Poor, black - and then came breast cancer

Published Jul 30, 2013

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Johannesburg - When she went for a check-up at Chris Hani Baragwanath Hospital for a lump in her breast, Lerato* was told the lump was malignant. The cancer was at stage three – it had extended beyond the immediate region of the tumour – so a surgical procedure to remove the breast was urgently booked.

Lerato was admitted to theatre for a mastectomy the next Monday, but the operation intended to save her life set off a roller-coaster of events that subjected her to terrible hardship.

Unhappy with her sudden absence from work, her employer withheld her salary for two months.

Estranged from her abusive husband, she was unable to pay rent for the little shack she and her children shared, so she found herself homeless and dependent on charity.

Finding money for the taxi fare to hospital for follow-up chemotherapy treatment imposed a huge extra burden on her.

Lerato’s plight came to the attention of Kwanele Asante-Shongwe, breast cancer survivor and the founder of the awareness campaign, BreastSens, who began a Twitter campaign that forced Lerato’s employer to resume paying her, and the spiral of tragedies set off by her diagnosis was slowly reversed.

But Lerato’s case starkly shows the circumstances that are common to many women in black communities facing a breast cancer diagnosis, and the sometimes impossible challenges they face, says Asante-Shongwe.

“These are women who are falling through the cracks of the pink ribbon campaigns, the women who are presenting with breast cancer only once it has become a sizeable lump in the breast or the tumour has turned septic. And these are the majority of women we need to reach,” she says.

The statistics support Asante-Shongwe’s assertion. About 70 percent of breast cancers presented at the Helen Joseph Hospital, for instance, are more than 5cm in size, or require chemotherapy before surgery to reduce the tumour, according to Dr Carol-Ann Benn, the specialist breast cancer surgeon who runs the Helen Joseph Hospital Breast Care Centre with Dr Sarah Rayne.

Many women find accessing hospitals and clinics for breast check-ups difficult and costly in terms of transport. But there are some dangerous myths out there that exacerbate lack of awareness about breast health.

“There’s a common misconception that if the lump is not sore, it cannot be cancer. There is also fear about losing breasts and fear around the chemotherapy treatment. These are obstacles in the way of early detection of breast cancer, which is critical to good treatment outcome,” says Benn.

Asante-Shongwe adds: “The reality is that breasts are seen as part of a woman’s sexuality and many men in our communities will tell their partners diagnosed with breast cancer, ‘you can’t cut your breast’.”

For this reason, a clause should be added to the Domestic Violence Act to stop men interfering with a woman’s right and access to medical treatment. Apart from losing a breast, there’s the prospect of losing your hair with chemotherapy treatment. Younger women in this situation will ask themselves: “Who is going to marry me?”

To these stresses add the underfunded and overwhelmed public health system, where the time gaps between testing, diagnosis and treatment can sometimes be months long.

Noelene Kotschan, founder of Pink Drive, describes the typical experience of someone with breast cancer in the public sector: a woman finds a lump, goes to her nearest state hospital where she gets her file and waits most of a day to be seen by a doctor in the outpatients department.

The woman is referred to the radiology department, where she is placed on a two-week waiting list. She is also sent for a mammogram, possibly at a different hospital, and she is placed on another waiting list. Six weeks elapse. Malignancy is confirmed and the woman is referred to a breast surgeon. The appointment for surgery is booked in two weeks’ time.

“If you add all this up, you’re looking at over three months between detection and surgery, sometimes longer. If the cancer is aggressive, its status by then could have developed from stage one and two to stage three and four, to where disease management is very difficult,” says Kotschan.

Benn and Asante-Shongwe agree that education, twinned with much better access to medical care, is the key to turning this scenario around. But while campaigners pressure the government to expand and improve facilities, women need to “own” their breast health, they say.

“Examining your breasts once a month is critical,” Benn said.

“Also, women need to know where and when to go to the clinic or hospital, because it is expensive catching taxis only to find you can’t be seen on that day. And they should know that a mammogram is a free service in public hospitals.”

Awareness, says Asante-Shongwe, includes women knowing how to take care of themselves in all aspects of their lives.

“Education is key to empowering women in making good choices, including protection from HIV and teenage pregnancy. Awareness of breast cancer should begin at school, but communities also need to be educated. There is a widespread ignorance around this disease and its treatments, and cultural expectations of a woman can be a problem.”

A mother-in-law, for instance, may balk when her daughter-in-law with hormone receptor positive cancer (the breast cancer cells have receptors for oestrogen or progesterone) is put on a five-year hormone treatment that suppresses her menstrual cycle and renders her temporarily infertile.

“Infertility, even if temporary, is hard for men and in-laws to accept,” says Asante-Shongwe.

“In my talks I have explained to a husband’s family that putting babies on hold is critical to saving his wife’s life, and explained the medical reasons for this. Men, too, need to be educated about breast cancer, which is why I refuse to talk to a woman-only audience.”

If breast cancer is diagnosed, ask questions, Asante-Shongwe suggests.

“There are at least five different types of breast cancer. Ask the doctor which one it is, and why he or she is choosing a particular treatment option.

“Women often don’t know the details of the cancer, and when asked why they’re having a mastectomy, they say, ‘Because the doctor said I must’. Remember, you have the right to question what is happening to your body.”

Although many women visit an inyanga (traditional healer) for treatment, and Asante-Shongwe understands this “as they are often more accessible than a clinic or hospital”, she warns against it for breast cancer patients.

“Our education campaigns need to explain the medical reasons for why muti and chemotherapy shouldn’t be used simultaneously, for instance,” she says.

The good news is that because of improved awareness campaigns, breast cancer is being detected earlier and earlier, says Benn.

“Being able to offer reconstruction (rebuilding the breast after the cancerous tissue has been removed) also encourages more women to come in for breast cancer treatment,” she says.

South Africa has a long journey ahead, however. Throughout the world about 80 percent of women with breast cancer are alive 10 years later, even with cancer relapses among some patients.

“My impression is that we are a long way from achieving these results in South Africa,” says Benn. - Pretoria News

* Not her real name.

 

RESOURCES

* Helen Joseph Breast Care Centre (Dr Carol-Ann Benn’s unit): mammograms are free for pensioners and the unemployed, otherwise the cost is R35-R100. A patient clinic is available every Wednesday morning for patients with or without medical aid. No appointment is required. Patients can arrive between 7am and 10am for consultations, screenings and investigations. Call 011 489 0100, e-mail [email protected] or visit www.breasthealth.co.za

* Milpark Breast Care Centre: Call 011 480 5779 or 0860 233 233 (Benn also works from here).

* Breast Health Foundation: www.mybreast.org.za or call 0860 283 343.

* BreastSens: www.breastsens.com

 

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