Rare cancers strike hard cash-strapped patients, hospitals

From her contagious laughter, nothing reveals that Elizabeth Osiche, a spinal cord cancer patient is in pain.

She easily hides the pain of suffering from a rare type of cancer, having a disorder of the pituitary gland, battling with a cyst in the head that causes unbearable headaches and other multiple growths in her respiratory tract.

Despite the fact that she struggles to walk because of the excruciating pain in her whole body caused by the tumour located in her spinal cord, for now her biggest headache is the lack of Sh4 million required for treatment in India.

“I have gone through so much pain, but for now money is my biggest headache,’’ she says.

The 48-year-old mother of one is battling a disease that many in Africa see as a death sentence, but for Ms Osiche — having gone through five surgeries successfully — this is just another crisis in her life that she hopes will soon fade away.

Cancer is emerging to be a public health problem in Africa. According to the International Agency for Research on Cancer, about 715,000 new cancer cases and 542,000 deaths occurred in Africa in 2008.

These numbers are projected to nearly double to 1.28 million new cancer cases and 970,000 cancer deaths by 2030 as more adopt behaviours such as cigarette smoking, unhealthy diets and sedentary lifestyles.

In Kenya, there are no official records on cancer, but estimates show there are about 20,000 to 22,000 new cases every year, a number that is already proving to be a burden to the government as patients grapple with high cost of treatment, wrong diagnosis and long waiting time.

The burden for Kenya and other African countries is expected to worsen further with the emergence of the not so common cancers that require research, specialised treatment, machinery and large investments that few hospitals can afford.

Doctors cannot confidently point at the reason behind the rising numbers of patients with rare cancers, but they know that it is a trend that should worry many.

Set up three years ago, Cancer Care Kenya offers radiotherapy and chemotherapy services and has been receiving patients with cancers that were not very common in the region.

Dr Vijay Narayanan, an oncologist at the facility says head and neck cancers are nowadays common in Africa compared to previous years.

‘‘Oesophagus cancer is becoming common, especially in Moyale and Garissa regions,’’ he said. The cancer of the food pipe is linked to exposure to corrosives, poor diet and smoking.

He said nasal cancer is also on the rise, adding that more men are also getting breast cancers compared to previous years.

“In the last two years, the hospital has treated three male breast cancer patients,’’ Dr Narayanan says.

Children have not been spared as rare cancers strike hard. ‘‘Last year, we treated an 11-month-old who had kidney cancer. We removed the kidney, did 27 sessions of radiotherapy and the baby is doing fine,’’ said the oncologist.

The most common cancers in children are leukaemia, brain tumours and lymphomas.

Kenya Cancer Association vice chairman David Makumi said the number of patients with mouth and tongue cancers is also increasing because of tobacco and miraa chewing and cigarette smoking.

According to Dr Narayanan, 70 per cent of cancer cases are related to tobacco. Bladder cancers are also common nowadays with about 1.1 per cent of the patients being diagnosed with this kind that was rare a few years ago.

Mr Makumi says this type is now common in areas in Kenya where bilharzia is prevalent like Mwea and Lake Victoria region. Pancreas cancers also represent three per cent of all cancers reported in Kenya with rates increasing with these characterised by late diagnosis and poor outcomes.

Thyroid cancer, ranked among uncommon diseases in the world has seen an increase in number of patients in Kenya with the waiting time for treatment in hospitals like Kenyatta National Hospital in Nairobi running into months.

Liver cancer rate is going up because of the increase in alcohol use and hepatitis B infections which is blood-borne and can be transmitted sexually, Mr Makumi said.

‘‘Lung cancer is a big crisis in the western region and now we are seeing increasing numbers. It is competing for number one slot in Kenya,’’ he says.

Of concern to many oncologists are the low survival rates among these uncommon cancers because of a lack of tissue banks and interest in developing therapies due to low investment return and mainly incorrect diagnoses.

This was the case with Ms Osiche who says her troubles started in 2007 when she could wake up in the morning with excruciating pain in her legs. One doctor said that the pain was being caused by bones not fitting well.

An X-ray of the heel and feet showed the bone structure was right, but the doctor thought he had a solution. ‘‘He recommended an injection under the heel costing Sh5,000 one on each leg twice a month,’’ she says.

‘‘I refused because I didn’t have the money and was even more scared of the pain as the injection had to go through the heel to the leg ligament.’’

The pain got worse with years and she had to survive on painkillers and after “millions of hospital admissions’’ one doctor last year recommended a magnetic resonance imaging (MRI) of the spinal cord which showed she had a tumour between the vertebras, a head MRI showed she had empty sella syndrome, a disorder of the pituitary gland and a respiratory system scan showed her air passage was full of small tumours.

To add to these, her stomach muscle was found to be loose.

‘‘Fluids used to flow to the chest cavity,’’ she says. ‘‘My problem now shifted from the Sh1.5 million required to remove the tumour in the spinal cord to more money required to also cut these growths in the air passage surgically, tighten my stomach muscles among others,’’ she says.

Due to the complexity of the surgeries, the doctors recommended she goes to India for treatment where some of the tumours will be removed through laparoscopy so that they don’t have to remove two vertebrae bones, open the spinal cord membranes to access the tumour and then remove it, a process that might tamper with her nervous system.

The high cost of treatment is a challenge to many cancer patients.

Dr Narayanan says there is a need to strengthen public and private partnerships to enable poor patients even get treatment in private hospitals at subsidised rates. Patients should also be allowed to access radiotherapy and chemotherapy services using the National Health Insurance Fund, he says.

As the world marks Cancer Day today, for Ms Osiche what she hopes for is to get money for treatment in India in time.

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Additional reporting by Wangui Maina.