Pancreatic ductal adenocarcinoma · Living with it

Newly diagnosed

Who is my clinical nurse specialist (my key worker), and what is the 24-hour number for the team?
Why: The NHS says your team will include a clinical nurse specialist who is your main point of contact during and after treatment; Pancreatic Cancer UK says if you have not been given a key contact, ask the doctor who to contact with questions.
Can the cancer be removed, and which word describes mine: resectable, borderline resectable, locally advanced or metastatic?
Why: Cancer Research UK says the team first looks at your scans to see if they can remove the cancer, and that word decides whether treatment starts with an operation, with chemotherapy, or with treatment to control the cancer.
Has my case been discussed at the specialist pancreatic cancer multidisciplinary team meeting, and when will I hear what was decided?
Why: NICE NG85 says a specialist pancreatic cancer multidisciplinary team should make a shared decision with the person about the care that is needed; Cancer Research UK lists who sits on it, including a dietitian and a palliative care doctor.
Do I need a biopsy before treatment, and have I had a pancreas-protocol CT of the chest, abdomen and pelvis?
Why: Pancreatic Cancer UK says you will need a biopsy to confirm the diagnosis before some treatments, including chemotherapy or clinical trials; NICE NG85 says everyone newly diagnosed should be offered a pancreatic protocol CT scan including the chest, abdomen and pelvis.
Should I be taking pancreatic enzymes now, and can I be referred to a dietitian this week?
Why: Pancreatic Cancer UK says most people with pancreatic cancer will need to take PERT and to ask if you have digestion symptoms and have not been prescribed it; NICE NG85 says offer enteric-coated pancreatin for unresectable disease and consider it before and after resection.
Will I be offered germline (inherited) genetic testing, and does it change my treatment or matter for my relatives?
Why: NICE NG85 asks teams to ask about first-degree relatives with pancreatic cancer; the OnCo record lists a germline panel among the tests; a BRCA result can open olaparib and starts a conversation about relatives.
Can I get a second opinion from a specialist pancreatic centre without delaying treatment?
Why: Cancer Research UK says you can ask your specialist or GP to refer you to a doctor or surgeon specialising in pancreatic cancer, and that arranging it through your specialist means your notes and results go with you; Pancreatic Cancer UK adds that different teams can disagree about whether surgery is possible.

Resectable or borderline: surgery first or chemotherapy first

Is my cancer resectable or borderline resectable, and what on the scan makes the difference?
Why: Cancer Research UK explains that borderline resectable means the cancer may be involving a main blood vessel, so it is less clear if surgery is possible; the OnCo subtype records describe the vessel contact that defines each class.
If it is resectable, why are you recommending surgery first (or chemotherapy first), and what does NICE say?
Why: NICE NG85 says only consider neoadjuvant therapy for people with resectable or borderline resectable pancreatic cancer as part of a clinical trial; Pancreatic Cancer UK says surgery is the best treatment for cancer that has not spread outside the pancreas.
If it is borderline, how many months of chemotherapy would I have before restaging, and what would make surgery possible or not?
Why: Cancer Research UK says you might have chemotherapy first to shrink the cancer, then a scan to help the surgeon decide; Pancreatic Cancer UK says the operation usually happens around 6 to 8 weeks after chemotherapy finishes and that a vein resection may be needed.
How many of these operations does this unit do each year, and what are its complication rates?
Why: Macmillan says only a specialist surgeon with experience in pancreatic cancer surgery does this operation and you may be referred to a specialist centre for it.
What can I do before surgery to recover faster, and is there a prehabilitation programme?
Why: Pancreatic Cancer UK says some hospitals offer prehabilitation focused on diet and physical activity, which can help you recover more quickly after surgery; Macmillan says stopping smoking before the operation lowers the risk of a chest infection.
What happens if the surgeon finds during the operation that the cancer cannot be removed?
Why: Pancreatic Cancer UK says the surgeon may switch to bypass surgery, which does not treat the cancer but can help symptoms; NICE NG85 says consider surgical biliary bypass and prophylactic gastrojejunostomy if the cancer is found to be unresectable during attempted resection.

