Jane Frances loved her nyama choma and sweet pastries, her favourite being Black Forest cake. In July 2014, life for the 52 year old communications specialist almost came to a standstill when she was diagnosed with a particularly rare and aggressive form of breast cancer – the Triple Negative Breast Cancer, commonly referred to as TNBC. It has been four years since Jane enjoyed her favourite cake, she has since forsaken these and other similar foods after the diagnosis.
TNBC affects 10-20 per cent of those who receive a breast cancer diagnosis. A study by the International Agency for Research on Cancer released in September 2018 indicated that, a total of 5,985 breast cancer cases were recorded this year in Kenya, and 2,088, 849 globally. This means that roughly 1,197 people were diagnosed with TNBC this year. Given Kenya’s current population of about 50 million people, the number of people suffering from this type of cancer amounts to 0.0023 per cent.
Less than one per cent of all breast cancer cases occur in men. According to the acting head of department at Kenyatta National Hospital’s Cancer Treatment Centre, Dr Catherine Nyongesa, only one out of six men tested positive for TNBC. Out of 1,197 TNBC patients countrywide, about 200 of them were men.
While there are no specific TNBC symptoms, it is important to seek doctor’s advice when these signs manifest – new lump in the breast or underarm (armpit), thickening or swelling of part of the breast, irritation or dimpling of breast skin, redness or flaky skin in the nipple area or the breast, pulling in of the nipple or pain in the nipple area, nipple discharge other than breast milk, including blood, any change in the size or the shape of the breast and pain in any area of the breast.
The first test after physical evaluation may include an X-ray of the breast known as mammogram. This could be followed by breast cancer biopsy (this is where a tissue is removed from the breast to discover the presence, cause, or extent of a disease) and other imaging tests. Usually, once your doctor suspects you have breast cancer, you are tested for estrogen, progesterone and the human epidermal growth factor (HER2) receptors. These receptors are the proteins that are found inside and on the surface of cells. TNBC does not contain any of these receptors. Since the TNBC tumor cells lack the necessary receptors, common treatments like hormone therapy and drugs that target estrogen, progesterone, and HER2 are ineffective.
According to Centre for Disease Control (CDC), breast cancer patients who have cancerous lumps can either have it removed (a lumpectomy) or have the entire breast removed (a mastectomy) before proceeding with treatment. This is then followed by chemotherapy, which in most cases responds better than in other types of breast cancer.
CDC best compares breast cancer cells as a house. “The front door may have three kinds of locks (receptors); estrogen, progesterone and HER2.” If your cancer has any of these three locks, doctors have a few keys (like hormone therapy or other drugs) they can use to help destroy the cancer cells. But if you have triple negative breast cancer, it means those three locks are not there. So doctors have fewer keys for treatment.”
A research on Ethnicity and Breast Cancer Characteristics in Kenya that was published in September 2017 found that socio-demographic factors such as level of education and differences in traditional beliefs and cultural practices affected the tumor size and stage at diagnosis. The report further says that lack of or fewer years of education may limit a woman’s awareness of breast cancer and her knowledge of breast cancer symptoms and the importance of evaluating breast lumps, which leads to delays in presentation and diagnosis.
Under President Uhuru Kenyatta’s Big Four Agenda which includes Universal Health Coverage, the government has allocated Sh.7 billion in the 2018/19 financial year for the leasing of Computed Tomography (CT) Scan equipment which are expected to help diagnose cancer disease in the early stages and reduce cancer deaths. An additional Sh400 million was allocated for the establishment of a Cancer Institute. In the 2017/18 budget, Sh0.7 billion had been earmarked for cancer services.
In 2015, Kenya adapted the Managed Equipment Services (MES) model where the National Government was to equip 2 hospitals in each of the 47 Counties and 4 National Referral hospitals with outsourced specialized state-of-the-art medical equipment. Under this programme, 37 CT scanners were budgeted for at Sh4.5 billion.
The Ministry of Health issued a fresh tender for the procurement of the same at Sh 7 billion. Each scanner was bought at an inflated cost of Sh 227 million, a machine that normally goes for Sh40-45 million.
These details emerged when the ministry’s Principal Secretary, Peter Tum, was summoned by The National Assembly Public Accounts Committee in June 2018.
