Inherited cancer resources
Know your risk.
Know what's next.
About 1 in 10 pancreatic cancers are linked to an inherited gene change passed down through a family.
If pancreatic cancer runs in your family, or you've already been diagnosed and want to understand what it might mean for your relatives, or you simply want to understand your risk, Pankind has created this page to help you make an informed next step.
This page maybe helpful for you if:
- You have a close relative who has had pancreatic cancer
- You've been diagnosed with pancreatic cancer and want to understand your family's risk
- You've had genetic testing and are trying to work out what's next
If you'd like to learn more about inherited risk factors, visit Understanding Family History
Step 1: Know your family history
The first step is simply knowing what you can about your family's health history. You don't need to be a genetics expert, just gather what you know about relatives who've had pancreatic cancer or related cancers, on both sides of your family if possible.
What to note down for each relative:
- Their relationship to you (parent, sibling, aunt/uncle, grandparent, etc.)
- What type of cancer they had
- What age they were diagnosed
Helpful resources
Understand your family relationships
Find out whether someone is a first-, second- or third-degree relative and why it matters when assessing inherited cancer risk.
Family history mapping tool
A simple tool to help you record your family health history and identify patterns that may be important for your GP.
This tool was developed by Inherited Cancers Australia
Step 2: Understand your risk
Once you have a picture of your family history, Pankind's Family History Checker can tell you if your family history suggests an increased risk of pancreatic cancer. It's free, takes around three minutes and is based on national clinical guidelines.
Family History Checker
Worried about pancreatic cancer in your family? Answer a few quick questions about your family history to see if it may be linked to pancreatic cancer risk.
Having a family history of pancreatic cancer, or an inherited gene change, does not mean that you or your relatives will develop pancreatic cancer. It's information that can help guide your next step.
(source: eviQ, Pancreatic cancer (increased risk) – risk management)
Step 3: Speak with your GP
Your GP can help you understand your family history, discuss whether genetic testing may be appropriate and organise referrals if needed. Being prepared can make the conversation easier and help you discuss whether a referral to a Family Cancer Clinic or genetic testing may be appropriate.
Take your Family History Mapping Tool and Family History Checker results with you if you've completed them.
Helpful resources
Talking to Your GP
A practical guide to help you prepare for your appointment, with questions to ask, what to take with you, and what to expect from the referral process.
Step 4: Understanding your options for genetic testing
Not everyone who speaks with their GP will go on to have genetic testing - it is a personal choice, and your GP or a genetic counsellor can help you decide if it's appropriate for you. There are two types of genetic testing relevant to pancreatic cancer, and it helps to know the difference to know if either pathway is relevant to you:
- Tumour profiling looks at the cancer itself, to help guide treatment for someone already diagnosed.
- Germline (inherited) testing looks at the DNA you were born with, to understand risk that could be passed through your family. This is the one most relevant to this page
For more information about genetic testing, visit Genetic testing and pancreatic cancer
Considering genetic testing?
If you're considering genetic testing, there are different pathways available. Depending on your circumstances, your GP or specialist may refer you to a Family Cancer Clinic for genetic counselling and, if appropriate, genetic testing. Alternatively, you may choose to access testing privately. You may be eligible for publicly funded testing or choose to pursue private testing. The resources below explain the pathways, what to expect, and where to find reputable providers.
Genetic testing is a personal decision and there is no single right answer.
Publicly funded testing
You may be eligible for publicly funded testing if:
- You've been diagnosed with pancreatic cancer, regardless of your age or family history
- You have a strong family history, including a known gene variant, or several close relatives on one side with related cancers
Privately funded testing
Anyone can consider private genetic testing - you don't need to meet the criteria above. Private testing can also be a faster option if you'd rather not wait for a public referral. Many people who carry an inherited cancer risk have no family history of the disease, and most are never identified through routine care*.
If you decide to pursue private genetic testing, we encourage you to consider medical-grade genetic testing. Our Frequently Asked Questions section explains more about private genetic testing and how to find a private provider.
Helpful resources
Genetic testing pathway
Understand how the genetic testing process works, from referral and genetic counselling through to results, including information about public eligibility and private testing options.
Considering private genetic testing?
Anyone can consider private genetic testing. It can also be a faster option if you'd rather not wait for a public referral.
Step 5: Getting your results and understanding what's next
Genetic testing results usually take several weeks to arrive. Your clinician or genetic counsellor will explain what to expect and discuss your results with you, and answer any questions you may have.
If your result shows an inherited gene change, you're not alone — your genetic counsellor will talk you through what it means and what happens next. This usually includes options for surveillance, and the chance for close relatives to be tested too (called cascade testing), so your whole family has the information they need.
You may be eligible for screening programs like APRISE, a national screening study for individuals meeting the criteria for high risk. APRISE utilises surveillance through regular MRI or endoscopic ultrasound (EUS).
A positive result is information, not a diagnosis. It's something you and your doctor can use to make proactive and informed decisions about your health.
APRISE: Australia's national pancreatic cancer surveillance study
Pankind refers people who have an inherited risk of pancreatic cancer to the APRISE program, a national screening study for people at high risk. Those eligible for the study will receive regular monitoring through MRI or endoscopic ultrasound (EUS).
The program is evaluating whether regular surveillance can support earlier detection of pancreatic cancer and the effects of access to earlier intervention.
It’s the first of its kind in Australia and aims to build robust national data to support a long-term, government-backed screening program for those most at risk in Australia.
All resources
Family History Checker
Free three minute checker to assess family risk
Understand your family relationships
Find out whether someone is a first-, second- or third-degree relative and why it matters when assessing inherited cancer risk.
Talking to your GP about pancreatic cancer risk
A practical guide to help you prepare for your appointment, with questions to ask, what to take with you, and what to expect from the referral process.
Genetic testing and pancreatic cancer
More information on genomic profiling and germline genetic testing
Understanding family history
How family history affects pancreatic cancer risk
Contact Dianne, Support Navigator
on 1800 003 800 for information and find out about the services and support that may be available for you and your family.