Whether Surgery Is Possible Is a Judgement, and Centres Disagree.

This is the second thing, and it is the one that changes lives.

Whether your tumour can be removed depends on how it sits against the arteries and veins running behind the pancreas. That is read from a scan by a person, and different people reach different conclusions.

Specialist pancreatic surgeons routinely operate on tumours that other centres declined to attempt. They can rebuild a vein that the tumour involves, a technique called vascular reconstruction, which is not available everywhere.

If you have been told your tumour cannot be removed, that is one of the most worthwhile things in all of cancer medicine to get a second opinion on. Not because your doctor is wrong, but because this specific judgement genuinely varies.

There is a second half to this. Locally advanced is not a verdict issued once. After several months of chemotherapy, tumours are reassessed, and some that were not removable become removable. Specialist centres build that reassessment into the plan. Centres that see this rarely may not.

Ask directly. If it is not removable now, will you reassess after treatment?

Reason 3. Genetic Testing Is Recommended for Everyone and Still Gets Missed.

Every guideline says everyone with pancreatic cancer should have germline genetic testing, meaning testing of your inherited DNA from blood or saliva.

It is a simple test and it does two things.

It can open a treatment. If you carry a change in BRCA1, BRCA2 or PALB2, a class of medicine called PARP inhibitors can be used as maintenance treatment after chemotherapy. That option only exists if the test was done. It also means certain chemotherapy combinations are likely to work better for you.

It gives your family something actionable. Your children and siblings can be tested, and if they carry the same change there are screening programmes available to them.

Despite all of that, it still gets skipped, usually because nobody thought to order it early.

Specialists order it as routine at the first appointment. If nobody has mentioned it to you, ask about it by name.

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Reason 4. Four Things Specialists Do That Others May Not.

They order the right scan. A pancreas protocol CT is performed with specific contrast timing designed to show the pancreas and the vessels behind it clearly. An ordinary abdominal CT is not the same test and cannot answer the same question. If you have not had one, ask.

They give treatment before surgery. For most people, chemotherapy first and then surgery has become the preferred order at specialist centres, because it treats the whole body earlier and shows how the tumour behaves before committing to a major operation.

They prescribe pancreatic enzyme replacement. This is covered properly in Step 16 and it is the most commonly missed thing in the whole of pancreatic care. It transforms how people feel and it is chronically under prescribed.

They talk about trials from the beginning. This cancer has an unusually active research effort, and specialist centres run most of it.

Reason 5. How We Pick the Doctors on This Site.

Every pancreatic cancer doctor on Cancerify is checked against a strict, published set of standards before we add them. We look at published research, work on clinical trials, professional recognition, leadership roles and awards.

Most of all, we look at whether that record is about pancreatic and hepatobiliary cancer specifically rather than spread thinly across many cancers. Those are not the same thing.

Doctors can never pay to appear here, and neither can hospitals. We are not connected to any hospital or practice, and no money changes hands.

We do this so you do not have to spend the hardest week of your life trying to work out who is who.

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Almost everyone newly diagnosed with pancreatic cancer should get a second opinion at a specialist centre, and here there are two distinct reasons rather than one.

The resectability judgement. As in Reason 2, whether your tumour can be removed is a judgement that genuinely varies between centres. This is one of the clearest examples in all of medicine where a second opinion changes what is possible rather than simply confirming what you already know.

Completeness. Germline testing, tumour profiling and the correct scan are all things specialist centres add as routine.

It is not rude and nobody will be offended. Doctors arrange second opinions for their own family members.

On timing. Because this cancer moves at a faster pace, arrange things in parallel rather than in sequence. Request the second opinion appointment while your first centre is still completing tests. You are not choosing between them.

When you arrange it, ask for these things to be sent on.

• Your pancreas protocol CT on a disc. The actual images, not just the report.
• Your pathology report, if you have had a biopsy
• Your CA 19-9 result
• Your endoscopic ultrasound report
• Any germline or tumour genetic testing results
• Your liver function blood tests
• The proposed plan in writing

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• Bring someone with you. Not just for support, though that helps, but for memory. Almost nobody remembers more than a small part of a first appointment, and less when frightened.
• Bring your scans on a disc, not just the report. The images matter here more than almost anywhere.
• Bring a note of your weight, including what it was six months ago.
• Write your questions down and put the surgery question first.
• Ask for the plan in writing, including your resectability status.

