Listen to the stories

As a child in the rural village of kwaNyuswa, KZN, I grew up listening to stories around the fire, told by my great-granny, uMachonco. In oncology I soon realised that listening is central to patient management. 

Every patient has a story to tell about her breast cancer and I have to listen to the story that brought her to me. At times the story is not told in the manner, language or order that we expect but, together with proper examination and medical investigations, good listening skills, patience and compassion, we end up with the full story – leading to appropriate treatment and care. 

This column is dedicated to telling the stories of patients, patients who have had a profound impact on my life, made me think outside the box and given me an appreciation of the many health challenges that often result in breast cancer patient’s late presentation at health facilities. 

December 2009, the nurse called the next patient. A strong, foul smell preceded a clicking of high heels. A beautiful young woman, impeccable in a long white dress with a fashionable coat entered. She was filled with sorrow and embarrassment because of the smell. In her hand, a bottle filled with what looked like maggots or worms. She began her story. 

She was a young 33 year-old, with four children and a wonderful husband who was a taxi owner. As she told her story, I realised that the foul smell was coming from her left breast where cancer had been diagnosed in 2007. She had been admitted for a mastectomy but, on the advice of family and friends, she opted to escape the hospital the day before her life saving operation.

She had heard that a left breast could not be operated on since it is close to the heart. If it were removed her heart would stop pumping and she would die. She ran away to save her life from the doctors who were going to kill her. It was this myth that led her to presenting, two years later, with a deep, foul smelling ulcer infested breast with worms. Now she was begging me to remove her breast. Examination showed that the ulcer was so deep that the ribs were exposed and she had chest, liver, brain and bone metastasis. She still insisted on an operation.

The Rural Reality

In South Africa millions of people have never heard of cancer and how deadly it is. Rural communities face a “survival of the fittest” health management approach. The majority of these patients are black, illiterate and poor. To complicate matters even further they have a complex belief system – based on culture, religion and myths – that are central to their understanding of medical conditions.

Traditional patients seek a cause for illness within the framework of indigenous beliefs. Cancer is interpreted as conflict, particularly in social relationships. Many patients believe that witchcraft caused their cancer, and their first priority is to reverse the sorcery. Seeking help from a traditional healer first, in their views, does not imply a delay in medical treatment.

The concept that a painless breast lump is potentially fatal is difficult for many rural women to accept. 80% of black women with breast cancer refrain from modern medical treatments (Vorbiof et al, 2001).

I founded an NGO, called Sinomusanothando Community Development, to address this poverty of knowledge and screening in my village and beyond. Education and self breast examination from an early age is critical and can be done for free at home.

Written by Dr Thandeka Mazibuko