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. Give them as much information as possible about any pancreatic cancer or family cancer syndromes in your family.
Discuss your situation with them, and 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. Although there is no NHS screening programme for pancreatic cancer, NICE guidelines recommend monitoring for people at higher risk.
People with a family history of pancreatic cancer may also be eligible to take part in the European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer (EUROPAC) study. This study is looking at the genetic causes of familial pancreatic cancer. It is also looking at hereditary pancreatitis. It aims to develop a way to screen for pancreatic cancer in people who may be at higher risk.
The National Institute for Health and Care Excellence (NICE) guidelines for pancreatic cancer recommend that monitoring for pancreatic cancer should be offered to people with:
- hereditary pancreatitis and a fault in the PRSS1 gene
- faults in the BRCA1, BRCA2, PALB2 or CDKN2A (p16) genes and one or more first-degree relatives with pancreatic cancer
- Peutz–Jeghers syndrome.
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.
If you think you fit any of these groups, speak to your doctor about being monitored.
Genetic tests look for faults in the few genes that we know can be linked to familial pancreatic cancer. If you have a family history of pancreatic cancer, genetic testing may be available. 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.
People with familial pancreatic cancer, or a genetic condition in the family that’s linked to an increased risk of pancreatic cancer, should first be offered a genetic consultation. If appropriate, they will then be offered genetic testing. The genetic consultation will be 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 people for what it means if they find out they have a faulty gene that greatly increases their risk of pancreatic cancer.
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.
The genetics clinic can then 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 an increased risk and if a test is appropriate
- told you are at increased 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.
If you are offered a genetic test, after you’ve talked to a specialist it’s up to you to decide whether or not 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.
Questions to ask
To get the most out of your consultation you might also want to think of 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?
- Will a test and monitoring be automatically offered to me?
- If not, what should I do?