Living with effects of cancer misdiagnosis

Mr Andrew Odongo is frail. He speaks with some difficulty. And he is thin. So thin that you fear what a strong rush of wind would do to him.

The sub-county internal security officer (Giso) for Kalongo Town Council in Agago District told Sunday Monitor he is “always feeling weak” and “cannot eat like I used to eat before.”

Mr Odongo’s woes started in 2011 after he began experiencing excessive salivation and vomiting.

“It was on and off, but in 2016, the problem intensified,” he recalls, adding, “I came to Kampala, where I started getting medical assistance from Kitante Medical Centre. I was diagnosed with a venous obstruction and I underwent surgery.”

A stomach bypass was recommended. The surgery sounds straightforward, with changes being made to the stomach and small intestines. Yet after undergoing the operation, Mr Odongo’s “health did not improve.” So he sought a second opinion from Mulago National Referral Hospital.

“Doctors at Mulago asked for the records of the operation I had undergone. I did not have them,” Mr Odongo told Sunday Monitor, adding, “At the time I left Kitante Medical Centre, I was told the hospital did not give patients their medical records.”

Article 16 of the Patients Charter of 2009, however, upholds a patient’s right to medical information. The patient is entitled to obtain from the medical facility his or her medical information, including a copy of the medical records. 

Mr Odongo said the doctors from the Surgical Ward on Ward B at Mulago asked him if they could operate on him again—in the same place—to get a sample to inform their diagnosis. He agreed.

A sample they took later turned back positive for cancer. Mr Odongo was referred to Uganda Cancer Institute (UCI), where he undertook a battery of tests for the better part of 2017. Results, though, were unclear.

“I spent the entire 2018 without taking medication yet I was feeling general weakness of the body, my eyes were yellow and my urine and stool were very dark in colour,” Mr Odongo recalls.

Wrong diagnosis

In 2019, when the pain persisted, Mr Odongo returned to UCI for another round of tests. He says the test results revealed that he had a malignant tumour on his pancreas.

“I saw that the doctors who were handling my case (names withheld for legal reasons) were not happy with the results. They were not content. But they started me on chemotherapy,” he said, adding, “I did about four to five cycles of chemotherapy, but there was no improvement.”

From November 2020 to January 2021, Odongo underwent palliative chemotherapy for cancer he did not have. While chemotherapy is used to cure cancer, palliative chemotherapy is used when the cancer has spread and the goal is to prolong life for a few more months.

Every patient has a legal right to good quality medical care, and a health care provider is obliged to uphold this right. However, medical negligence, under which misdiagnosis falls, is quite common in Uganda.

Surprisingly, when he tried to stop the cancer treatment, Mr Odongo met serious challenges.

“Since there was no change in my condition, the doctor requested for more tests,” he revealed, adding that he was sent to Mengo Hospital, where results showed that “I did not have cancer.”

To his dismay, the doctor at UCI still kept Mr Odongo on chemotherapy. Mr Odongo protested, and asked for a referral letter from UCI. The doctor initially declined, an action that contravenes Article 13 of the Patients Charter of 2009. The provision gives every patient the right to be referred for a second opinion.

It was only after Mr Odongo escalated the issue to the UCI executive director that he was able to access a referral letter.

From 2022 to January 2023, Mr Odongo underwent tests at the Aga Khan University Hospital and treatment at the Nairobi West Hospital, both in Nairobi, Kenya. The Aga Khan University Hospital did more tests and found out that indeed he did not have cancer.

After a CT scan, he was diagnosed with obstruction of the bile duct. A bile duct stent, which is a thin hollow tube, was inserted into his blocked bile duct to drain the accumulated bile. The tube remained in place for two months.

Reduced quality of life

Two weeks ago, Mr Odongo returned to Nairobi and underwent a stent placement surgery. Although he is now well, his quality of life has deteriorated. 

“What was done to me at the cancer institute caused this weakness in my body. You know chemotherapy is not like other drugs. It is a very strong drug,” he said, adding, “Even in Nairobi, when the doctors were giving me some injections, the medicine could not pass through my veins. They told me that was the effect of the chemotherapy. Nowadays my legs feel so cold, like they are in a fridge.”

He adds that because of the stomach bypass surgery at Kitante Medical Centre, he remained with only a quarter of his stomach.

“After the operation, the doctor told me that I should eat very little food. He did not leave me with any medical record, so I thought that after some time I could eat normally,” he told Sunday Monitor, adding, “When I began eating the usual amounts of food I had been eating, I got problems. I almost lost my life. What he did was permanent. He reduced the size of my stomach.”

Mr Blicks Oyet, Mr Odongo’s brother, says the family has spent close to Shs500m trying to improve his sibling’s well-being. He also adds they suffered a lot of emotional strain, pointing out that at one point, a doctor at UCI told them to explore the option of getting palliative care.

Mr Oyet says the money for Odongo’s treatment was solicited from family, friends and clanmates. “We also sold part of our family land to raise money. Leaders in the district also appealed to their constituents on the local radios in Agago. The Internals Security Organisation also gave us some money.”

In a telephone interview with our sister station, NTV Uganda, Dr Jackson Orem, the UCI executive director, advised Mr Odongo to seek redress from the Uganda Medical and Dental Practitioners Council (UMDPC) if any acts of medical negligence were committed against him. The council has previously indicated that it, on average, receives 50 complaints against medical practitioners annually.

Mr Odongo is yet to make a complaint.

Patient’s rights

Every patient has a legal right to good quality medical care, and a health care provider is obliged to uphold this right. However, medical negligence, under which misdiagnosis falls, is quite common in Uganda.

Article 16 of the Patients Charter of 2009, however, upholds a patient’s right to medical information. The patient is entitled to obtain from the medical facility his or her medical information, including a copy of the medical records.