Breast Cancer: One Disease, Three Stories

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Gertrude Nakigudde. (Photo: Joanne Silberner)

Gertrude Nakigudde is an accountant in Kampala, Uganda. I’m a freelance reporter and journalism instructor in Seattle. Angelina Jolie is, well, Angelina Jolie.

We’ve all had mastectomies, and we’ve all nursed parents through their final days with breast cancer. (In Gertrude’s case it was her father – men get breast cancer, too.)

Angelina’s announcement – that she underwent a double mastectomy to prevent breast cancer – got me thinking about how differently the breast cancer experience can play out.

I met Gertrude, the accountant in Uganda, while working on a series about cancer in developing countries for The World. What really gets Gertrude’s eyes blazing is talking about her public relations and advocacy work for the Uganda Women’s Cancer Support Organization (UWOCASO), a 40-woman-strong group of breast cancer survivors in a country where breast cancer is deeply stigmatized.

“When you talk about cancer, it is translated into death,” she told me. “Here they believe it is an untreatable disease.” Women with breast cancer don’t want their neighbors to know – no one would marry their children. Women don’t go for medical care when they notice lumps. “They don’t know the danger in that lump,” Gertrude said. She herself waited a year. Her family said to ignore the lump. She went only when it became painful. And, at first, she didn’t know where to go, and no one else she knew had any idea. After a costly series of misdiagnoses and failed treatments, she finally got a mastectomy and chemotherapy.

My story in many ways is completely different. I live in Seattle, home of some of the world’s best cancer care. I’m fully insured. My husband and family have been enormously supportive. And there’s certainly no stigma against breast cancer in the US. (There are days when I think if I see one more pink ribbon, I’ll scream.)

But Gertrude and I share some things, as well. We both were scared when we got our initial diagnoses. Like Angelina Jolie, we’ve experienced the searing pain of watching a parent die of breast cancer. We were both really angry about our diagnoses. And now we are both very grateful about being survivors – though, at 10 years out, Gertrude is much more confident about it than I am, at 2.5 years.

Gertrude heard about Angelina’s surgery online. A prophylactic mastectomy would be a near-impossible decision for Ugandan women, Gertrude wrote me this week, not just for monetary reasons but because of stigma and lack of medical literacy. “Women here refuse mastectomy for a sick breast,” she said. “I cannot imagine they will do it before the disease.”

What she hopes will make a difference is Angelina’s observation that most breast cancer deaths occur in low- and middle-income countries, and her call for all women, “whatever their means and background, wherever they live,” to have access to prevention and treatment methods. Gertrude said Angelina’s story will increase awareness about breast cancer.

But Gertrude is not so sure how it will help her own cancer survivors’ group. The bottom line is money. UWOCASO is struggling to educate Ugandans about breast cancer. Their website is down at the moment. They haven’t been able to raise the $200 needed to renew it.

Joanne Silberner is an artist-in-residence at the University of Washington, and a multimedia journalist. She’s been covering medicine, global health and health policy issues for 30 years, including 18 years at NPR. You can listen to an audio story about Joanne and Gertrude below or at PRX.

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