Which chemotherapy: FOLFIRINOX, gemcitabine with nab-paclitaxel or NALIRIFOX, by fitness

Which chemotherapy do you recommend for me, and what about my fitness, my liver tests or my nerves made you choose it?
Why: NICE NG85 offers FOLFIRINOX to people with metastatic disease and a performance status of 0 to 1, gemcitabine combination therapy to those not well enough for FOLFIRINOX, and gemcitabine alone to those not well enough for combination chemotherapy.
Is NALIRIFOX an option for me, and is it funded where I am treated?
Why: In NAPOLI 3, NALIRIFOX improved survival over gemcitabine with nab-paclitaxel; the OnCo record lists it beside modified FOLFIRINOX for fit patients, but NHS funding follows NICE appraisals, so ask what applies locally.
Will I have a DPD blood test before fluorouracil or capecitabine?
Why: Macmillan and Cancer Research UK say you should have a blood test for DPD deficiency before these drugs, because low DPD raises the risk of severe or life-threatening side effects and the dose may be lowered.
Which side effects are most likely with my regimen, and what are the exact rules for ringing the 24-hour line?
Why: Macmillan's FOLFIRINOX page says to ring straight away for a temperature above 37.5 C or below 36 C, for diarrhoea 4 or more times a day or at night, or if anti-diarrhoea medicine has not worked within 24 hours; its nab-paclitaxel page uses 3 or more loose stools a day.
How will we know the treatment is working, and what is the plan if it stops?
Why: Pancreatic Cancer UK says you will have a scan every three months to see how the chemotherapy is working; NICE NG85 describes second-line options depending on what was given first.
Will I need a PICC line or port, and will I carry a pump home?
Why: Macmillan says FOLFIRINOX is given every 2 weeks with the fluorouracil running through a small pump for about 46 hours, and that you may have a PICC line put in for it.

Chemotherapy after a Whipple operation

Which chemotherapy after surgery do you recommend, for how long, and why that one for me?
Why: Pancreatic Cancer UK lists FOLFIRINOX, gemcitabine with capecitabine (GemCap) and gemcitabine alone after surgery, chosen by how well you are; in PRODIGE 24 modified FOLFIRINOX gave a median survival of 54.4 months against 35.0 with gemcitabine.
When does the chemotherapy need to start, and what if I have not recovered enough by then?
Why: Cancer Research UK and Pancreatic Cancer UK say adjuvant chemotherapy should start within 12 weeks (3 months) of surgery and lasts up to 6 months; NICE NG85 says start once the person has recovered and as soon as they are well enough to tolerate all 6 cycles.
Can eating, weight and my enzyme dose be sorted out first so they do not delay the chemotherapy?
Why: Pancreatic Cancer UK says to speak to your doctor, nurse or dietitian about digestion problems after surgery so they do not delay chemotherapy.
What did the pathology show about the margins and lymph nodes, and does it change what you advise?
Why: The OnCo record for resectable disease lists margin status (R0 versus R1) and lymph node ratio among the results that carry prognosis; ask what yours were.
What will follow-up look like after chemotherapy, and which symptoms should prompt an early call?
Why: Cancer Research UK says after surgery you usually have CT scans every 6 months for 5 years, with blood tests and sometimes tumour markers at each visit; NICE NG85 asks for ongoing specialist assessment for problems resulting from surgery.

Germline testing: what a BRCA result means for olaparib and for your family

Which genes will be tested, on blood or on the tumour, and how long will the result take?
Why: The NHS says a hospital specialist can arrange genomic testing on a sample already taken; the OnCo record lists BRCA1, BRCA2, PALB2, ATM, CDKN2A, STK11 and Lynch genes on the germline panel.
If I carry a BRCA variant, does olaparib apply to me, and is it funded on the NHS?
Why: In POLO, maintenance olaparib after at least 16 weeks of platinum chemotherapy lengthened the time before the cancer grew in germline BRCA carriers; NICE could not make a recommendation (TA750, terminated) because the company made no submission, so ask what is funded where you are treated.
Does a BRCA or PALB2 result change which chemotherapy you would give me?
Why: The OnCo subtype records note platinum-based chemotherapy is favoured where there is a BRCA or PALB2 variant; Macmillan says olaparib might be used after chemotherapy in BRCA-mutated pancreatic cancer.
If a variant is found, which relatives could be tested, and could they be offered monitoring?
Why: Pancreatic Cancer UK says NICE recommends monitoring for people with a BRCA1, BRCA2, PALB2 or CDKN2A variant and a first-degree relative with pancreatic cancer; NICE NG85 lists the surveillance criteria and the MRI/MRCP or EUS used.
What does a variant of uncertain significance mean for me and my family?
Why: The NHS says a test can reveal information about relatives that you or they did not know and that a genetic counsellor can talk this through; Pancreatic Cancer UK explains that having a gene variant does not always mean someone will develop cancer.