• A hepatopancreatobiliary or surgical oncologist performs the operation.
• A medical oncologist handles chemotherapy and targeted medicines, and often coordinates the whole plan.
• A radiation oncologist may deliver radiation, particularly for borderline situations.
• A gastroenterologist performs endoscopic ultrasound and biopsy, and places stents when the bile duct is blocked.
• A genetic counsellor should be part of your team, because testing is recommended for everyone. Frequently missing.
• A dietitian matters enormously here and is the other commonly missing person. Ask for one.
• A specialist nurse is often who you speak to most.
• A palliative or supportive care team is worth meeting early rather than late. That word alarms people, and in this cancer it usually means a team who are very good at pain, nutrition and symptom control alongside your treatment. People who see them early generally feel better throughout.

• Resectability status. Resectable, borderline resectable, locally advanced or metastatic. The category that drives everything.
• Pancreas protocol CT. A CT with specific contrast timing showing the pancreas and surrounding vessels clearly. Ask whether yours was this rather than an ordinary abdominal scan.
• Location. Head, body or tail. This decides which operation applies.
• CA 19-9. A blood marker used to follow progress over time. Some people do not produce it at all, so a normal level does not mean anything is being missed. It can also be raised by a blocked bile duct rather than by the cancer.
• Germline genetic testing. Your inherited DNA, tested from blood or saliva, looking for changes including BRCA1, BRCA2 and PALB2.
• Tumour molecular profiling. Testing the tumour itself, including for MSI status and rarer changes such as NTRK and KRAS G12C, which have matched treatments.
• Liver function tests. Particularly relevant if you have jaundice or a stent.

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• Week one. A pancreas protocol CT is arranged if you have not had one. If you have jaundice, a stent is usually placed to relieve it, which makes you feel considerably better within days.
• Week one to two. An endoscopic ultrasound with biopsy confirms the diagnosis. Germline genetic testing is sent. You are referred to a specialist centre.
• Week two to three. Your case goes to a multidisciplinary meeting where surgeons, oncologists and radiologists review the scan together. Your resectability status is set here.
• Week three to four. Treatment begins. For most people that is chemotherapy first, given in cycles over several months.
• After several months of chemotherapy. Scans are repeated and resectability is reassessed. This is the reassessment point that matters, and it is why locally advanced is not a final answer.

If things feel like they are moving fast, that is appropriate here rather than alarming.

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Pancreatic cancer does have a stage number, and in practice the category that drives your treatment is the resectability status described in Step 3.

That status depends on how the tumour sits against the arteries and veins behind the pancreas, which is read from your pancreas protocol scan.

Resectable usually means chemotherapy first at most specialist centres, then surgery, then more chemotherapy afterwards. Some centres still operate first, and it is fair to ask which approach yours takes and why.

Borderline resectable means chemotherapy, sometimes with radiation, with the aim of making surgery possible.

Locally advanced means treatment first, with surgery reconsidered afterwards. Read that again if you need to. Reconsidered afterwards.

Metastatic means systemic treatment leads, meaning medicine that travels through the whole body, guided by your genetic results.

Call your team straight away, at any hour, if you have any of these.

• A temperature of 100.4°F (38°C) or higher. Do not wait until morning, and do not take paracetamol or acetaminophen first, because that hides it.
• Fever together with yellowing of your skin or eyes, or with shaking chills. If you have a stent, this can mean it has blocked and become infected. It needs same day attention and it is very treatable when dealt with promptly.
• Yellowing of your skin or eyes that is new or getting worse, or pale stools with dark urine.
• Swelling and pain in one leg, or sudden breathlessness or chest pain. Blood clots are more common in pancreatic cancer than in most, and your team will already be watching for them. Report these promptly rather than waiting.
• Severe abdominal or back pain that will not settle. Pain here is treatable and there is no reason to endure it. If your pain relief is not working, that is a reason to call rather than something to put up with.
• Being unable to keep fluids down for more than a few hours, or persistent vomiting.
• After surgery, redness, heat, swelling or fluid leaking from a wound.

Your team should give you a number to call at any time. If nobody has given you one, ask at your next appointment. If you cannot find it, go to your emergency department and tell them at the desk that you have pancreatic cancer, are having treatment, and have a stent if you do. Say the stent part, because it changes what they check first.

