Sabah’s first risk-based follow-up tool: Why surviving colorectal cancer is only half the story

FOR people living on islands off the Kudat coast, in the deep interior of Tenom, or in villages across the Crocker Range, reaching care can mean boat rides, rough roads, or long walks before a clinic even comes into view. When a follow-up visit demands a full day of travel and money families simply do not have, the health system quietly loses the very people it was meant to protect.

When we speak about cancer, the story often ends when treatment ends. A tumor is removed. Chemotherapy is finished. The word remission enters the room like fragile relief. Families exhale and believe the storm has passed.

For many survivors, that moment is not an ending but the start of a quieter and more uncertain phase that receives far less attention from the public and sometimes from the health system itself.

For many survivors, each follow-up appointment is not just a medical visit. It carries anxiety, financial pressure, and the constant uncertainty of waiting for results. When visits are missed, it is often not neglect but exhaustion from repeated travel and cost.

Globally, colorectal cancer accounts for nearly two million new cases each year. In Malaysia, it remains one of the most common cancers affecting both men and women. Advances in surgery, chemotherapy, and diagnostics have improved outcomes, yet survival is shaped not only by treatment but by what happens after hospital doors close. Relapse within the first few years remains a major concern, and many relapses occur during this early period when close monitoring matters most.

In Sabah, the challenge is sharper. Local findings show that nearly 60% of colorectal cancer patients are diagnosed at advanced stages. Data from Sabah State Health Department reported that 5 year survival of around 23%, far lower than the national average in the modern era of cancer care. Survival rates are not only medical outcomes. They also reflect how well systems can support people after treatment, how easily patients can return for review, and how consistently follow-up care is delivered.

Survivors from rural areas must travel long distances to tertiary hospitals in Kota Kinabalu for follow up care. A single appointment can mean a full day of travel, lost income, and transport costs that strain already limited household budgets. These are the hidden costs of survival. When follow-up becomes irregular, it is rarely due to indifference. It is the weight of geography pressing on someone who has already endured surgery, chemotherapy, and the emotional toll of a cancer diagnosis. Distance itself becomes a silent determinant of survival.

Relapse is the part of the cancer story few speak about openly, yet for colorectal cancer, a meaningful proportion of patients will see the disease return within 5 years. A one size fits all follow up model, where every patient is reviewed at the same interval regardless of individual risk, does not reflect the realities of Sabah. In a resource limited setting, treating low risk and high risk patients in exactly the same way can mean unnecessary travel for some and insufficient attention for those at greatest danger.

This gap is what my PhD research at Universiti Malaysia Sabah (UMS) has tried to address. Together with a team of researchers, we developed the CARE CRC Risk Tool, a clinical risk assessment approach designed specifically for colorectal cancer survivors in Sabah.

Using information already collected during routine care, such as tumor stage and treatment factors, the tool helps estimate which survivors need closer monitoring and which can be followed up less intensively.

This is part of a broader shift toward risk adapted surveillance, where follow up intensity matches patient risk rather than a fixed schedule for all.

Risk-adapted follow-up does more than guide doctors. It helps health services allocate limited time and resources more wisely. Clinics can focus attention on those most likely to relapse while reducing unnecessary travel for low-risk survivors. In a state where distance shapes access, this approach aligns medical science with real-life geography.

This approach does not replace clinical judgement. It supports it. In a busy clinic, it acts as a guide so that high risk patients are less likely to be overlooked simply because the system is overwhelmed. It also allows care to be more efficient and more equitable.

Follow up should be seen as part of essential cancer care, not an optional extra after treatment ends.

As cancer survival improves, survivorship care must become part of planning, not an afterthought. Tools that support structured follow-up can reduce inequity, especially in rural states like Sabah where geography silently shapes outcomes.

On World Cancer Day, observed on 4 February and theme ‘United by Unique’, we often speak about fighting cancer. We speak less about the quiet courage of living beyond it. Survival is not a single victory. It is years of waiting rooms, routine scans, and the persistent fear of what the next result may show.

A clear and structured follow up plan can offer not only clinical protection but also psychological reassurance. Surviving cancer is only half the story. Ensuring that survivors are not lost across vast distances and uneven access to care is the other half. With the CARE CRC tool, Sabah is taking a step toward making the road after treatment as carefully mapped as the road to recovery.

Melvin Ebin Bondi is a PhD candidate in Public Health at Universiti Malaysia Sabah. He writes a weekly public health column for The Borneo Post.