Jaundice: a stent or surgery

Does my jaundice need to be relieved before treatment, and how: a stent, or straight to surgery?
Why: NICE NG85 says offer resectional surgery rather than preoperative biliary drainage to people with resectable cancer and jaundice who are well enough and not in a trial requiring drainage; Pancreatic Cancer UK says if you are not fit enough yet, or will have chemotherapy first, you may need a stent.
Will the stent be plastic or metal, and will it need changing later?
Why: NICE NG85 says offer self-expanding metal stents placed by endoscopy for unresectable disease and for resectable disease when the person is not yet fit for surgery; Macmillan says plastic stents may need replacing and metal ones usually do not.
How long will the jaundice take to clear, and when can chemotherapy start?
Why: Pancreatic Cancer UK says it may take around two to three weeks for jaundice to go completely, that most people improve quite quickly, and that treating the jaundice may mean you can start or continue treatment for the cancer.
What are the signs of a blocked or infected stent, and exactly who do I ring, day or night?
Why: Pancreatic Cancer UK says stents can get blocked, move or cause infection or pancreatitis; the NHS says ask for an urgent GP appointment or use 111 if the whites of the eyes or skin turn yellow, and call 999 for the signs of sepsis.
Would a surgical bypass be better than a stent for me, and when is it done?
Why: NICE NG85 says offer metal stents rather than surgical bypass for unresectable disease and consider a bypass during an attempted resection if the cancer turns out to be unresectable; Pancreatic Cancer UK says bypass avoids the problem of stents blocking but is a big operation.

Pain, including a coeliac plexus block

What is causing my pain, and which painkillers and other medicines will we try first?
Why: Pancreatic Cancer UK says the cancer can press on a bundle of nerves called the coeliac plexus, causing pain in the tummy or back; Cancer Research UK lists paracetamol, weak and strong opioids, anti-inflammatories, and amitriptyline or gabapentin for nerve pain.
Am I a candidate for a coeliac plexus block, and how would it be done?
Why: NICE NG85 says consider EUS-guided or image-guided percutaneous neurolytic coeliac plexus block for people with uncontrolled pancreatic pain, unacceptable opioid side effects or escalating doses of analgesics; Macmillan describes the injection through the back or via an endoscope.
Could radiotherapy or the chemotherapy itself help my pain?
Why: Cancer Research UK says palliative radiotherapy can help control pain or bleeding into the duodenum, and that cancer treatments can ease pain by shrinking the cancer, though it can take several weeks.
What should I take for constipation and sickness from opioids, and what if the pain is not controlled between visits?
Why: Cancer Research UK says most opioids cause constipation so regular laxatives are given, and that sickness usually settles in a few days; Pancreatic Cancer UK says to ask for help early because early treatment makes pain easier to deal with.
Can the palliative care or pain team be involved now, alongside my treatment?
Why: Macmillan says palliative care teams are experts in controlling pain, tiredness, bowel changes and appetite loss and are based in hospitals, hospices, palliative care units and pain clinics; the NHS says the team works alongside your treatment.