The programme to provide CT scan machines to the counties has run into stormy waters. Recent revelations by the Auditor General indicate that these machines have been lying unused even as county governments continued to pay the hefty lease amounts that the government had committed them to pay for the services. In the meantime, cancer patients continue to suffer as they have no options but to seek help in the private hospitals.
In Kenya, specialised cancer treatment is inaccessible to people living in rural areas. There are only two public hospitals that are equipped with oncologists, pathologists and laboratory equipment to treat cancer, namely – Kenyatta National Hospital (KNH) and Moi Teaching and Referral Hospital in Eldoret. Currently, the cost of TNBC treatment at KNH, for instance, ranges from Sh150,000 to Sh600,000 which varies with the stage of the disease and treatment offered. The fee is inclusive of surgery, chemotherapy and radiotherapy. Private facilities – all based in Nairobi – like the Aga Khan University Hospital, MP Shah Hospital, The Nairobi Hospital, Texas Cancer Centre and HCG CCK Cancer Centre also offer TNBC treatment but at a higher cost.
Dr Nyongesa, a clinical oncologist, said, “TNBC treatment can be made available and affordable for patients countrywide by availing diagnostic and treatment facilities at the counties and train more oncologists and pathologists in Kenya.” The government should embrace affordable universal healthcare for all and develop comprehensive cancer centers in the counties,” she added.
According to a research by Breastcancer.org, the five-year survival rate for TNBC is around 77 per cent versus 93 per cent for other breast cancer types. This means that there is a higher risk of death when the cancer recurs. A person’s survival rate depends on many factors. This includes the stage and grade of the cancer as well as your response to treatment. As with all cancers, it is imperative to remember that each person’s outlook is unique. Statistics apply to a group, not to an individual.
In August 2016, Jane Frances’s doctors in India recommended the removal of her left breast to prevent a hidden tumor from spreading. In April 2018, three tumors were discovered on her right breast. Jane is currently preparing to travel back to India for a PET/MRI, an advanced imaging test to determine whether the tumors are cancerous.
Since TNBC has no targeted drug therapy, Jane Frances drastically changed her diet to minimise risk of recurrence, and also to boost immunity. She now swears by organic foods and juices made of mint, turmeric, stinging nettle and moringa.
Ms Frances is lucky in that her condition was diagnosed early and she is undergoing treatment. For others like her, until very recently, they had no option for PET CT scans in East and Central Africa. There is now a PET-CT Scanner that was officially launched on 26 October 2018 by the First Lady, Margaret Kenyatta, at the Aga Khan University Hospital. The National Hospital Insurance Fund (NHIF) has committed to cover the full cost of PET-CT services. However, the fee for the PET CT procedure is Sh 69,500, well above what is affordable by most Kenyans.
Very little breast cancer awareness has been done in the country, with a majority of the campaigns happening only in the capital city. The government needs to offer free breast examinations in public hospitals as a way of minimizing the breast cancer mortality rate. There is need to integrate cancer education into the school curriculum especially in institutions of higher learning and community setups like barazas to sensitive people about the benefits of early cancer screening and treatment.
Breast Cancer is one of the most common forms of cancer worldwide, and a leading cause of death worldwide. Breast Cancer Awareness month which is marked every October serves as a reminder that even in 2018, most Kenyans have no access to oncology facilities and early detection which makes cancer treatment unaffordable.
More data on cancer prevalence and types needs to be made available to the general public to ensure that healthcare planners have the information to make policy changes about treatment and can prioritize cancer management. It is important that more effort is put into educating Kenyans about all forms of cancer and ensuring that screening is affordable and accessible to Kenyans from all walks of life.
Tragically, majority of patients seek medical help at a late stage with advanced cancer when curative treatment is no longer an option. As Kenyans, both male and female, we must recognize that with all forms of Cancer and especially Triple Negative Cancer, early detection and treatment improves one’s chances of survival. We must make sure that the managers of public health facilities ensure that treatment and testing is available and affordable.
Frances has had five breast surgeries, and the possibility of a sixth one traumatizes her. “The government should mainstream cancer education and advocacy in order to alleviate some of the risk factors such as pollution and lifestyle choices,” she said.
Article done with the support of WanaData and Code for Africa’s Data Team