In June 2019, Marcus Chiang, a 40-year-old Singaporean entrepreneur, began suffering from severe abdominal pain while visiting his newlywed Malaysian wife’s family in Ipoh. Following an endoscopy and ultrasound at a local hospital, doctors identified a mass in his small intestine. Chiang returned to Singapore for further evaluation and was eventually diagnosed with a gastrointestinal stromal tumour (GIST) at the National Cancer Centre Singapore (NCCS). This rare form of sarcoma typically develops in the stomach or intestines due to genetic mutations affecting the KIT gene, leading to uncontrolled cell growth. Though potentially life-threatening, early detection significantly improves outcomes. Chiang, now 47, has since become an advocate for awareness around this uncommon disease. Chiang’s journey began in earnest in July 2019 when he underwent surgery to remove the tumour from his small intestine. According to Dr. Nagavalli Somasundaram, head of the lymphoma and sarcoma department at NCCS' medical oncology division, surgical removal is the primary treatment for GIST. Patients with a lower risk of recurrence are monitored post-surgery, while those with specific genetic mutations requiring imatinib, a targeted therapy, must take the drug for three years to prevent relapse. Chiang, whose condition required such treatment, described feeling lost and confused upon learning of his diagnosis. The rarity of GIST made it challenging for him to connect with others going through similar experiences. GIST accounts for approximately 1% of digestive tract cancers and affects roughly one in every 100,000 individuals globally. NCCS reports an average of 47 new GIST cases annually. Dr. Somasundaram noted that these tumours are more commonly found in older adults, making Chiang’s case unusual. She explained that the causes behind GIST occurring in younger individuals remain unclear. Symptoms often appear in later stages, including bloating, dizziness, fatigue, or blood in the stool. Early detection is crucial, yet many cases go unnoticed until they progress. Despite the challenges posed by his diagnosis, Chiang did not allow his circumstances to define him. During the height of the global pandemic, which saw Singapore’s land checkpoints closed and travel restrictions imposed, Chiang faced additional stressors, including the eventual dissolution of his marriage, finalized in 2022. However, he sought support from psychologists and medical social workers at NCCS, helping him navigate both his physical and emotional recovery. His commitment to personal growth continued unabated, culminating in the completion of a master’s degree in smart cities design from the Strate School of Design Singapore in January 2022. Before his illness, fitness was not a priority for Chiang. However, his encounter with cancer prompted a shift in perspective. He began prioritizing his health, incorporating regular exercise into his routine. This transformation underscored how adversity can lead to profound personal change. Chiang’s story highlights the resilience of individuals facing rare diseases and the importance of comprehensive care and support systems in managing such conditions. Dr. Somasundaram emphasized the significance of initiatives like the Specialised Programme for Advancing Rare Cancer Care, launched in July 2025, aimed at improving diagnosis and treatment for patients with rare cancers. These efforts align with broader research indicating that rare cancers collectively represent a quarter of all cancer diagnoses and contribute to 30% of cancer-related deaths worldwide. As understanding of these conditions grows, so too does the potential for better patient outcomes and quality of life improvements. Chiang continues to work towards raising awareness about GIST and advocating for greater resources and support for those affected by rare cancers. His journey reflects the complex interplay between personal resilience, medical advancements, and the ongoing need for community and institutional support in addressing rare and challenging health conditions.
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