Emergency Physician Diagnosed with Stage 4 Cancer Advocates for Awareness

A routine visit to his family physician led emergency physician Terrence May to a devastating diagnosis: Stage 4 cholangiocarcinoma, a rare and aggressive form of cancer. May, an active individual in his 40s, had begun experiencing unusual fatigue and weight loss last spring. Concerned about his health, he sought medical attention, which resulted in imaging that revealed lesions in his liver and lungs.

Cholangiocarcinoma is considered rare, with the Canadian Cancer Society reporting over 600 cases diagnosed annually in Canada. Unfortunately, this cancer is often detected at an advanced stage, leading to a five-year survival rate of only nine percent. After his diagnosis, May underwent molecular testing through the Canadian Cholangiocarcinoma Collaborative and received chemotherapy and immunotherapy. Despite these efforts, he faced the heartbreaking reality of halting treatment due to the disease’s progression.

Understanding Cholangiocarcinoma’s Impact

The story of Andrea Katz, whose mother Joanne Katz was diagnosed with cholangiocarcinoma in 2013, mirrors May’s experience. Joanne initially presented with unexplained weight loss and abdominal pain. After multiple tests, her diagnosis revealed Stage 4 cholangiocarcinoma, with doctors giving her a prognosis of just one year to live. Tragically, she succumbed to the disease within 44 days of her diagnosis at the age of 67.

Reflecting on her mother’s journey, Andrea emphasizes the importance of heeding the body’s signals and seeking timely medical intervention. “When we found out that she was at Stage 4, they said she was probably dealing with that cancer for two years,” she noted. Now working as a digestive health nutritionist, she advocates for greater awareness of cholangiocarcinoma, encouraging individuals to trust their instincts regarding their health.

The Rising Incidence and Treatment Gap

Cholangiocarcinoma stands as the second most common cancer affecting the liver, with most cases diagnosed at Stage 4, rendering surgical options unavailable. Dr. Arndt Vogel, an oncologist at Princess Margaret Cancer Centre in Toronto, highlights the need for improved access to treatment options. “It’s a tumour with a very poor prognosis, and still the available treatment is not accessible here,” he stated.

Dr. Vogel also observed an increase in cases among younger patients, indicating a rising trend that requires urgent attention. “We have a lot of options, which is good, but with these targeted treatments I think we are still too slow, and we need to adapt faster,” he added. Enhanced awareness and education about cholangiocarcinoma are crucial, as the disease is rare but increasingly prevalent.

Despite the challenges posed by his condition, May remains committed to advocacy. In June, he organized a 5K run in his hometown of Lakefield, Ontario, raising over $130,000 for cholangiocarcinoma research. This initiative not only supports research efforts but also fosters community engagement and awareness regarding this aggressive cancer.

As May reflects on his journey, he expresses a determination to make the most of his time. “When you hear that word cholangiocarcinoma, the most important thing is to advocate for yourself,” he advises, underscoring the significance of self-advocacy in the face of serious health challenges. His story serves as a poignant reminder of the urgency for early detection and the importance of awareness in combating cholangiocarcinoma.