Cancer patient's ordeal reveals cracks in healthcare system

Arm of patient with drip. [Courtesy/GettyImages]

Being diagnosed with cancer is rarely a straightforward journey. It begins with quiet, creeping symptoms, easily mistaken for stress, ulcers or fatigue. Then comes a cycle of hospital visits, referrals and months of uncertainty.

Patients see specialists, undergo countless scans, procedures and blood tests. Misdiagnoses are common. By the time a correct diagnosis is made, precious time has often slipped away.

For many, the real struggle begins not with the diagnosis but with navigating the system. Treatment often means juggling chemotherapy, surgery, radiotherapy and expensive drugs. There are side effects; nausea, fatigue, pain, hair loss and the emotional toll is just as heavy.

Anxiety, depression and fear walk hand in hand with medication. For some, it’s a battle fought over months. For others, it stretches into years

When Damaris Wanjira Odhiambo was diagnosed with colon cancer, she never imagined her fight for survival would involve multiple hospitals, international travel and an endless wait for a life-saving scan.

“All I want is clarity. To know if the chemo worked. But in Kenya, even answers have a waiting list,” says Damaris, now 50, seated at her sister’s home in Thika, where she’s recovering from the latest round of treatment.

Her experience is not just one of resilience, but also a window into Kenya’s fractured cancer care system. A system where world-class equipment sits idle, radioactive medicine is too rare and delays come at a high cost.

Damaris first noticed trouble in 2022. Diagnosed with ulcers and H pylori, she followed treatment without much improvement. By mid-2023, her blood levels had dropped dangerously low. Multiple transfusions and tests later, doctors finally diagnosed her with stage 3 colon cancer in November 2023.

“I was confused. I didn’t know what to do,” Damaris recalls. “I’d already been through months of tests, transfusions and being told it was ulcers. Then suddenly, it’s cancer stage three. It felt like everything collapsed around me.”

She was referred to Kenyatta University Teaching, Referral and Research Hospital (KUTRRH), where she underwent surgery in January 2024. Chemotherapy followed in March. But something didn’t feel right. Her tumour marker, a test called CEA (Carcinoembryonic Antigen) was climbing.

The CEA (Carcinoembryonic Antigen) test is a blood test used to help monitor certain types of cancer, particularly colorectal cancer. CEA is a protein that may be found in higher levels in people with some cancers.

While it’s not used to diagnose cancer on its own, doctors often use it to track how well treatment is working or to check for signs of recurrence. A rising CEA level during or after treatment may suggest that cancer is still present or has returned.

“I told the doctors, but they insisted I continue with chemo,” she says. ”They didn’t do further tests. I had to seek another opinion.”

That second opinion came from a doctor at Nairobi Hospital who recommended a PET (Positron Emission Tomography) scan. The scan, conducted at Aga Khan Hospital in August 2024, showed the cancer had spread to her lymph nodes. A treatment known as CyberKnife was advised, but her insurer, MP Shah, couldn’t cover it locally. India became her only option.

CyberKnife is a non-invasive treatment that uses targeted radiation to destroy cancer cells with high precision. Unlike traditional surgery, it doesn’t involve any cuts or incisions. Instead, it delivers focused radiation beams to the tumour, often in fewer sessions and with minimal damage to surrounding healthy tissue. It’s especially useful for treating hard-to-reach or inoperable tumours.

To understand Damaris’s experience, one must understand FDG (Fluorodeoxyglucose). It’s a radioactive form of glucose used in PET scans, a special imaging test used in cancer care that shows how cancer is behaving in the body. After a small amount of radioactive sugar such as FDG is injected, the scan highlights areas where cancer cells are more active. It helps doctors detect spread, monitor treatment response and check for recurrence.

In Kenya, this critical imaging test, which relies on FDG to detect active cancer cells, remains out of reach for many patients due to limited supply and high costs.

According to Dr Kassim Arslan, a radiology consultant, “FDG helps us detect cancer early, monitor its spread, and evaluate how well treatments are working. It’s especially useful in determining whether a mass is active cancer or just scar tissue.”

Cancer cells absorb more glucose than normal cells. FDG, being a radioactive sugar, highlights these cells during a PET scan. But the radioactive isotope, Fluorine-18, has a half-life of only 110 minutes. This means it becomes ineffective very quickly.

Producing FDG requires a machine called a cyclotron, highly expensive and technically demanding. Storage and transport are tightly regulated. As a result, FDG must be produced near where it will be used, and any breakdown in this supply chain can bring PET scan services to a halt.

