When Hilman Basri noticed a lump on his foot in late 2015, cancer was the last thing on his mind. The 29-year-old watched the swelling grow large enough that he had to buy shoes a size bigger. It seemed minor, annoying at most.

A biopsy at the National University Cancer Institute, Singapore (NCIS) revealed the truth: clear cell sarcoma, a rare and aggressive cancer lurking beneath what appeared to be nothing more than a harmless bump.

Basri's experience captures the central challenge of sarcoma care — these cancers are masters of disguise. They can arise almost anywhere in the body, often presenting as painless lumps that resemble benign conditions. By the time patients and doctors recognize the danger, the disease has frequently progressed to late stages, complicating treatment and worsening outcomes.

Now Singapore's healthcare system is mounting a coordinated response to improve early detection and treatment of these rare cancers, which account for less than one percent of adult cancers but represent approximately 21 percent of pediatric cancers, according to research published in Clinical Sarcoma Research.

A Disease of Dangerous Complexity

Sarcomas present a formidable clinical puzzle. With more than 100 subtypes, each requiring different diagnostic and treatment pathways, effective care depends on specialized expertise that many clinicians encounter rarely, if ever, in their careers.

"The rarity of sarcoma means that many doctors may see only a handful of cases in their careers, leading to uncertainty in recognizing the condition and deciding when to escalate or refer," said Adjunct Professor Mark Edward Puhaindran, Chairman of the Medical Board at National University Hospital and Senior Consultant in the Division of Surgical Oncology at NCIS.

Terence Goh learned firsthand how complex sarcoma treatment can become. Diagnosed with retroperitoneal pleomorphic sarcoma in 2023 at age 46, Goh underwent neoadjuvant radiotherapy followed by an exceptionally demanding surgery involving multiple organs and surgical teams.

The tumor's location deep within the retroperitoneum, combined with tissue scarring and inflammation from radiation, created a prolonged and technically challenging operation. Subsequent complications required additional procedures, including removal of a non-functioning kidney compressed by the tumor.

Goh's treatment journey has required repeated multidisciplinary review, escalation of therapy, complex chemotherapy protocols, targeted therapy coordinated with nephrology specialists to protect his remaining kidney, and multiple surgeries involving both chest and abdomen.

"I'm still fighting," Goh said. "What keeps me going is trusting the doctors and doing my best to live as normally as possible, for my family and for myself."

Building a Knowledge Network

To address the challenges of diagnosing and treating such a diverse group of cancers, clinicians from across Singapore's healthcare system have developed new expert guidance. The effort, led by NCIS in partnership with the National Cancer Centre Singapore and international contributors, resulted in a clinical handbook titled Clinical Management of Bone and Soft Tissue Tumours.

The handbook brings together expertise from 70 local and international contributors across multiple specialties — surgery, medical oncology, radiation oncology, pathology, imaging, and allied health. It aims to help healthcare professionals navigate complex diagnostic pathways, identify when specialist referral is required, and determine appropriate treatment approaches.

"Sarcoma pathology is inherently complex," said Associate Professor Victor Lee Kwan Min, Head and Senior Consultant in the Department of Pathology at National University Hospital and one of the handbook's lead editors. "These tumours are rare, highly diverse and often difficult to characterise, which means accurate diagnosis depends on specialist expertise supported by appropriate ancillary tests."

Imaging plays a particularly crucial role in early detection. Associate Professor James Hallinan, Senior Consultant in Diagnostic Imaging at NUH and another lead editor, noted that "timely and appropriate imaging can significantly influence treatment planning and outcomes."

The handbook outlines core principles for when further investigation or specialist referral is warranted — guidance designed to catch sarcomas before they progress beyond the point where treatment becomes exponentially more difficult.

Fighting Cancer With Purpose

For Basri, surgery in January 2016 included complex reconstruction and a skin graft taken from his arm. Although he continues to live with persistent disease and has required further surgeries and ongoing medical treatment over the years, his journey has been defined not by limitation but by determination.

Under the care of Puhaindran and Advanced Practice Nurse Foong Li Li, Basri's management extended beyond surgery to include long-term follow-up, rehabilitation, and continued treatment. Encouraged by his care team to choose resilience over resignation, he reframed his outlook on life.

He adopted a healthier lifestyle and turned to running as a way to cope with the demands of living with cancer. Since 2018, he has run the Run For Hope Marathon annually, often training and competing between surgeries and medical treatments.

Each race represents not recovery from cancer, but a powerful affirmation of what remains possible despite it.

"This is not a death sentence," Basri said. "It is not the end, but the beginning of a new chapter."

A Coordinated Ecosystem

Singapore's approach to sarcoma care reflects a broader shift toward integrated, multidisciplinary cancer treatment. The new clinical guidance emerges from an ecosystem that brings together orthopedic oncology, pathology, radiology, surgery, medical oncology, and allied health expertise within a coordinated network spanning multiple institutions.

For Goh, who credits his wife and family for sustaining him through repeated hospitalizations and prolonged recovery, the multidisciplinary approach has been essential. A father of two young children, he remains deeply supportive of sarcoma research and has expressed willingness for his case to contribute to advancing medical knowledge.

"I hope more people understand sarcoma better," he said. "More research, more awareness and more treatment options can make a real difference."

The strengthened clinical guidance represents an acknowledgment that rare cancers require rare expertise — and that building pathways to connect patients with that expertise early can mean the difference between a manageable disease and one that becomes overwhelming.

For adolescents and young adults disproportionately affected by sarcomas, and for patients like Basri and Goh navigating complex treatment journeys, clearer referral pathways and enhanced coordination offer something increasingly tangible: hope grounded not in optimism alone, but in the accumulation of hard-won clinical knowledge.