Pancreatic enzymes and diabetes, after surgery or with the tumour

How much PERT should I start with, and how do I know if I am taking enough?
Why: Pancreatic Cancer UK says you might start with at least 50,000 or 75,000 units for a main meal and 25,000 or 50,000 for a snack, take half with the first mouthfuls and the rest through the meal, take more with larger or fattier meals, and keep a food diary; the UK consensus guideline (Phillips 2021) sets the same starting doses.
Who reviews my enzyme dose, and what if my symptoms do not improve?
Why: Pancreatic Cancer UK says most people need to increase from the starting dose and the dietitian, doctor or nurse should review it regularly; if symptoms persist a proton pump inhibitor, a different brand, or another cause such as bile acid diarrhoea or small intestinal bacterial overgrowth may be looked for.
What should I do if I cannot get my usual brand of PERT?
Why: NICE NG85 notes the 2024 supply disruption and points prescribers to the Specialist Pharmacy Service tool for equivalent products; Pancreatic Cancer UK says to contact your dietitian, hospital team or GP and has guidance on managing when short.
Do I have, or am I likely to get, type 3c diabetes, and who will look after it?
Why: Pancreatic Cancer UK says pancreatic cancer or surgery can cause type 3c diabetes, which differs from type 1 and 2, and that a diabetes specialist nurse and a specialist dietitian should be involved; a meta-analysis found about 16 in 100 people develop new diabetes after a Whipple operation.
If I need insulin, what do I do about low blood sugar, driving and the DVLA?
Why: Cancer Research UK says you will be taught what to do if your blood sugar drops too low; Pancreatic Cancer UK says if you take insulin you must tell the DVLA (or DVA in Northern Ireland) and cannot drive until they say you can.

Feeding and weight

Am I losing weight or muscle, and can I see a dietitian now rather than later?
Why: Cancer Research UK says most hospital pancreatic cancer teams include a dietitian; the ASCO cachexia guideline recommends dietary counselling and says no drug is established for cancer cachexia, so early nutrition support is the mainstay.
Should I be taking nutritional supplement drinks, and do I need enzymes with them?
Why: Cancer Research UK says supplements are available on prescription and can boost calories and protein; Pancreatic Cancer UK says to take PERT with nutritional supplements as well as with meals, snacks and milky drinks.
Do I need a special diet, and should I cut down on fat?
Why: Pancreatic Cancer UK says you do not need a special diet, there are no foods to avoid, and you should not reduce fat to manage symptoms but take more PERT instead; NICE NG85 says do not offer fish oils to manage weight loss in unresectable disease.
If I cannot eat enough after surgery, will I be fed through a tube, and for how long?
Why: NICE NG85 says for people who have had a pancreatoduodenectomy and have a functioning gut, offer early enteral nutrition including oral and tube feeding rather than feeding into a vein; Pancreatic Cancer UK says a nasojejunal tube may be used if the stomach does not empty normally at first.
What should I eat if I have a duodenal stent, and how do I keep it from blocking?
Why: Cancer Research UK says eat moist, soft, lower-fibre foods, little and often, chew thoroughly, add sauces and stay upright after eating; Pancreatic Cancer UK says you should be given diet information after the stent goes in.

A clinical trial or standard treatment

Is there a trial I could join now, what is the comparison arm, and is a placebo involved?
Why: The NHS says a placebo is used only where no proven standard treatment exists; Pancreatic Cancer UK says most pancreatic cancer trials are looking at treatment options and has a trial finder.
Do I need a biopsy or a tumour gene test to be eligible, and has tissue already been taken?
Why: Pancreatic Cancer UK says a biopsy is needed to confirm the diagnosis before chemotherapy or clinical trials; the OnCo record lists KRAS subtype, germline panel and fusion testing among the results that decide trial eligibility.
Are KRAS inhibitor trials open to me, and where?
Why: Pancreatic Cancer UK describes KRAS inhibitors such as daraxonrasib as a promising group of treatments; the OnCo record lists RAS inhibitor trials in first and second line.
What extra visits, tests and travel would the trial involve, and if I join and want to stop, what happens to my standard treatment?
Why: These are among the questions the NHS clinical trials page suggests asking; the NHS says you can leave a trial at any point without giving a reason and without it affecting your care.