Radak Sammy, a Business Development Executive at Ultra Diagnostic Centre (UDC), explains the operational hurdles. “Even though we offer PET scans, we rely on KU’s cyclotron for FDG. If KU has a supply issue, we’re all stuck.”

Kenya has six PET-enabled centres: KUTRRH, UDC, Aga Khan, Nairobi West Hospital, Ruai Family Hospital, and HealthCare Global Enterprise Limited. But with only one publicly known cyclotron (at KUTRRH), the entire system is vulnerable.

“FDG production involves radiation, so regulations are intense, licensing, transport and needs specialised staff. It’s high-cost, high-stakes,” Radak adds.

PET scans cost between Sh60,000 to Sh90,000, making them unaffordable for many. Importing FDG is nearly impossible due to its short half-life and transport risks. In October 2024, Damaris travelled to Fortis Hospital in India. There, she received clarity Kenya couldn’t provide, her cancer was now stage 4. CyberKnife was no longer viable, and she was put on a new chemotherapy plan.

“One chemo session cost Sh488,000. I did six sessions. My insurance got depleted. I had to pay Sh700,000 from my pocket for other expenses,” she says.

After returning to Kenya in January 2025, her troubles didn’t end. A severe pneumonia attack, persistent leg pain and more chemotherapy followed. Most distressing, though, was the inability to get a follow-up PET scan.

“I was told KU had run out of the medicine. UDC also had none. I had to book at Aga Khan for 5th June 2025. It’s too long to wait,” she says.

Roselyne Okumu, oncology nurse specialist and President of the Oncology Nursing Society (ONS) Kenya, underscores the urgency during the 3rd East Africa Oncology Summit, “Cancer is not waiting. The future of cancer care is not 10 years from now. The future is today.”

Roselyne says the cancer burden in Kenya is massive, with over 42,000 new cases reported each year, yet access to timely diagnosis and treatment remains uneven. She highlights the need for multidisciplinary care, innovation and local research.

“If Kenya gets cancer research and diagnostics right, East Africa will follow. We already have strong centres, we just need to make them functional.”

Kenya’s Ministry of Health, through the Social Health Authority (SHA), provides coverage for PET scans, but this support comes with strict conditions. Coverage is only provided if the scan is conducted at an SHA-accredited facility, ensuring quality and compliance with standards.

Moreover, the PET scan must be medically justified, requiring clear evidence that the procedure is necessary for diagnosis or treatment. Importantly, patients must also secure prior approval from the SHA before the scan can be covered, adding an additional layer of oversight to regulate access and manage resources effectively. Many patients fall through the cracks, especially if their insurance is depleted, or if the system is congested. And delays, in cancer care, can mean the difference between curable and terminal.

“80 per cent of cancer patients in Kenya likely never get a PET scan,” says Radak. “And without that, treatment is often a guessing game.”

Kenya is currently the only country in East Africa with PET scan facilities, but compared to countries like India and South Africa, access remains limited. In those countries, PET scans are more widely available, often performed on the same day, whereas in Kenya, patients frequently face long waiting times due to the scarcity of scanners.

Damaris noticed this immediately, “In India, there was no wasting time. Appointments were honoured. Pain was treated immediately. Here, everything is linked to your cancer even if it’s something else.” She now attends physiotherapy for her leg, a condition that may not even be cancer-related. But because of delays in getting a PET scan, no one knows for sure.

Damaris’s story reflects the reality for thousands of Kenyans. Cancers like lymphoma, lung, colorectal, breast and cervical can benefit immensely from PET imaging especially during treatment.

Without it, patients often undergo blind chemotherapy or unnecessary treatment extensions. Roselyne calls for more nurse involvement in research and innovation, “Nurses are at the heart of trials, awareness and patient navigation. But we need investment, mentorship and access to diagnostics to truly rewrite the future of cancer care.”

The weakness of a system becomes evident in the face of individual resilience. Kenya has invested in PET scan infrastructure, but without consistent FDG supply, sufficient funding and staff support, those machines remain underutilised. “The answers exist. The machines exist. The people exist. What we need is coordination and urgency,” says Dr Arslan.

Until then, Damaris and thousands like her will continue to fight their cancer not just in the body, but in the system. “I’ve done the chemo. I’ve survived the side effects. I just want to know, did it work? And I want that answer here, at home, not across an ocean.”