Indepth – Breaking the silence

There’s been great medical progress in diagnosing and treating breast cancer, but it’s still estimated to affect one in eight women – and young black women are at greater risk and have lower survival rates.

Durban-based anthropology lecturer Dr Nokwanda Nzuza, 28, was awarded her PhD this year for probing a topic close to her heart – the challenges faced by young black African women who have undergone breast-cancer treatment. “I watched my aunt struggle with what it means to have a disease that affects a part of the body that symbolises womanhood and fertility. I wondered how I’d deal with it, as a young woman negotiating relationships and hoping to have a family,” she says.

Beyond the physiological challenges of dealing with cancer – surgery, radiation, chemotherapy or other treatments – Nzuza discovered there were profound psychological challenges that are centred on sexuality and identity. “My experience with my aunt showed me that black women, especially, struggle to talk about them, although it’s crucial to address them.”

For her doctorate at the University of KwaZulu-Natal, Nzuza uncovered an informal network of 15 young black women aged 24 to 40, linked through their breast-cancer treatment at the same clinics. She spent time with them, learning their stories, their fears and their triumphs.

THE PRICE OF SILENCE

“The biggest challenge was just getting them to speak,” she says. “There’s a cultural sensitivity among many black Africans who’re ashamed of cancer. They believe it affects only certain people and it must be for a reason. For many, having HIV is now widely understood to mean you have had unprotected sex and you’ve been promiscuous. Women who participated in the study believed having breast cancer was a form of punishment from ancestors.”

Today, there’s probably more fear and uncertainty around cancer than around HIV, Nzuza says, because it hasn’t had the same public education campaigns. “Nearly everyone knows a virus causes HIV, and what you can do to prevent it: condomise. But they don’t know what causes cancer, how to prevent it or even how to manage it.”

Not only is this psychologically distressing for women who suspect they have it, but it costs them physically, as many hesitate to disclose even to those closest to them or to medical professionals, and seek treatment only when the disease has spread and become terminal.

“Some women told me they believed they’d been demonically possessed, and went to their pastor to heal the lumps they felt in their breasts. Others thought it was witchcraft and went to traditional healers, until the disease progressed to a point where they had no option but to get medical help.” Even some of those who went for medical treatment and had a breast removed continued to consult traditional healers – a few cutting short their chemo to avoid the side-effect of losing their hair, and risking the cancer persisting. “Traditional healers need to be educated about cancer, just as they now are about HIV and TB,” says Nzuza.

DISCLOSURE DILEMMA

Breast cancer comes down to deep-rooted issues of identity, sexuality and fertility, says Nzuza. “Women told me they understood why someone would turn against them when they had a breast removed. One said, ‘If you’re sitting around, and a person walks in with no breasts and no hair, your first thought is: It’s a man.’ To them, breasts and hair defined femininity and womanhood.”

Of particular concern to them was that treatments for cancer could trigger premature menopause and leave them infertile. “There are men in our African culture who want a woman to give them a child to establish their fertility before they’ll marry them,” Nzuza said. She tells of a woman who, before her cancer diagnosis, thought she was pregnant: “She attributed her breast tenderness to this, and she and her partner were so excited! When they went to her gynaecologist, they had already named the child Uzwile – ‘God has heard’ – as He had answered their prayers.” When the gynaecologist informed her instead that she had breast cancer, her relationship collapsed. “They were devastated. Ironically, the man died a few months later, while she’s now recovering from her mastectomy. But she feels so alone.”

A second woman in the study had also believed she was pregnant. “She already had a six-month-old child and wasn’t keen to have another just then,” says Nzuza. “When she was

told she had breast cancer, she thought it was punishment for not wanting to be pregnant. She was very hard on herself.”

Common to all the young women Nzuza spoke to was the enormous difficulty of disclosing their condition. “They told me that they felt uncomfortable exposing their breasts, especially to male doctors. But some also felt female nurses treated them disrespectfully or judgementally, possibly through their own misconceptions about the disease.” One woman in the study was herself a nurse, who nevertheless chose to consult a traditional healer for a time because she was so desperate to find an alternative to losing her breast and her hair. “But there was none, and she came to accept it.”

WAY FORWARD

Most of the women in the study have come to terms with their cancer and their mastectomies, but it’s been a hard road. Nzuza feels it could have been far easier if society and the medical profession ‘came on board’ to break the stigma. “Far more needs to be done to break the silence around breast cancer. People must be able to open up to their loved ones and medical practitioners, to be able to find out more about cancer, so they can make informed and timely decisions about treatments, and let go of the fear fed largely by ignorance.”

It’s important that partners, or anyone you live with, attend counselling too, so they can be properly informed and give you the support you need. They, like you, need to know that breast cancer doesn’t stop you from living fully. “Being a woman is not about physical attributes like breasts and hair, it’s about your psychological self,” Nzuza says emphatically. Today, there are also prosthetics and wigs available, and corrective reconstructive surgery. As for fertility, it’s now possible to freeze your eggs ahead of radiation or