Childhood cancers are often misdiagnosed in Kenya, forcing the affected children and their families to undergo great physical, mental and financial stress. Childhood cancers remain little-understood, and are often missed in the early stages.
Although there are no official statistics, indicative data show that one in 15 people with the cancer is a child. And estimates show that about 2,500 to 3,000 children get cancer every year. However, doctors say that the figures could be higher as some are never diagnosed at all.
Prof Walter Mwanda, who is in charge of paediatric oncology at the Kenyatta National Hospital (KNH), says the problem with diagnosing childhood cancers are, first, that few people know the symptoms to look out for. This is aggravated by delayed consultation and referrals.
“Telling that a child has cancer just by looking at them might not be possible in the rural areas. For example, the symptoms of scabies, which is common in rural areas, can be mistaken for many things. And swollen glands in children can mean many things too, including tuberculosis,” he says.
Some doctors and lab technicians cannot tell cancer despite a number of tell-tale symptoms after lab tests, so by the time the correct diagnosis is made, the disease has spread to other organs, reducing the chances of survival, and requiring aggressive treatment.
Most diagnostic errors go unreported as the affected suffer quietly. But even in cases where a family might wish to seek legal redress, it has neither the financial means nor the energy for a court battle, given that all resources will be directed towards treating the child. Indeed, the High Court Registry indicates that misdiagnosis cases reported over the years are only in the hundreds.
SECOND, THIRD OPINION
Misdiagnoses occur for various reasons. First is failure by the clinician to single out cancer from the many symptoms which could signal the presence of other diseases. Then there are also patients’ reluctance to reveal information, poorly equipped laboratories, or radiologists or pathologists missing the evidence.
Dr Alice Musibi, an assistant professor of medical oncology at the Aga Khan University Hospital in Nairobi, says medics sometimes fail their patients. For instance, a patient with persistent abdominal pain might initially self-medicate but eventually seek treatment if his or her condition does not improve. The doctor will start by treating them for malaria, then typhoid, then worms, when they could be having stomach cancer. By the time the patient goes to see another doctor, the cancer will have spread, she notes.
Similarly, those with swollen lymph nodes and fever are likely to be given anti-tuberculosis drugs when they could be having lymphoma.
Consequently, Dr Musibi advise, patients should seek a second, or even third opinion, if need be.
“A hospital might be affordable and close to you but if your condition is not improving, go and see another doctor,” she suggests.
The low doctor:patient ratio has also contributed to misdiagnoses. And even as the government looks to build more cancer centres, there is still a shortage of paediatric cancer doctors, nurses and clinicians.
Besides, there are no training facilities for paediatric oncologists and nurses in East Africa, so some learn on the job by working with experienced paediatricians.
Prof William Macharia, the head of paediatric oncology at the Aga Khan University Hospital, in Nairobi, says that Kenya should not equip hospitals with cancer equipment until it has adequately trained a sufficient number of clinicians, including in paediatricians, to administer the cancer treatment.
“Chemotherapy drugs can be very toxic to children and in the ‘wrong hands’, Kenya stands to kill more children due to complications of treatment than cancer itself,” he says.
Prof Macharia, who is also a specialist in blood diseases, says it is better to leave sick children alone rather than expose them to chemotherapy or radiotherapy at the hands of quacks.
Widespread lack of awareness among parents also means they cannot identify the possible signs of the early stages of cancer in a child. As a restult, most of them seek medical attention for their children to the hospital when the disease has progressed.
Further, says Dr Macharia, many people don’t expect children to get cancer, which they associate with older people who live sedentary lives, and eat Western-type foods.
“Most people are not aware that children get cancer; they talk of cancer of the breast, and cervix, but childhood cancers are different,” he says.
The risk factors of childhood cancers are not well-known. However, some children with cancer were “exposed to radiation or have certain inborn genetic conditions”. In addition, Burkitt’s Lymphoma, which is relatively common in Kenya, has also been closely associated with exposure to malaria and Epstein-Barr virus.
But despite the known risk, there is no proof that eliminating malaria would also automatically eradicate Burkitt’s Lymphoma.
“The best bet lies in early diagnosis and starting treatment immediately,” Prof Macharia says.
Meanwhile, Dr Musibi says that while Kenyans might know a lot about Burkitt’s Lymphoma, preventing deaths from the disease is hampered by the high cost of drugs and shortage of specialists to diagnose it early.
And Prof Mwanda says most childhood cancers are curable if detected early and treated by qualified specialists in well-equipped medical facilities.
About 80 per cent of children with cancer survive five years or more after diagnosis, according to the World Health Organisation (WHO).
However, in Kenya, the chances of survival are still low due to late diagnosis, and, therefore, delayed treatment.
The most common types of childhood cancers in Kenya are leukaemia, lymphoma, Hodgkin’s disease, Kaposi’s sarcoma, kidney cancer and rhabdomyosarcoma.
Besides the wrong diagnoses, children with cancer also suffer as a result of a strained health care system, and in some cases have to share the few facilities with adults, placing a heavy burden on KNH. At any one time, there are more 70 children with cancer in the wards. Nevertheless, KNH has made great strides in treating children with cancer.
“We have been lucky because there are many organisations that support the children. There is no backlog at the children’s chemotherapy unit; we have a sophisticated and well-managed unit,” Prof Mwanda says.
However, the children have to share radiotherapy facilities with adults, although they are given first priority.
Private hospitals like Getrude’s and Aga Khan also treat children, although the cost of treatment is prohibitive, sometimes requiring up to Sh2 million.
The rising cases of wrong diagnoses are already public shaking confidence in some hospitals, especially rural clinics.
For cancer diagnosis, Kenya needs well-trained personnel, says Dr Musibi.
