Liver cancer survivor fronts campaign calling for better care

A man in remission from a little known type of cancer has become one of the faces of a campaign to improve treatment alongside Dame Zandra Rhodes.

Benjamin Carey, 55, wants to secure better treatment for those with the disease and joined the fashion designer to pose for famed photographer Rankin.

Carey, from Edinburgh, was diagnosed with cholangiocarcinoma in 2023 after he was misdiagnosed with pancreatic cancer six months prior.

Cholangiocarcinoma, the second most common form of liver cancer, remains relatively unheard of.

It was previously thought to only affect those over 65, though recent research shows the figures are rising in healthy adults of working age.

Unlike the other more well-known type of liver cancer, hepatocellular carcinoma, the cause of cholangiocarcinoma is not known, and has either vague or no symptoms in its early stages, meaning diagnoses are often missed or caught too late.

Carey, a sustainable tourism consultant, is heading to the House of Commons on February 26 and to the Scottish Parliament on June 11 in support of UK cholangiocarcinoma charity AMMF’s Rethink Liver Cancer campaign, which aims to secure a “fairer” and faster deal for NHS patients with the disease.

In England, the NHS funds the molecular profile tests needed to help define how cholangiocarcinoma should be managed and who can benefit from targeted drug therapies, testing for 12 abnormalities.

Although similar testing for patients in Scotland has been agreed, the charity said NHS Scotland has not provided the funding for the full testing programme and currently only supports testing for two abnormalities, meaning patients with this cancer in Scotland are denied access to targeted treatments unless they pay privately for additional tests.

In October last year, Ben Macpherson, MSP for Edinburgh Northern and Leith, raised Mr Carey’s concerns regarding a lack of funding for testing that could speed up diagnoses and treatment.

While Carey has been told he is now in remission, his tumour was never tested due to the lack of funding in Scotland.

He said: “Knowing the molecular profile of my cancer would help my oncologist identify treatments quickly if I have a recurrence, without me losing valuable time waiting for test results.

The faces of this year’s AMMF cholangiocarcinoma campaign PA Media

“I’m lucky in that I’ve been told I’m in remission after surgery and potentially even cured, but I know other patients who have spent their savings on tests to access treatment because they were not funded by the NHS in Scotland.”

He was diagnosed after a series of tests as he began having cramps in his feet, and his blood-sugar levels were double that of what is considered normal.

As he was admitted to a liver ward for a CT scan and biopsy, he was brought back to the ward.

He said: “I was taken into a side room where the liver consultant told me that I had a large lesion on my pancreas. A cancer tumour was touching my portal vein making it inoperable and I potentially had less than six months to live.

“I knew people who had had problems with their pancreas and feared I might not even make it to Christmas.”

Despite his misdiagnosis, he survived after receiving treatment and later had the tumour removed.

He said: “In June, the surgeon called to tell me that the tumour had been successfully removed and all the nodes were clear, but that actually I didn’t have pancreatic cancer and instead had a late-stage cholangiocarcinoma tumour. I had never heard of cholangiocarcinoma and suddenly had to read up on a totally different cancer.

“I want to help make sure that people who come after me have an easier time than I had in their diagnosis and treatment journey.”

In addition to funding, Carey says collating and streamlining data on the number of UK patients with the disease could be beneficial.

He said of meeting Dame Zandra, who has battled the same condition, for the Rankin photoshoot: “It was fun, with Zandra it was a reminder that anyone can get cancer.

“We had a really nice day, the eight of us being photographed, and we were able to bond over for the moment – surviving.

“Some of my fellow patients, my friends, they’re probably not cured.

“We can still bond over being human, going through a journey where we’ve had a very nasty diagnosis and were all going to have different outcomes, but it’s fun to be alive for now.”

AMMF chief executive Helen Morement said: “The current lack of NHS funded testing for patients in Scotland compared with England is further evidence of harmful geographical inequality that prevents access to treatment that can improve a person’s chances of survival from months to years after a diagnosis.”

The Scottish Government was contacted for comment.