What should I do if I think I have a family history of pancreatic cancer?

If you think you might have a family history of pancreatic cancer, talk to your doctor, especially if you have any worrying symptoms.

What's in the 'Family history' section?

Give your doctor as much information as possible about any pancreatic cancer or family cancer syndromes in your family. Ask whether you should be referred:

Is screening available for people with a family history of pancreatic cancer?

Screening aims to identify people who will get a disease before they get any symptoms. The aim is to pick up cancers early, which means treatment may be more successful. At the moment there is no screening programme in the UK for pancreatic cancer because there isn’t a test for pancreatic cancer that is reliable and accurate enough. But NICE guidelines do recommend monitoring for people at higher risk of pancreatic cancer. This includes some people with a family history.

People with a family history of pancreatic cancer may also be able to take part in the EUROPAC study. This study monitors people with a family history of pancreatic cancer (pancreatic ductal adenocarcinoma). It is also monitoring people with hereditary pancreatitis. It aims to develop a way to screen for pancreatic cancer in people who may be at higher risk.

What do the NICE guidelines recommend?

The National Institute for Health and Care Excellence (NICE) guidelines for pancreatic cancer recommend that monitoring for pancreatic cancer (pancreatic ductal adenocarcinoma) should be offered to people with:

NICE also recommend that monitoring for pancreatic cancer should be considered for people with:

  • two or more first degree relatives with pancreatic cancer, across two or more generations
  • Lynch syndrome and any first degree relatives with pancreatic cancer.

Monitoring means having regular MRI/MRCP (magnetic resonance cholangio-pancreatography) or EUS (endoscopic ultrasound) scans. People with hereditary pancreatitis should be offered CT scans rather than MRI/MRCP or EUS. Read more about these scans.

If you think you fit any of these groups, speak to your doctor about being monitored.

Can I have a genetic test for pancreatic cancer?

People with familial pancreatic cancer may be referred to a specialist genetics clinic. If you have a genetic condition in the family that is linked to a higher risk of pancreatic cancer (family cancer syndrome), you may also be referred.

The genetics clinic will work out how likely it is that there is a faulty gene in the family. Depending on this risk assessment you may be:

  • offered a genetic test if you do have a higher risk and if a test is appropriate
  • told you have a higher risk but that genetic testing isn’t appropriate, based on your family history or because you have no living relative with pancreatic cancer who can be tested first
  • told that you aren’t at any higher risk than the general population.

Genetic tests look for faults in the few genes that we know can be linked to familial pancreatic cancer. Testing is usually first offered to someone in the family who has developed cancer. If a genetic fault is found, relatives who don’t have cancer can be offered a blood test to look for the same genetic fault.

If you are referred to a genetics clinic, you should first be offered a genetic consultation with a genetic counsellor or genetics doctor. They will provide information about an inherited condition, and the risk of developing it or passing it on. This helps to prepare you for what it means if you find out you have a faulty gene that greatly increases your risk of pancreatic cancer.

If you are offered a genetic test after you have talked to a specialist, it is up to you to decide whether to have it. You can take as much time as you need to decide.

If the test shows that you have a fault in a gene that may cause pancreatic cancer, you should then be told about regular monitoring. This may be through the EUROPAC research study.

If you are referred to a genetics clinic it’s helpful to find out the following information beforehand:

  • how everyone in the family is related to you and to each other
  • how old each relative with pancreatic cancer is and their age when they were diagnosed
  • what other cancers have been diagnosed in the family.

Questions to ask your doctor

To get the most out of your genetics consultation you might also want to think beforehand about questions to ask the genetic counsellor. You might find these questions helpful.

  • What is my risk of getting a particular cancer and what is the general population risk?
  • How accurate are the tests that you do?
  • Can I do anything to reduce my risk?
  • Who else in my family can be offered testing to see if they are at greater risk?
  • What about the risk to my children?
  • Will a test and monitoring be automatically offered to me?
  • If not, what should I do?
  • What support will I receive once I get the results of the test?

Questions about family history?

You can speak to our specialist nurses on our Support Line with any questions about family history, or the EUROPAC study.

Speak to our nurses

Published June 2022

To be reviewed June 2025