Palliative care early, alongside treatment

Can the palliative care or symptom control team see me now, while I am having treatment?
Why: Pancreatic Cancer UK says palliative care services are not just for the end of life and are available at any point for cancer that cannot be cured; a randomised trial found early palliative care improved quality of life and mood alongside cancer treatment.
Who looks after my symptoms between hospital visits, and who do we ring at night or at the weekend?
Why: Macmillan says palliative care teams work with you, your GP and other professionals and many have home care services; the NHS says the clinical nurse specialist or palliative care team can help you and your loved ones get support.
Can we talk about what matters most to me, and record my wishes for care if I become more unwell?
Why: Pancreatic Cancer UK says the palliative care team can support you with making decisions about your future care and can also support your family; its end of life pages describe making plans about future care.
If I decide not to have chemotherapy, or cannot have it, what care will I still get?
Why: Pancreatic Cancer UK says some people are not well enough for treatment or decide not to have it, and that you can still have treatments to help with symptoms from your GP, community or district nurses and the palliative care team.

Surgeon appointment

Can the cancer be removed completely, which operation would that be, and what would be removed?
Why: Macmillan describes the Whipple's and modified (pylorus-preserving) Whipple's procedures for cancers in the head of the pancreas, distal pancreatectomy for the body and tail, and the rare total pancreatectomy.
Would I need chemotherapy before the operation, and how long after it would surgery be?
Why: Pancreatic Cancer UK says if the cancer is close to major blood vessels you may be offered chemotherapy first, with the operation usually around 6 to 8 weeks after it finishes.
What will recovery look like: intensive care, hospital stay, eating, driving, work?
Why: Pancreatic Cancer UK says the first 24 to 48 hours are in intensive care or high dependency, hospital is usually one to two weeks, full recovery takes several months to a year, driving waits a few weeks and work may take at least three months.
Will I need enzyme capsules, insulin or vaccinations after the operation?
Why: Macmillan says PERT is usually lifelong after surgery, that removing part or all of the pancreas can cause diabetes, and that if the spleen is removed you need lifelong vaccinations and possibly antibiotics.
If the cancer cannot be removed once you start, would you do a bypass, and would you talk to me about that beforehand?
Why: Pancreatic Cancer UK says if this might happen your surgeon will discuss it before your operation; NICE NG85 says consider biliary bypass and prophylactic gastrojejunostomy in that situation.

Oncologist appointment

What is the aim of the treatment you are proposing, cure or control, and for how long would I have it?
Why: Macmillan's questions page says your team should explain the aim, benefits, disadvantages and alternatives of any treatment.
Which regimen, how often, and which side effects are most likely for me? Which are reversible?
Why: Macmillan describes the schedules for FOLFIRINOX, GemCap and gemcitabine with nab-paclitaxel; Pancreatic Cancer UK says neuropathy is most common with FOLFIRINOX, FOLFOX or nab-paclitaxel and can get worse in the first months after treatment.
Do I need a blood-thinning injection or tablet during chemotherapy to prevent a clot?
Why: Pancreatic Cancer UK says your oncologist should consider whether you need blood thinning medicine during chemotherapy; NICE NG85 points to its venous thromboembolism guideline for people with pancreatic cancer.
How will we know if the treatment is working, and what would we do next if it stops working?
Why: Pancreatic Cancer UK says scans every three months; NICE NG85 describes oxaliplatin-based or gemcitabine-based second-line chemotherapy depending on what was given first.

Dietitian appointment

How much PERT should I take with meals, snacks and drinks, and how do I adjust it?
Why: Pancreatic Cancer UK gives the starting doses, the half-now-half-later rule, cool drinks only, more for fatty food, and a diet diary to find the right dose.
How much weight have I lost, what is my target, and which supplements suit me?
Why: Cancer Research UK says nutritional supplements are available on prescription and that some may affect blood sugar if you have diabetes, so ask which is right for you.
Which of my symptoms are digestion, which are the treatment, and which need another test?
Why: Pancreatic Cancer UK says if enzymes are not helping there may be another cause such as bile acid diarrhoea or small intestinal bacterial overgrowth, with tests and treatments for each.
Should I change what I eat for diabetes, a duodenal stent or after surgery?
Why: Pancreatic Cancer UK says there is no special diet for pancreatic cancer; Cancer Research UK gives the soft, low-fibre advice after a duodenal stent and says a dietitian follows you closely with diabetes.

