Living with breast cancer in Uganda

Every year in Uganda, 15 000 cancer cases are registered. The most common cancer among women in the country is cervical cancer, followed by breast cancer. 

In January 2016, 36-year-old Suzan Akello from Oyam District in northern Uganda became one of those women diagnosed with breast cancer. 

Her fight against the disease started when she experienced pain in her left breast. Her local health center was not equipped to conduct a biopsy and therefore referred her to a hospital four hours away that charged 25 000 shillings (about USD 7) for a checkup. Akello could not afford this, so she went to another health center that could not perform the diagnostic tests either. She finally underwent a biopsy at Gulu Hospital in northern Uganda.

“When I was told I had breast cancer, I thought of my children, especially my 3-year-old daughter. I cried and asked the doctor to remove both breasts and not just the sick one, so I could be free from cancer. But the doctor insisted on treating the sick breast only,” recalls Akello.

Every month, Akello traveled to Gulu Hospital, where she stayed for two weeks at a time to receive treatment. She brought her 9-year-old son to help carry her daughter, which meant he had to miss school. The treatment alone cost 80 000 shillings (USD 22), and she spent another 12 000 shillings (USD 3) every day on food for herself and her children.

In May 2017, Akello was referred to Uganda Cancer Institute (UCI) in the city of Kampala for chemotherapy. There, she did not have a bed to sleep on. “I would collect box papers and spread them on the hospital veranda and sleep there at night because there was no room in the ward,” she says.

She was later referred to the Kiota Kona hostel, run by a nongovernmental organization called Patient Relief Mission, which looks after women with cancer. The hostel provides 20 women with food, accommodation and transportation to UCI. Despite her numerous visits to UCI for chemotherapy, Akello’s cancer was aggressive and she unfortunately lost her left breast in November 2017.

UCI registered about 4 000 new cancer patients in Uganda in 2016. Four in every 100 women in Uganda are diagnosed with cancer every year, according to the Kampala Cancer Registry.

“When my community learnt of my diagnosis, people told my husband to abandon me because I was going to die. They told him one can never heal from cancer, but he said he would support me up until the end, and this reignited my hope to live,” Akello says.

Akello is a farmer, but she stopped tilling the land – her family’s source of food and income – when cancer weakened her body. She had to borrow money from a teacher to cover her transportation and hospital costs, while her husband struggled to put food on the table. After just a few months, she had borrowed 8 million shillings (about USD 2 500), and the teacher demanded to be reimbursed. Akello had to give up her house and move her family into smaller house units.

The Kiota Kona hostel, run by Patient Relief Mission, provides food, accommodation and transportation for 20 women suffering from cancer. “Here I can sleep under a roof with my fellow cancer victims. We have proper beds and enough food, and we are transported to the hospital to get treatment,” says Akello.

On a typical day at the Kiota Kona hostel, Akello rests, takes walks, weaves mats and sometimes weeds the garden. The garden produces vegetables and therapeutic foods such as turmeric, garlic and lemongrass, which help patients with their nausea – a side effect of cancer treatment.

Akello remembers when people would not even call her or pick up her phone calls because they thought they would learn of her imminent death. But today they answer her calls because her two-year fight against breast cancer has given them hope that she will continue to live.