A 34-year-old woman from Lanarkshire, Scotland, initially dismissed recurring stomach pains as indigestion, only to be diagnosed with cholangiocarcinoma, a rare and aggressive form of liver cancer. Louise Wallace’s experience underscores a growing concern about the disease, as cases in Scotland have increased by 62% over a 22-year period, from 2001 to 2023.
Paul Howard, head of policy and research for the cholangiocarcinoma charity AMMF, emphasized the need for increased awareness of the cancer. “It’s a primary liver cancer but it doesn’t typically present itself in people with chronic liver disease, so there is not a defined at risk population,” Howard stated. “We are seeing an increasing amount of young people being diagnosed with this, and awareness is very important – we need to be able to diagnose this cancer earlier. It presents very few symptoms in the early stages and those can be vague.”
Wallace’s diagnosis came after her partner, Fraser, encouraged her to seek medical attention for the persistent discomfort. She initially attributed the pain to a flare-up of her existing ulcerative colitis. Blood tests and subsequent scans revealed the presence of the cancer. She recounted the speed of the diagnosis as “terrifying,” particularly during the height of COVID-19 restrictions when hospital visits were limited.
Now cancer-free following surgery, Wallace is sharing her story to advocate for greater recognition of cholangiocarcinoma’s often subtle symptoms. She noted the isolating experience of navigating cancer treatment and support groups where few others shared her specific diagnosis. “It can be quite isolating,” she said. “I’d move to support groups for cancer survivors and it was quite rare to meet anyone who would had the same symptoms and even now, if I start itching, I get anxiety in the back of my head that it’s coming back.” Despite lingering anxieties, she expressed gratitude for her doctor’s proactive approach to testing, highlighting the importance of early detection.
AMMF actively funds research aimed at understanding the causes of cholangiocarcinoma, improving diagnostic methods, and developing more effective treatments. According to AMMF, research efforts are focused on understanding how inflammatory liver disease can contribute to the development of the cancer, particularly in individuals with conditions like Primary Sclerosing Cholangitis (PSC), who are at higher risk. The charity showcased both previously funded and newly funded research projects throughout September 2025, emphasizing the impact of even small grants in initiating critical research.
Howard, speaking at an event alongside Kevin and Lisa Wemyss, also discussed the challenges facing cholangiocarcinoma patients in Scotland, as reported by STV. The charity is currently campaigning for a “Rethink Liver Cancer” initiative, aiming to improve outcomes for those affected by the disease.