Genomics appointment

Which genes are being tested, what are the possible results, and how will I get them?
Why: The NHS explains referral and consent for genomic testing; Pancreatic Cancer UK explains inherited and acquired variants in plain words.
Is any result actionable now, on the NHS or in a trial?
Why: The OnCo record lists olaparib for germline BRCA, zenocutuzumab for NRG1 fusions, pembrolizumab for mismatch repair deficiency and NTRK inhibitors; NICE TA750 was terminated, so ask what is funded.
Which of my relatives could be offered testing or monitoring, and is there a letter I can give them?
Why: NICE NG85 lists who should be offered or considered for surveillance; Pancreatic Cancer UK says you can speak to your GP about a referral to a genetics centre.

Palliative and supportive care appointment

What can be done about my pain, sickness, itch, tiredness and appetite, and who adjusts the medicines between visits?
Why: Macmillan lists these among the symptoms palliative care teams are experts in; Cancer Research UK says many teams have home care services.
What should my family watch for, and exactly who do we ring at night or at the weekend?
Why: The NHS gives the sepsis and jaundice wording; Pancreatic Cancer UK says a blood clot needs treating straight away and to go to A&E or call 999 if you cannot reach the team.
What help is available at home, from a hospice, or for money and work, and how do we ask for a carer's assessment?
Why: Pancreatic Cancer UK says an SR1 form can speed up benefit claims where cancer cannot be cured, and lists PIP, Attendance Allowance and Carer's Allowance; the NHS says any carer over 18 can ask the council for a free carer's assessment.
Can we talk about what matters most to me and record my wishes for care if I become more unwell?
Why: Marie Curie says palliative care can start at any stage and includes planning ahead; Pancreatic Cancer UK has pages on talking about dying and making plans for future care.

For carers

How can I be included in appointments and plans, and can I have copies of the treatment plan, the enzyme dose and the medicine list?
Why: Macmillan says to tell the healthcare team you are a carer so you can be part of the plans for going home; Pancreatic Cancer UK says learning about symptoms and who to ask for help is one of the best ways to help.
What are the signs of a blocked or infected stent, sepsis, a blood clot or a blocked bowel, and what should I do for each?
Why: The NHS, Pancreatic Cancer UK and Macmillan give the wording: fever or shivering, yellowing, vomiting large amounts, a swollen painful leg or sudden breathlessness, breathing fast, confusion, blotchy skin; the site's red cards quote them.
What support is there for me: a carer's assessment, Carer's Allowance, a break, or someone to talk to?
Why: The NHS says a carer's assessment is free for anyone over 18; Pancreatic Cancer UK has a booklet for carers and its nurses take calls from family members; Macmillan's line is open to carers.

Living with itPancreatic ductal adenocarcinoma

Living with it

Red cards

Questions to ask

Questions to ask your oncologist about Pancreatic ductal adenocarcinoma

Newly diagnosed

Resectable or borderline: surgery first or chemotherapy first

Which chemotherapy: FOLFIRINOX, gemcitabine with nab-paclitaxel or NALIRIFOX, by fitness

Chemotherapy after a Whipple operation

Germline testing: what a BRCA result means for olaparib and for your family

Jaundice: a stent or surgery

Pain, including a coeliac plexus block

Pancreatic enzymes and diabetes, after surgery or with the tumour

Feeding and weight

A clinical trial or standard treatment

Palliative care early, alongside treatment

Surgeon appointment

Oncologist appointment

Dietitian appointment

Genomics appointment

Palliative and supportive care appointment

For carers

Living with itPancreatic ductal adenocarcinoma

Living with it

Red cards

Questions to ask

Questions to ask your oncologist about Pancreatic ductal adenocarcinoma

Newly diagnosed

Resectable or borderline: surgery first or chemotherapy first

Which chemotherapy: FOLFIRINOX, gemcitabine with nab-paclitaxel or NALIRIFOX, by fitness

Chemotherapy after a Whipple operation

Germline testing: what a BRCA result means for olaparib and for your family

Jaundice: a stent or surgery

Pain, including a coeliac plexus block

Pancreatic enzymes and diabetes, after surgery or with the tumour

Feeding and weight

A clinical trial or standard treatment

Palliative care early, alongside treatment

Surgeon appointment

Oncologist appointment

Dietitian appointment

Genomics appointment

Palliative and supportive care appointment

For carers