Pancreatic Cancer Survivorship: Follow-Up Questions

This page is for people who have finished treatment for pancreatic cancer, and for their families. It covers the CA 19-9 test, follow-up schedules, digestion and blood sugar, lasting side effects, and who runs your care.

Most pancreatic cancer follow-up is about two separate things at once. One is watching for the cancer. The other is managing an organ that has been cut, irradiated, or both.

Those two jobs get mixed together at appointments. Separating them makes the visit more useful, because the questions and the people who answer them are different.

CA 19-9 is the blood test that gets watched. NCI's summary describes what it can do in unusually plain terms.

No tumor-specific markers exist for pancreatic cancer. Markers such as CA 19-9 have low specificity, which means they are not specific to this cancer. Most people with pancreatic cancer have an elevated CA 19-9 at diagnosis. Increased levels during or after definitive therapy may identify progressive tumor growth.

Then comes the sentence that matters most after treatment. The presence of a normal CA 19-9 level does not preclude recurrence.

Both halves are worth holding. A rising number is information. A normal number is not reassurance. Low specificity also means other conditions can raise the level.

NCI's pancreatic cancer treatment summary does not set a follow-up schedule. It names no interval for scans, no interval for CA 19-9, and no total duration.

What NCI does publish is general. Across cancers, people usually return every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that. NCI says each schedule differs, and depends on the cancer type, the treatment given, and the person's health.

ACS gives a pancreatic-specific description. For people with no signs of cancer remaining, many doctors recommend visits about every 3 months for the first couple of years. After that, visits are about every 6 months for the next several years. ACS says the schedule depends on the original extent of the cancer and how it was treated.

So the key question is what schedule this particular team has set, and what it is looking for at each visit. Ask for it in writing, in a survivorship care plan.

The pancreas does two unrelated jobs. It makes digestive enzymes, and it makes insulin. Surgery and disease can damage either.

NCI names the first problem directly. Malabsorption caused by exocrine insufficiency frequently contributes to malnutrition. Exocrine insufficiency means the pancreas no longer makes enough digestive enzymes. Pancreatic enzyme replacement can help relieve it.

ACS says many people need to take pancreatic enzymes in pill form to help digest food so it can be absorbed. ACS also says pancreatic cancer often causes weight loss and weakness from poor nutrition. A team of doctors and nutritionists can help you keep up your weight and nutrition.

Tell your team if your weight keeps falling or if eating has become hard. Ask whether your enzyme plan needs a change.

Blood sugar is the second half. ACS lists diabetes among the complications that can follow a Whipple procedure. After removal of the whole pancreas, people develop diabetes. So ask whether your blood sugar is being checked.

For people who had surgery followed by chemotherapy, the trial behind that decision is worth knowing, because its side effects can persist.

PRODIGE-24 randomized 493 people with R0 or R1 resections (see the glossary). One arm had six cycles of gemcitabine. The other had 12 cycles of FOLFIRINOX, a four-drug combination of oxaliplatin, leucovorin, irinotecan, and fluorouracil, given into a vein every 2 weeks with the fluorouracil running over about two days. The amounts are worked out from body size by the treating team, so they are not listed here.

Median disease-free survival was 21.4 months with FOLFIRINOX against 12.8 with gemcitabine. Median overall survival was 53.5 months against 35.5. Five-year overall survival was 43.2% against 31.4%.

The cost side is equally specific. Grade 3 or 4 toxicity occurred in 75.9% of the FOLFIRINOX group against 52.9% of the gemcitabine group. Thirty-three percent stopped FOLFIRINOX early, against 21% for gemcitabine. These figures come from the National Cancer Institute’s “Pancreatic Cancer Treatment.”

NCI's summary does not say which side effects last longest. Tell your team about any side effect that continues. If you have new or worsening numbness or weakness in your hands or feet, call your care team right away.

Two NCI-affiliated sources give different numbers here, and the gap is large enough to name.

The pancreatic cancer PDQ summary states an overall survival rate of less than 6%. SEER, which is also run by NCI, reports 5-year relative survival of 13.7% for 2016 to 2022, and 43.6% for cancer that was still localized at diagnosis.

The SEER figure states the years it covers. The PDQ figure does not give a year, so the two are hard to compare directly.

NCI lists jaundice, light-colored stools or dark urine, pain in the upper or middle abdomen and back, and weight loss for no known reason among the symptoms of pancreatic cancer. After treatment, these can also be signs of a problem. ACS says a blocked bile duct can cause jaundice. NCI lists surgical or radiological biliary decompression among the measures to relieve blockage of the bile duct.

• Call 911 or go to the nearest emergency department if you vomit blood or material that looks like coffee grounds, your stools are black and tarry, you pass a lot of blood in your stool, bleeding will not stop, you feel lightheaded or dizzy from bleeding, you have chest pain or trouble breathing, or you have severe belly pain along with bleeding. MedlinePlus lists most of these as emergency signs of gastrointestinal bleeding.
• Call your care team right away if your skin or the whites of your eyes turn yellow, your urine turns dark, or your stools turn pale.
• Call your care team right away if you have new or worsening pain in the upper abdomen that spreads to your back.
• Call your care team right away, day or night, if your temperature is 100.4°F (38°C) or higher after pancreatic or bile duct surgery or a biliary procedure, or while you are having chemotherapy. CDC tells people on chemotherapy to call right away for this temperature, and says fever is sometimes the only sign of infection. Chills, sweats, a new cough, a sore throat, burning when you pass urine, or any other sign of infection are also reasons to call right away, even without a fever. NCI says infections during cancer treatment can be life threatening and need urgent medical attention. For an emergency, call 911 or go to the nearest emergency department.

Follow-up care after this disease can involve more than an oncologist. ACS says a team of doctors and nutritionists can help with nutrition. A primary care doctor keeps routine care going, which NCI says should continue alongside cancer follow-up. Notes need to move between them, and NCI notes that research has found tests and treatments from one doctor are not always shared with another.

For related ground, see pancreatic cancer, watching for cancer recurrence, and fear of recurrence.

• NCI PDQ — Pancreatic Cancer Treatment (Health Professional Version)
• NCI — Follow-Up Medical Care
• SEER Cancer Stat Facts — Pancreatic Cancer
• ACS — Living as a Pancreatic Cancer Survivor
• ACS — Surgery for Pancreatic Cancer
• MedlinePlus — Gastrointestinal bleeding
• CDC — Fever and cancer treatment
• CDC — Signs and symptoms of infection in cancer patients
• NCI — Infection and Neutropenia during Cancer Treatment