Emergency Physician Diagnosed with Stage 4 Cholangiocarcinoma

A routine visit to his family doctor led emergency physician Terrence May to a life-altering diagnosis of Stage 4 cholangiocarcinoma, a rare and aggressive form of cancer. May, an active individual who enjoys running, cycling, and hockey, began experiencing unusual fatigue and weight loss last spring. “I was having difficulty completing my runs and was getting fatigued very easily,” he explained. After consulting his doctor and undergoing imaging, May learned he had multiple lesions in his liver and lungs.

Cholangiocarcinoma, known as intrahepatic bile duct cancer, is diagnosed in over 600 Canadians each year, according to the Canadian Cancer Society. This disease is often detected at an advanced stage, leading to a dismal five-year survival rate of just nine per cent. May underwent various treatments, including chemotherapy and immunotherapy, but unfortunately, his cancer continued to progress. He has since shifted focus to palliative care, emphasizing quality time with friends and family.

Family Experiences Similar Struggles

The impact of cholangiocarcinoma is not confined to May alone. Andrea Katz faced a similar ordeal when her mother, Joanne Katz, was diagnosed with the same illness in 2013. Initially, Joanne experienced unexplained weight loss and abdominal pain, leading to a series of tests that failed to identify the problem. “They initially thought it was a severe stomach infection,” Andrea recalled.

Despite being prescribed antibiotics, Joanne’s condition worsened. Further testing ultimately confirmed cholangiocarcinoma, but by then, it was too late. “Initially my mom was given a year to live, and she was already at Stage 4 cancer,” Andrea said. Tragically, Joanne’s health deteriorated rapidly, and she passed away just 44 days after her diagnosis at the age of 67.

As a digestive health nutritionist now, Andrea emphasizes the importance of listening to one’s body and seeking medical attention when something feels amiss. Reflecting on her mother’s experience, she wonders if earlier detection could have changed the outcome. “When we found out that she was at Stage 4, they said she was probably dealing with that cancer for two years,” she noted.

Rising Incidence and Challenges in Treatment

Cholangiocarcinoma is the second most common cancer affecting the liver, with a significant number of patients diagnosed at Stage 4, where surgical options are typically no longer viable. Dr. Arndt Vogel, an oncologist at Princess Margaret Cancer Centre in Toronto, highlights the urgency of improving treatment access. “It’s a tumour with a very poor prognosis, and still the available treatment is not accessible here,” he stated.

While there are options for treatment, many remain unavailable in Canada, particularly some targeted therapies that have shown promise elsewhere. Dr. Vogel pointed out that there is a concerning trend of younger patients being diagnosed. “The incidents are rising,” he confirmed, stressing the need for greater awareness and education about this aggressive cancer.

May remains committed to advocacy despite the challenges he faces. In June, he organized a 5K run in his hometown of Lakefield, Ontario, raising over $130,000 for cholangiocarcinoma research. Although uncertain about his future, he is determined to promote education and awareness surrounding the disease. “When you hear that word cholangiocarcinoma, the most important thing is to advocate for yourself,” he advised.

The stories of May and the Katz family underline the critical need for increased vigilance in diagnosing and treating cholangiocarcinoma, as well as the importance of community support and advocacy in the face of such a formidable illness.