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NELISA Sipamia was diagnosed with breast cancer in October 2007. Since her ordeal she has become a voice for women who have suffered from breast cancer, bringing education and awareness into rural areas and helping people make informed choices about their health.

Her journey inspired her to help change the stigma of cancer by talking about it in a language which people could understand.

Sipamia’s journey started after she felt a strange pain in her breast. There was no lump, just pain. The doctor sent her for a mammogram and she embarked on a journey which started in a haze of denial and misunderstanding and changed the course of her life forever.

They said that there was something in there and I needed to see a surgeon and have an operation, she says . It was such a shock to me when they told me it was cancer. You ask yourself is this right? Is it me? When I saw the surgeon I told him it was a cyst, not cancer, but the surgery was scheduled, the diagnosis made. I remember asking him to please, let me keep my breasts, and he explained that it would depend on how far the cancer had spread. I woke up, and my breast was gone.”

For Sipamia, it was an experience which could have been made far less terrifying if she’d felt more informed and understood more about what her options were.

I was given all sorts of advice by people saying I shouldn’t have done this or done that or that I should have seen a sangoma,” says Sipamia. I think what I did need was education. People need far more clarity about the possibilities before they go into theatre and about their diagnosis. In rural communities, people are not being informed and even charities are not getting their message to the people. That’s because advice is not being given in the right language.”

Rural communities face inordinate difficulties when it comes to education. Learning English is hardly a priority, especially when it isn’t spoken at home. As a result, many people don’t understand the impact of cancer or know how to detect it because awareness campaigns are primarily in English.

Nobody told me about reconstruction for my breast. I wasn’t given the choice,” says Sipamia. I am not saying it’s something I would do, but I should have been told about it so I could make an informed decision.”

For Sipamia, it isn’t about forcing people to stop seeing a sangoma, but to rather encourage them to see a doctor first. She believes that by educating people about cancer in their own language and in a way that respects their culture, it is more likely to encourage them to see a professional.

There remains a stigma around cancer in African society, but through education and open dialogue this can be overcome.