“I’d always been led to believe the HSE would look after you if there was something wrong with you – how wrong was I? If I had private health insurance, I’d have gotten quick access to that. It’s borderline criminal.”
James Hastings was diagnosed with bile duct cancer, also known as cholangiocarcinoma, in 2023 at age 41. The father-of-three from Galway developed jaundice in May 2023 and underwent tests in University Hospital Galway for three weeks, with doctors initially suspecting that he had gallstones.
“Just shy of three weeks in hospital, the consultant I was under the care of came in and said that bringing my wife into the room would be a good idea, so he brought her in,” says James. “The consultant sat on the bed beside me, my wife sat on a chair, and there were three or four junior doctors standing behind the curtain.
“The doctor started doing a load of scribbles on a piece of paper, saying, ‘And this is the problem here, and your bile duct is doing this’, but he hadn’t said the word ‘cancer’. So, I said, ‘Are you telling me I have cancer?’. And he said yes. My wife went pale and nearly passed out, it was such a shock to her.
“I had an upper GI cancer, but I thought that, in this day and age, cancer is treatable and curable. I told my consultant I’d do whatever it took to beat this cancer, he just had to tell me what to do. He said there’d be no harm in me googling the type of cancer I had and having a look.”
When James googled his cancer, which was stage four, he learned that it was rare and the prognosis wasn’t good. At his next appointment in UHG, James asked his oncologist what his treatment plan would be, and he was told palliative chemotherapy was his only option.
James decided to get genomic profiling, which showed he would be a good candidate for immunotherapy. His oncologist told him that, as a public patient, immunotherapy wasn’t within the remit of the HSE.
“He said it’s available to patients with private health insurance. I was angry that the HSE wouldn’t fund it, but I was hopeful because it was something other than palliative chemotherapy. It was the best standard of care for me but wasn’t available on the public system.”
James began documenting his experiences on Facebook for the locals in his community in Kinvara, as he’s a well-known businessman and people were curious about how he was doing. He shared his need to privately fund his treatment, and some locals set up a GoFundMe to help James to achieve this.
“I gave them an outline of what my costs would be. We realised I’d need around €250k to give me a fighting chance, so they set up the GoFundMe with that target. When it was launched, it got a lot of national media coverage. Within the span of three weeks, a quarter of a million euro was raised. It was totally mind-blowing.”
James had immunotherapy in London every three weeks for ten months, until it was found that his cancer had progressed. He’s now undergoing rechallenge treatment which is having a positive impact.
“I did a lot of research and read a lot of medical papers, and decided to do a rechallenge treatment to see if it would have an effect,” he says. “I spoke to a doctor in Germany, another in Ireland, and one in the US, and they all agreed that rechallenge treatment was a good option for me. I’ve done six cycles so far and the treatment seems to be working, which is incredible. The most recent scan I had showed that the cancer is under control.”
James is sharing his story to show that there is hope after a cancer diagnosis, and to highlight World Cholangiocarcinoma Day.
“The biggest thing for World Cholangiocarcinoma Day (February 20) is to know you’re not alone. There are communities out there like Cholangiocarcinoma Support Ireland, the Cholangiocarcinoma Foundation in America, and the AMMF in the UK – there are support groups all over the world for people with cholangiocarcinoma.”
