Understanding family history of pancreatic cancer

• You don't need a referral or a medical background — the checker is free, private, and takes just a few minutes to complete.

• Anyone who has a close family member — such as a parent, sibling or child — who has been diagnosed with pancreatic cancer, may want to take the checker to assess their risk of developing pancreatic cancer.

• Based on your answers, the checker gives you an indication of whether your family history suggests an elevated, or high risk of developing pancreatic cancer.

• It looks at factors such as how many relatives have had pancreatic cancer, their relationship to you, and the age they were diagnosed.

• The checker is built on national clinical guidelines — the same benchmarks used by health professionals across Australia to assess family history risk. It is not a personalised medical assessment and does not take into account your individual health history or circumstances.

• The checker does not diagnose cancer, and a result showing elevated risk does not mean you will develop the disease — it simply helps you understand your situation and take informed next steps.

• Your results are private and will not be shared with anyone unless you choose to discuss them with your doctor.

• The checker is a guide. It follows national population guidelines for pancreatic cancer risk — the same guidelines used by doctors across Australia.

• Because it follows these guidelines, it gives a general picture of risk based on family history patterns.

• Two people with very similar family histories might be in quite different situations individually. Think of the checker as a helpful first step, not a final answer.

• For advice tailored to your specific situation, your GP is the right starting point.

• That's completely okay — many people don't have a complete picture of their family's medical history, and the checker is designed with that in mind.

• Answer what you can with the information you have. A partial response will still give you a useful indication based on what is known.

• If you'd like to fill in some gaps, it can help to speak with older relatives who may remember more details, or to check whether any family members have copies of medical records or pathology reports.

• Inherited Cancers Australia has developed a Family Health History Mapping Form — a simple tool to help you collect your family health history to discuss with your GP and understand more about your personal level of cancer risk. 

• Family history can change over time. If another relative is diagnosed with pancreatic cancer, or you learn new information about your family's cancer history, we recommend completing the checker again. Changes to your family history may affect your result and the advice that is appropriate for you.

• If your result suggests you are not at a higher risk based on your answers, there is no immediate action needed — but it's always worthwhile staying aware of the signs and symptoms of pancreatic cancer.

• If your result suggests you may be at higher risk based on your answers, you may want to discuss a surveillance program with your GP. The APRiSE High-Risk Screening Program is a national study offering regular monitoring such as MRI scans for people at high risk of pancreatic cancer — you may be eligible.
  
  

• We encourage booking an appointment with your GP to talk through your family history and any concerns about inherited risk. Your GP may refer you to a Family Cancer Clinic, where a genetic counsellor can provide specialist guidance and help

• Please feel free to share the Family History Checker with other family members or if you know someone else who may be concerned about their family history . It could be the first step towards understanding their risk and accessing the right support.

• Pankind's Support Navigator Dianne is also available to help you understand your results and figure out your next steps — call 1800 003 800 or email info@pankind.org.au.

• A lower-risk result is genuinely reassuring for most people — but we understand that numbers on a screen don't always quiet a worried mind, especially if you've watched a family member or loved one go through pancreatic cancer.

• If you're still concerned after getting your result, please don't sit with that worry alone. Book an appointment with your GP and tell them how you're feeling — they can talk through your family history with you personally and help put your mind at ease, or take further steps if they think it's warranted.

• You can also call Pankind's Support Navigator Dianne on 1800 003 800 — she is there for exactly this kind of conversation.

• A result from the checker is a starting point, not the final word on your health.

No. Having a family history of pancreatic cancer, or carrying a gene change associated with the disease, does not mean you will definitely develop it.

It does mean your risk is higher than average, which is why knowing this information is valuable — it allows you and your doctor to make proactive decisions about monitoring.

No. Having a family history of pancreatic cancer or carrying an inherited gene change associated with the disease does not mean you will definitely develop pancreatic cancer.

It does mean your risk is higher than average, which is why knowing this information is valuable — it allows you and your doctor to make proactive decisions about monitoring.

• Before your appointment, write down everything you know about your family's cancer history — including who was diagnosed, what type of cancer they had, and how old they were at the time.

• Let your GP know you have completed Pankind's Family History Checker and share your result — this gives them a useful starting point for the conversation. You can download your result as a PDF and take this along with you.

• You can ask your GP about a referral to a Family Cancer Clinic if you would like to speak with a genetic counsellor about your personal risk. A genetic counsellor can discuss with you whether genetic testing might be appropriate for you or your family members.

• You can also ask about the APRISE High-Risk Screening Program, which offers regular surveillance for people at high inherited risk of pancreatic cancer.

Most people don't know if they carry a gene mutation unless they've had genetic testing. Carrying a gene mutation that increases pancreatic cancer risk — such as BRCA1, BRCA2, PALB2 or Lynch syndrome — usually has no symptoms, so you wouldn't know without a test.

There are a few ways you might find out:

• A family member has been tested and found to carry a mutation, which means you may have inherited it too.

• Your specialist or doctor has recommended genetic testing based on your personal or family history of certain cancers — breast, ovarian, bowel, and pancreatic cancer can all be linked to the same gene changes.

• You've sought genetic testing yourself through a GP referral to a Family Cancer Clinic, or in a private setting.

If you're unsure whether genetic testing is relevant for you, speak to your GP. They can review your family history and refer you to a genetic counsellor if appropriate — it's a straightforward conversation and you don't need to have all the answers before you go.

• Yes. The information you enter into the checker is confidential and used only to generate your result. Only the outcome of the tool is captured, not your specific answers to questions.

• Your results are not sent to your GP or any health authority automatically — you are in control of who you share them with.

• If you have questions about how your data is handled, visit pankind.org.au/privacy-policy.

• APRISE is Australia's first national high-risk pancreatic cancer screening study. It offers regular monitoring — such as MRI scans and endoscopic ultrasound — to people with an inherited risk of pancreatic cancer.

• The program is available at hospitals across New South Wales, Tasmania, Queensland, South Australia, Western Australia, and Victoria.

• To find out if you are eligible, contact Pankind directly on 1800 003 800. More information is available at pancreaticcentre.org.au/APRISE.