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.

True Love - - Contents - By GLY­NIS HORNING

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

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