Charity launches first-of-its-kind tool to check potential inherited risk of pancreatic cancer

Families who have lost a loved one to pancreatic cancer can assess their risk of inheriting the disease through a new first-of-its-kind online tool, created by the charity Pancreatic Cancer UK, which launched today (Wednesday 11^th September). Pancreatic cancer is incredibly challenging to diagnose at an early stage, leading to poor survival rates. Supported by NHS England, The Family History Checker will help to identify people with inherited risk of the disease and refer them for regular monitoring – giving them the very best chance of being diagnosed early.    

NHS England supported Pancreatic Cancer UK, investing £100,000 in The Family History Checker. The objective is to improve rates of earlier diagnosis by raising awareness of inherited risk and to help signpost eligible people to the surveillance programme - The European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer [EUROPAC].

Of the 10,500 people diagnosed with pancreatic cancer in the UK each year, one in 10 cases are inherited (1). Pancreatic cancer has the lowest survival rate of all common cancers, with more than half of people dying within three months of diagnosis (2). ­It is difficult to detect at an early stage due to limited diagnostic tests and many of the symptoms being common to other conditions, for example back and stomach pain, indigestion and unexpected weight loss. As a result, 80 per cent of people with pancreatic cancer are not being diagnosed until later stages when curative treatment may not be possible.

Members of the public are invited to use the Family History Checker. When completing the Family History Checker they will be asked three simple questions covering: their family history of pancreatic cancer, other genetic conditions associated with the disease and pancreatitis. Answers from these will help to identify who should be referred onwards for further risk assessment through a research study known as EUROPAC. EUROPAC, which began in 1997 and is funded by Pancreatic Cancer UK, maintains a registry of people with a family history of pancreatic cancer, as well as people who have been diagnosed with hereditary pancreatitis.

People referred from the Family History Checker will be asked to provide more information about their family history by the EUROPAC team. Each case is then reviewed to identify those who should be invited to receive annual monitoring, where they will be given regular blood tests and scans. This will ensure changes to the pancreas can be spotted earlier, giving people the very best chance of having lifesaving treatment if they do develop pancreatic cancer.

Crucially, the vast majority of people won’t have increased inherited risk and will be able to receive reassurance for the first time. The Family History Checker will signpost those with no increased inherited risk to symptoms information to be aware of, and details of the Pancreatic Cancer UK Support Line should they ever need to speak to the charity’s team of specialist nurses.

Rachel Smith, 42, knows exactly what it’s like to be concerned about inheriting the disease, after two of her family members were diagnosed with pancreatic cancer. In 2017 her dad, Michael, was diagnosed just before he turned 65. He was initially told he was terminal but, fortunately, a specialist from another hospital reviewed his case and soon after Michael had the 12-hour surgery that would save his life. Three years later, Rachel’s brother, Jim, was also diagnosed with pancreatic cancer. Delays caused by the pandemic meant Jim went from potentially operable to inoperable. He died just eight months after diagnosis, aged 43, leaving behind a young family.

Rachel said: “When Jim was first diagnosed, a potential genetic link was more of an afterthought. We were initially just hopeful – hopeful as we’d been through it all before with Dad. It’s not until after Jim passed that we thought about the possibility of a link.”

After her brother’s death, Rachel enquired about genetic testing. She was invited to receive an annual blood test and was provided with direct contact details for a specialist, should she ever start to experience symptoms. 

Rachel said: “Being invited for a yearly check-in is reassuring, and it’s good to know these programmes are in place for the next generation, for Jim’s children and mine. Jim was diagnosed at the age of 43 – if he had been on a surveillance programme, maybe the changes in his pancreas would have been noticed earlier. Getting those at most risk on to these programmes as early as possible will make a huge difference. There is simply nothing that can be done if it’s too late.”

To meet criteria for inherited risk, a person could have:

• One or more relatives with pancreatic cancer on the same side of the family
• A family with a genetic condition linked to pancreatic cancer and at least one case of pancreatic cancer in the family
• Been diagnosed with hereditary pancreatitis

To use the online Family History Checker for pancreatic cancer, visit:  https://www.pancreaticcancer.org.uk/family-checker/

Diana Jupp, CEO of Pancreatic Cancer UK, said:

“Pancreatic cancer is a devastating disease and once someone in your family has been affected, it’s hard not to become fearful for yourself and others in your life. We are so proud to be supported by NHS England on this project, which will help alleviate anxiety around inherited risk of the disease and identify the people who most need regular monitoring.

“It is now vital that as many people as possible use the Family History Checker, so that everyone who should be referred for regular monitoring is found. The earlier pancreatic cancer is spotted, the more likely it is that people will be able to have lifesaving treatment. By reaching more people, lives could be saved.”

Professor Peter Johnson, NHS National Clinical Director for cancer, said:

“This new Family History Checker is a great tool for families where someone has had pancreatic cancer and will help the NHS to identify and support people at risk from it.

“I know it can be daunting to find out if you are at risk of pancreatic cancer, and some people may feel they’d rather not know, but finding out early means people can get the support they need from the NHS.

“We want as many people as possible to take advantage of this new tool, so they can be provided with further testing, surveillance or treatment as early as possible, if your results show you might need them.”

The new Family History Checker will empower members of the public to assess if they have an inherited risk of pancreatic cancer. A new poll of 1,000 GPs conducted by Savanta ComRes on behalf of Pancreatic Cancer UK suggests that knowledge of inherited risk of pancreatic cancer is low amongst primary care professionals. Two thirds (66%) of GPs were aware that pancreatic cancer carries hereditary risk factors but just 10% said they knew where to refer a person who had inherited risk for further surveillance. As this cancer is so challenging to detect early, raising awareness of inherited pancreatic cancer amongst healthcare professionals is imperative in reaching those who should be regularly monitored for the disease.