“When a sample is taken to the lab, the technician must know what he is looking for so that he does not miss the cancer diagnosis,” she says.
Prof Mwanda says for cancer management to be successful, all cancer centres should have access to affordable surgical units, good laboratories, radiotherapy machines, chemotherapy units, well-stocked pharmacies, well-stocked blood banks and oncologists.
Prof Macharia says hospitals also need quality antibiotics and other drugs for children who get extremely sick from the effects of chemotherapy and radiotherapy. Children undergoing chemotherapy might develop kidney and bladder diseases, diarrhoea, anaemia, mouth and throat sores and are at risk for infection.
Those undergoing radiotherapy develop skin problems, lose appetite and suffer from fatigue.
Without well-equipped cancer centres, doctors fear, some clinicians might dilute cancer treatment for children to reduce the side-effects of chemotherapy and radiotherapy, a practice that goes against global standards.
“Due to financial limitations, Kenya should properly equip one or two hospitals with many machines and train cancer nurses to take care of the sick children,” Prof Macharia says, adding that we are likely to save more lives that way than by opening many centres managed by ill-trained people.
“We will kill them like flies,” he says.
CATCHING CANCER EARLY
The importance of early diagnosis
NOTHING COULD HAVE prepared Alice Njeri for what she has been through. When her son, Stanford Njoroge, then going five, started scratching his face when they were living in an IDP camp in Naivasha Stadium, she did not think much of it. But when his skin became dry and scaly, the former small-scale businesswoman, who had been evicted from Narok during the 2007/2008 post-election violence, took him to a government clinic.
“I was told he had a skin infection and given some ointment for it,” she recalls.
But the itching continued for a year, and after a while, Njoroge’s eyes became so sensitive to light, that when he played outside, they would tear excessively. And since the ointment only made his skin itch more, Ms Njeri stopped using it and took him back to the clinic.
“He was given painkillers, and the doctor advised me to move out of the IDP camp, saying the tent we were living in was responsible for my son’s condition,” says Ms Njeri.
After some months, sores covered Njoroge’s face.
“I went back to the doctor, but he said it was nothing serious and gave me a different ointment,” Ms Njeri says.
Two years later, Njoroge’s sight began failing. His mother took him back to the hospital, where he was once again given skin ointment.
“One day, I asked an American missionary who used to visit us at the IDP camp to help me take my son to another hospital. All I had was the government medical card so I could take him only to a public hospital. By that time Njoroge’s nose had been eaten by the disease.
She took Njoroge to an eye clinic, where he underwent two surgeries. After a few months, he was diagnosed with eye cancer and his right eye removed.
Ms Njeri thought that the worst was over for Njoroge’s but before long, he lost sight in his left eye.
BAD TO WORSE
“The missionary took him to Thika School for the Blind, where he remained for three years. He is a very bright boy. Even after missing school for many months undergoing treatment, he would still be number one at the end of the term. He might be frail now but just bring a Braille machine and you will be surprised at just how well he can read,” she says with pride and a smile.
“When he is well, he even takes care of his younger brother. When I am doing menial jobs, I wake up early, cook and leave food for Njoroge and his three-year-old brother, Njuguna. Njoroge serves the food, covers the cooking pot and ensures that Njuguna eats. He is a very responsible boy,” she says.
Despite the eye surgeries, Njoroge’s condition deteriorated, with deep smelly wounds appearing on his face and neck, facing him to drop out of school.
When he was taken to a different hospital in 2011, Njoroge was diagnosed with xeroderma pigmentosum (XP), a rare genetic disorder which, over the years, had progressed to skin cancer. A person with XP develops severe sunburn and eye irritation within minutes of exposure to sunlight. Managing the disease is focused on educating the patient and parents about protection from the and genetic counselling.
Njoroge has undergone three surgeries, including plastic surgery to reconstruct his nose.
“The doctors removed skin from his legs to patch up his nose. He had stitches all over his face. I could not even wash it, and he was fed intravenously. I believed he was going to be okay,” says Ms Njeri.
But six years later, Njoroge is still suffering. The wounds are getting worse by day. The missionary could no longer pay for Njoroge’s treatment and two weeks ago, when she took him to the hospital after another deep, painful wound appeared on his mouth. The doctor’s advice?
“Take your son to a hospice.”
Today Njoroge, 10, weighs just 13 kg. The cancer has eaten up part of his mouth and nose, and a big, deep wound on his neck makes it hard for him to chew, so he only eats mashed food. He wears an oversized hat to cover his face.
Meanwhile, Kennedy Kipkorir, whose son was diagnosed with acute lymphoblastic leukaemia (ALL) when he was five years old, knows the benefits of early detection.
“My son showed signs of anaemia and when I took him to a family paediatrician, he was referred to another doctor immediately, and that’s when he was diagnosed with ALL,’’ he says. “He started treatment immediately.” But there were hitches when his son required blood transfusion. “Whenever I called friends or family members, some offered to send me money instead of donating the blood. I had to appeal for blood via radio,” he says.
His son, 13, is now well, thanks to early diagnosis and specialised treatment in Madrid, Spain, funded by well-wishers.
How misdiagnosis occurs
• Failure by the clinician to single out cancer from a number of symptoms
• Patients’ reluctance to reveal information,
• Poorly equipped laboratories
• Radiologists or pathologists missing the evidence.
Burkitt’s lymphoma: A cancer of the lymphatic system. It is recognised as the fastest growing tumour and is associated with impaired immunity. It kills fast if left untreated.
Epstein-Barr virus: It is a common virus in the herpes family. It can lie dormant for years and causes crippling, long-lasting fatigue.
Rhabdomyosarcoma: A cancer that develops from connective tissues, such as the muscles, fat and bones. It commonly occurs in the head and neck, urinary and productive organs, arms and legs.