Why these cancer patients face a lonely fight

Hundreds of people gather in Abuja, the capital of Nigeria, to mark World Cancer Day on February 7, marching to raise awareness about cancer and the importance of early diagnosis. The World Health Organization cites Nigeria as a country with a rapidly rising number of cancer cases. Emmanuel Osodi/Anadolu/via Getty Images hide caption

When Titilayo found a lump in her left breast, it felt like a death sentence.

"My world was crumbling," she says. "I had no hope, I had no life."

Titilayo — who asked NPR to only share her first name in order to speak openly about her cancer and its impact on her life — lives in a small city in southern Nigeria. To find out if the lump was malignant, she had to wait for weeks for a biopsy sample to be sent to Abuja, Nigeria's capital city.

When she got the news that the lump was cancerous, the doctor recommended that she undergo a mastectomy and multiple rounds of chemotherapy.

But the chemotherapy infusions she needed weren't always available where she lived, requiring her to find them in another state and bring them to the hospital.

"The burden of getting the chemotherapy drugs — the burden was on me," Titilayo recalls.

But her three daughters were young. They needed her. So she decided that whatever happened, she would pursue treatment.

"If I die of this thing, who would be able to care for my children?" Titilayo says. "I discovered that my life is worth fighting for."

One in five people alive today will face cancer in their lifetime. But while cancer treatments and survival rates are improving in wealthy countries, that's not the case in places where the rate of cancer diagnosis is rising the fastest.

The World Health Organization projects that by 2050, cases of cancer in sub-Saharan Africa will more than double; the highest rate of increase predicted in WHO's six designated regions. The Eastern Mediterranean region, which includes much of northern Africa and the Gulf, is a close second.

Cancer predictions

In Abuja, radiation oncologist Dr. Basira Hanafi Lawal sees this firsthand.

"We're wondering, are we creating more awareness for people and that's why they're coming in, or are the numbers just increasing?" she says.

Lawal points to several possible risk factors for a rise in cases: Nigeria's older population is growing. And more people are drinking alcohol, smoking tobacco and living urban, sedentary lifestyles, she says.

She's seeing a lot of patients coming in at early stages. She credits that to preventive screening and public awareness campaigns championed by nonprofits and religious groups.

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There's another trendline as well — patients who delay coming in until their symptoms are so severe they can't be ignored. "It's really heartbreaking," Lawal says. "Especially at the later stages – what do you do for them? And they ask you — what do I do?"

She estimates that 70% of her patients are diagnosed at stage 3 or 4 – when tumors have spread from the original site into surrounding tissues, lymph nodes or even other organs.

Then there are the cases that don't fit the patterns she'd expect. As in other parts of the world, colorectal cancer, associated with older individuals in the past, has become more common in youth. She recalls a 19-year-old diagnosed with this cancer.

Waiting room crowds

For all these patients, just finding a cancer doc can be daunting. Lawal is one of about 80 oncologists in a healthcare system that supports 242 million people. (For comparison, there are approximately 27,500 oncologists in the United States for a population of 340 million). It's not uncommon for doctors to receive their training in Nigeria but move abroad for jobs elsewhere. And although more than half of cancer patients globally need radiation, there are only 15 radiation centers in Nigeria.

So when Lawal gets to work, she says she often sees a crowd of patients waiting.

"Sometimes you have patients traveling, maybe eight hours," she says. "There are still a lot of areas and regions that are without radiotherapy centers, so the access is going to be quite limited."

The WHO report shows that cancer patients in Nigeria are also disproportionately likely to be required to pay for their care. In 2022, patients were responsible for more than 80% of cancer care costs in Nigeria, according to data from WHO's Global Health Expenditure Database.

Abigail Simon-Hart is all too familiar with these discouraging trends. She's a Nigerian breast cancer survivor and advocate, who is credited as a reviewer in the WHO report.

"A lot of times, people present late. Sometimes they've detected it earlier and they don't know where to go. Sometimes they know where to go but they don't have the money," she says.

Many health insurance plans in Nigeria do not include comprehensive cancer care, forcing many families to pay for their care out-of-pocket. Local crowdfunding websites are full of posts from cancer patients, trying to raise money for surgery and medications. That financial burden is felt not only in Nigeria, but across the low- and-middle income countries where the WHO expects to see the highest increases in cancer rates.

"I've seen people sell everything they have and still lose their loved ones," Simon-Hart says. "It's a very huge burden on the average family."

"We have to go through loans — bank loans, to take loans from our workplace or to solicit funds from friends and family," says Regina Fisayo Akinola, a breast cancer survivor and advocate in Ado Ekiti, Nigeria.

Akinola completed a round of treatment in 2014 and another in 2020, when she discovered another tumor in her right breast. She regularly encourages others to get regular mammograms to detect breast cancer as early as possible. She attributes her survival to this awareness and the support of her family.

But Akinola says that other patients aren't as fortunate, with friends and loved ones abandoning them.

"They will look and say oh, this person will soon pass away. There's no reason to waste their time or money on them. They cannot last," Akinola says.

For some, these challenges are enough to make the decision to stop treatment entirely.

"We are not dying because our cancer is worse. It's because our system fails us," says Ethel Olomu, a breast cancer survivor from Rivers State, in southern Nigeria.

All of these factors reduce the likelihood that an average cancer patient in Nigeria survives after their diagnosis. In data compiled by the WHO's Global Health Observatory from the years 2017-2021, just 28% of women diagnosed with breast cancer in Nigeria were still alive, five years later. The global median rate was 78%.

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Feeling alone

During treatment and even afterwards, many survivors recount social isolation and even rejection from their partners and the community.

"I lost my hair, and my eyebrows, my skin changed — and people would say, 'oh, you look like a witch,' " recalls Olomu, who was diagnosed with stage 4 breast cancer at the age of 31. "Because people didn't know that this is how cancer [treatment] works."

Olumu did not have a family history of cancer. After her diagnosis, her doctor taught her about the illness and what to expect during treatment. He even shared his personal contact information so she could ask questions about her symptoms at any time.

This inspired Olumu to create the Engraced Life Foundation, to support cancer survivors after treatment and to advocate for change. A support group for women in Rivers State includes more than 200 people, she said.

"And we share everything ," Olomu says. "It was founded out of a gap I lived through myself."

The Nigerian government has set a goal of reducing cases of cancer by 30% by 2030. In 2020, it established the Nigerian Cancer Health Fund to help low-income patients. And leaders are working with international organizations to improve access to cancer care — including purchasing additional radiation machines to install in local hospitals.

"The government is actually investing in the infrastructure that's highly costly," says Jennifer Dent, CEO of BIO Ventures for Global Health, a non-profit organization that works with companies and governments in low and middle income countries to improve access to cancer treatment.

For example — a vaccine against human papillomavirus, or HPV, can prevent cervical cancer, which is one of the most common cancers diagnosed in Nigeria, Kenya and other African countries. In 2019, Kenya added the HPV vaccine to its routine immunization program. In 2023, Nigeria followed suit.

"There's a lot of mistrust in vaccines in Nigeria, but there's some highly influential champions for cervical cancer in the country that I think are doing phenomenal work in driving public awareness," Dent says.

In another project in Cote d'Ivoire, BIO Ventures helped create a public awareness campaign with video advertisements on commuter buses, encouraging men to get regular screenings for prostate cancer. Steps like these, Dent says, can help countries prepare for a future where cancer diagnoses are increasingly common.