A woman who lost her brother to cancer three years after her dad was also diagnosed has shared her story to highlight a new first-of-its-kind online tool.
Rachel Smith, 42, from Northallerton, has had her life devastated by cancer after her dad was diagnosed with pancreatic cancer and survived but her brother was later diagnosed and died.
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 was wheeled down to 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, including his sons Jamie and Harry.
But from tragedy for the Northallerton resident comes hope for other families, after Rachel has backed a new online tool that enables people to assess their risk of inheriting the disease.
Developed by charity, Pancreatic Cancer UK and 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.
Of the 10,500 people diagnosed with pancreatic cancer in the UK each year, one in 10 cases is inherited. Pancreatic cancer has the lowest survival rate of all common cancers, with more than half of people dying within three months of diagnosis, according to data.
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 most at 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.”
Members of the public are invited to use the Family History Checker.
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.
To meet the 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
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."
Professor Peter Johnson, NHS National Clinical Director for cancer, said: “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.”
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