Nobody will think you are overreacting.

There is no food that cures pancreatic cancer and no diet that replaces treatment.

Pancreatic enzyme replacement is the thing to ask about. Your pancreas makes the enzymes that break down food, particularly fat. When a tumour blocks the tube those enzymes travel through, or when part of the pancreas is removed, your body cannot digest food properly.

The signs are specific. Loose, pale, greasy stools that float or are hard to flush. Wind and bloating. Losing weight even when you are eating.

The treatment is capsules taken with every meal and every snack.

This is chronically under prescribed. Many people are never offered it, and many who are offered it are given too low a dose. People who get it right often say it transformed how they feel, how much weight they hold and how well they cope with chemotherapy.

If nobody has mentioned it, ask. If you are taking it and still have those symptoms, ask whether your dose is high enough. Both questions are entirely reasonable and specialists expect them.

Keeping weight on is genuinely part of your treatment. Going into chemotherapy and surgery well nourished affects how well you come through both.

New diabetes is common here. The pancreas makes insulin, so blood sugar problems can appear either from the cancer or after surgery. If you are thirsty, passing urine often or unusually tired, mention it.

Small and often works better than three meals.

Tell your team every supplement and herbal remedy you take. Bring the actual bottles.

The reaction to the word

Pancreatic cancer has a reputation, and people react to the word before they know anything about your situation.

You may find that people go quiet, or become tearful, or start behaving as though something has already been decided. That is exhausting when you are still gathering information yourself.

Two things help.

Give people your actual situation rather than the word. "Mine is being treated with chemotherapy first, and they will reassess whether surgery is possible after that." Specific information gives people something to hold on to instead of what they have absorbed from elsewhere.

You are allowed to manage what you take on. You do not have to comfort everyone you tell. It is entirely reasonable to tell a small number of people and let them tell others.

Telling family and friends

If your germline genetic testing finds an inherited change, your children and siblings can be tested and there are screening programmes for people who carry one. That is a genuinely useful thing to come out of this and it is worth raising once you have your results.

Decide who needs to know now and who can wait. You do not have to tell everyone at once.

If you work, you do not have to tell your employer your diagnosis, only what you need practically.

If there are children in your life, telling them something true in simple words works better than saying nothing. Children notice weight loss and hospital visits, and what they imagine is almost always worse than what is happening.

About the supportive care team

That name, sometimes called palliative care, alarms people enormously because of what they assume it means.

Here is what it actually is. It is a team who are very good at pain, nutrition, sickness, tiredness and sleep, working alongside your cancer treatment rather than instead of it.

Pancreatic cancer causes symptoms that respond well to expert management, and people who meet this team early generally feel better throughout their treatment than people who meet them late.

Asking for a referral is not giving anything up. It is asking for people who are good at making you feel better to be involved.

Why talking about it helps

A lot of people try to carry this quietly, often to protect their family from a word they know will frighten them. That is understandable, and it tends to make things harder rather than easier.

Feeling frightened, angry, numb, or nothing at all is normal. So is being fine one hour and not fine the next.

Talking does not fix the cancer. What it does is stop the same thoughts going round on their own at three in the morning.

Talking to someone professional

Most cancer centres have a counsellor or psychologist who works only with people who have cancer, and in most places this is free. Very few people are told about it, so you usually have to ask.

You do not need to be in crisis to see one.

Ask your specialist nurse, who will usually know who to contact.

If you find yourself feeling very low, hopeless, or not wanting to go on, tell your team. Say it plainly. They will take it seriously and they will not be shocked, because they have heard it many times and they know how to help.

Support groups, and why they are different

Friends and family love you, and they cannot know what this is like.

• Pancreatic cancer groups exist specifically, and they are worth seeking out because so much of the practical knowledge here is particular to this cancer. Enzyme doses. Eating after a Whipple. What the reassessment scan process is like.
• Ask your hospital first. High volume centres often run their own groups.
• Online groups can be excellent, and they can also be frightening. With this cancer more than most, what you read online is not a fair picture of your own situation. If a group leaves you feeling worse each time, leave it. That is not giving up.
• Groups for family and carers exist too, and they matter here.

You do not have to do any of this in the first week.