Eleanor Ceres found out she had lung cancer after the tumor spread from her chest and began protruding out her neck.
Born and raised in Cape Town, South Africa, Ceres has been smoking for over 30 years — and smoking causes nearly three-quarters of lung cancer deaths around the world.
Why wasn't she diagnosed earlier? Prior to the tumor's manifestation, her only symptom had been a sore arm, which the doctors chalked up to arthritis. By the time she was diagnosed in April 2024, the cancer had advanced to Stage 4 and was terminal. Doctors could only offer palliative care, easing her pain.
"I've got a child around 12 years old. I want to see her grow up and get married and have her own children," says Ceres, a single mother. "I cry a lot because I'm gonna die and everybody's gonna stay alive."
The story of Ceres holds clues to a puzzling issue involving lung cancer.
It's the deadliest cancer in the world, killing 1.8 million people each year — more than any other cancer. But the official statistics suggest that isn't the case in sub-Saharan Africa. In fact, based on mortality rates, it seems that lung cancer is only a problem in South Africa — the richest country in the region — and, in particular, the Western Cape — the province with the most efficient and well-resourced health care system.
But experts say these statistics hide the real story: how lung cancer is being grossly undercounted across sub-Saharan Africa. While smoking is slightly higher in South Africa compared to its neighbors, that's only half the story, according to Dr. Coenie Koegelenberg, a pulmonologist at Tygerberg Hospital in Cape Town. "We have the most accurate stats because we actually diagnose lung cancer," he says.
Africa's hidden lung cancer epidemic, as Koegelenberg calls it, is part of a larger crisis in global health, as infectious diseases like tuberculosis and HIV have increasingly come under control and non-communicable diseases (NCDs) become an existential threat.
Africa's cancer burden, for example, is expected to more than double by 2050, from 370,000 new cases a year to 940,000 cases. However, only 1% of global health funding is allocated to preventing and treating NCDs in low- and middle-income countries, despite accounting for two-third of annual deaths.
Lung cancer offers a case study for how these countries can succeed or fail in addressing NCDs, given that this disease can usually be prevented through smoking cessation or even cured with regular screening and early treatment.
Instead, systemic undercounting and resource constraints have allowed the disease to grow unchecked across sub-Saharan Africa. "If you don't report things and put your head in the sand, that doesn't mean it's not there," Koegelenberg says.
Why lung cancer goes undiagnosed
There are almost no nerve endings in the lungs, so in the early stages, the most common symptom of lung cancer is no symptom at all, says Dr. Keertan Dheda, a pulmonologist at Groote Schuur Hospital.
And when symptoms do appear, they are often quite generic — chest pain, coughing up blood, and difficulty breathing. So, doctors in sub-Saharan Africa often misdiagnose lung cancer patients as having tuberculosis, given the high burden in the region, Dheda continues.
"Patients would go through the whole treatment regimen for tuberculosis and not really be investigated for lung cancer," says Lorraine Govender, a nurse and the national manager of health promotion at The Cancer Association of South Africa. Those lost six to nine months of possible treatment can be deadly, since 55% of people with lung cancer die within a year, according to Cancer Research UK "The lack of training for health care providers to identify lung cancer is a big problem," she adds.
Tuberculosis may play an even more direct role, given that patients with this disease are twice as likely to get lung cancer than those without — likely due to this bacterial disease causing lung inflammation and DNA damage. HIV is also implicated in lung cancer since this virus weakens patients' immune systems, leaving them less able to fend off respiratory diseases or kill budding cancer cells, according to Koegelenberg. His own research shows that, among lung cancer patients, those with HIV tend to be younger and have more advanced cancer than those without HIV. "Lung cancer is but one spoke in the wheel of colliding epidemics," Koegelenberg says.
Given these challenges, many lung cancer patients die misdiagnosed, and their real cause of death is rarely known, given poor infrastructure to certify deaths and their causes. "In Africa, where we don't have the screening and diagnosis available, we may see deaths from cancer but not know what cancer the patient actually died from," Govender says, "or maybe have deaths and not know it was cancer."
Autopsies could help answer these questions but are rarely performed for religious and cultural reasons, says Dr. Kelechi Okonta, a cardiothoracic surgeon at the University of Port Harcourt Teaching Hospital in Nigeria. The World Health Organization thus assessed that two-thirds of countries in Africa don't have reliable data on births, deaths, and cause of deaths.
Okonta thinks sub-Saharan Africa is in a catch-22 on lung cancer, where systemic undercounting leads to limited data and limited data allows governments to ignore this disease and the need for better record-keeping. "There is no intentional activity by any government at any level. There is no lung cancer registry, there is no lung cancer group, there is no lung research grant, there is no lung cancer unit, even in the hospitals," says Okonta. "They think it's not a problem."
