Rachel Smith has annual tests after her dad and brother were diagnosed (Image: Rachel Smith)
Families who have lost a loved one to pancreatic cancer are being urged to check their risk of inheriting the disease using a first-of-its-kind online tool.
Often diagnosed late, the disease has the lowest survival rate of all common cancers, with more than half of people dying within three months of diagnosis.
The tool, developed by Pancreatic Cancer UK and backed by the NHS, asks simple questions about a person’s family history of pancreatic cancer, other associated genetic conditions, and pancreatitis.
It then identifies people who should be referred for further assessment in a research study, which will decide whether they need regular monitoring.
NHS England invested £100,000 in The Family History Checker. National clinical director for cancer Professor Peter Johnson said it would “help the NHS to identify and support people at risk from it”.
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Pancreatic cancer has the worst survival rate of common cancers (Image: Getty)
He added: “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.”
More than 10,500 people are diagnosed with pancreatic cancer each year in the UK, and one in 10 cases are inherited.
It is difficult to detect early due to limited diagnostic tests and symptoms such as stomach pain, indigestion and unexpected weight loss, which can be confused with other conditions.
Eight in 10 cases are currently found in the later stages when curative treatment may not be possible.
People are considered to have inherited risk of pancreatic cancer if they have more than one relative on the same side of the family with it, they have a genetic risk factor such as carrying the BRCA1 or BRCA1 genes and one family member with it, or they have been diagnosed with hereditary pancreatitis.
Patients flagged by the online tool will be asked to join the EUROPAC study, which has been running since 1997.
It maintains a registry of people with a family history of pancreatic cancer or hereditary pancreatitis.
Each case is reviewed by specialists to identify those who should be offered annual monitoring, including regular blood tests and scans. This allows early signs of pancreatic cancer to be spotted sooner.
Diana Jupp, Pancreatic Cancer UK chief executive, 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.”
You can use the Family History Checker here.
Rachel with her daughter Lillian and dad Michael, who was treated (Image: Rachel Smith)
‘Regular tests could help prevent tragedy for the next generation.’
Rachel Smith, 42, has annual tests to check for early signs of pancreatic cancer after her dad was diagnosed and her brother died from the disease aged just 43.
Her father Michael was diagnosed in 2017 just before his 65th birthday. He was initially told his condition was terminal but a 12-hour surgery saved his life.
Three years later, Rachel’s brother Jim was diagnosed. Delays caused by the pandemic meant his condition progressed from operable to inoperable and he died eight months later, leaving behind a young family.
Mum-of-two 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.”
Rachel has annual blood tests which look for a known tumour marker called CA19-9, which can sometimes indicate pancreatic cancer.
She also has yearly MRI scans of her pancreas. Rachel added: “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.”