The other side of the problem is timely diagnosis. While the Western Cape and South Africa lead the region in spotting lung cancer, for most patients, it comes too late. Data from the largest hospital in the Western Cape showed that, in 2019, 94% of patients with lung cancer had advanced, incurable disease at the time of diagnosis. There's always an ethical dilemma around asking someone with advanced lung cancer to stop smoking, says Dr. Ayanda Trevor Mnguni, head of the department of internal medicine at Khayelitsha District Hospital in South Africa and a pulmonologist. "Once you are actually so far gone, there's really no point."
Skyrocketing smoking rates across sub-Saharan Africa means the lung cancer problem is likely to get worse, as tobacco companies target the region to replace falling sales in the West. Especially at risk are communities like Khayelitsha, a racially segregated township on the outskirts of Cape Town, as tobacco companies often flood poor areas with cheap cigarettes and aggressive marketing. It's a sprawling maze of makeshift homes — of cardboard, wood and corrugated metal — over twice as dense as Manhattan, with an estimated 2.4 million residents.
At Khayelitsha District Hospital, patients in blue gowns regularly step outside to have a smoke. Mbulelo Shicani, a lung cancer patient here, says that he buys a pack of cigarettes for 10 rand, or 50 cents, and that these prices have actually been coming down. Local shop owners also never turn away customers since they're too young, Shicani continues.
"We obviously diagnose lung cancer a lot better compared to the rest of the country and the rest of the continent," Mnguni says, given that the Western Cape has the strongest health care system in South Africa and perhaps all of sub-Saharan Africa. "But that doesn't mean much if smoking rates continue to rise," he says, and the disease is almost always so advanced that the only option is palliative care.
Why screening isn't an easy solution
One way to find tumors and treat them early is with lung cancer screening, especially given that pharmaceutical companies, such as AstraZeneca and Chinese firm BGI Genomics, see Africa as a key region for innovation and investment. So, in 2019, Koegelenberg and Dheda created the first lung cancer screening guidelines in sub-Saharan Africa, and Discovery, the largest private health-insurance provider in South Africa, started covering screening several months ago, Koegelenberg says.
That, however, would only serve South Africa's private health care system, which caters to a small, wealthier minority with far greater resources. Dheda openly acknowledges that lung cancer screening isn't practical for the 84% of South Africans in the public system, or even most other countries in sub-Saharan Africa, "although we should be screening and we know we should be screening," he says.
Even if there were enough CT scanners to screen high-risk individuals, there wouldn't be capacity to biopsy nodules and treat all these cases, given budget shortfalls and rapidly growing waitlists. "It's unethical to do the scan if there's an abnormality, and you actually can't do anything about it," says Dr. Sameera Dalvie, an oncologist at Groote Schuur Hospital.
The only option, as Mnguni sees it, is public health awareness with comprehensive anti-smoking campaigns and regulations. He points out that Shicani and most people in Khayelitsha don't know that smoking can lead to lung cancer, so governments shouldn't take awareness for granted. "Once people end up with cancer, unfortunately, you're not going to do well," Mnguni says. "For most limited resource countries, the best bet is to prevent people from getting the disease."
This too is easier said than done, given pressure from tobacco companies and the need for greater social support to help people manage addiction. "Many people view smoking as a coping mechanism," says Salomé Meyer, one of the leaders of South Africa's Cancer Alliance. "What are you going to offer in the place of smoking when communities are living in stress?"
Change may be on the way
Despite these challenges, Meyer is hopeful about the future. South African lawmakers are considering a new smoking law that would ban all tobacco and e-cigarette advertising, as well as raise penalties to 15 years of jail time for businesses that sell tobacco to children or at cut-rate low prices. Furthermore, recent research from Vietnam suggests that lung cancer screening might be feasible with chest x-rays and artificial intelligence, which is a more realistic, scalable option for sub-Saharan Africa, Koegelenberg says.
Ultimately, change hinges on better data collection, from comprehensive cancer registries to a universal death registration system, Okonta says. And that might have to be proactively driven by the healthcare system instead of the government — in order to break the catch-22. "With adequate record keeping and follow-up of patients, we can solve this," Okonta adds. "Maybe the government will start paying attention to lung cancer."
"We must stop hiding behind, 'Oh, it's not going to be affordable,'" Meyer says, since the cost of inaction is far too high. "We must just do it."
Simar Bajaj is an American journalist who has previously written about lung cancer for The New York Times, National Geographic, STAT, NBC News, and Scientific American. He is the recipient of the Foreign Press Association award for Science Story of the Year, the National Academies award for Excellence in Science Communications, and the AAAS Kavli Science Journalism Award.
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