Kirsten West Savali and her sister, Tammie West Jones
Courtesy of Kirsten West Savali

Breast cancer is a special and urgent concern for black women.

We are 10 percent less likely to develop breast cancer than white women but 40 percent more likely to die from it, particularly when diagnosed in the earlier stages. We are also more likely to develop it earlier (before age 45) and more likely to have a triple-negative diagnosis—the most aggressive form of breast cancer with the lowest survival rate.

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So why should we wait, as the American Cancer Society suggests, to start screening?

Last week the ACS released updated guidelines that include discussion with a health care provider at age 40 about when to begin screening, yearly mammograms for women with an average risk of breast cancer starting at age 45 and mammograms every other year starting at age 55. Breast exams from a medical provider and self-exams are no longer recommended.

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Dr. Tim H. Emory, director of breast imaging at the University of Minnesota Breast Center, opined in an op-ed at the Star Tribune that the new recommendations from the ACS "further confuse an already confusing and differing array of early breast cancer detection recommendations."

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"The older ACS guidelines, still endorsed by the American College of Radiology and the Society of Breast Imaging, were simpler: yearly mammographic screening beginning at age 40," he continued.

Dwelling on the outskirts of this narrative are black women. Black women who, by societal design, have less access to quality and comprehensive health care, particularly in low-income and rural areas.

Black women are also more likely to have dense breast tissue, which makes mammograms difficult to read. According to Health Day:

Denser breasts make it harder to detect breast cancer via mammogram, and they're thought to boost the risk for the disease. For this study, researchers said they used a better technique to measure breast density than that traditionally used by radiologists.

Even with this knowledge, screening tools such as molecular breast imaging, or MBI—a technique that uses a radioactive tracer that "lights up" any areas of cancer inside the breast, increasing detection and survival rates for women with dense breasts—are not offered in some areas.

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The confusion surrounding when and what type of screening is best for black women, and access to that screening, is cause for alarm.

If not for finding the lump herself during self-examination, my sister might have died. If she had followed the new ACS recommendations, she might be dead today.

"Anytime scientists can't or don't agree, it gives some men and women an excuse not to do something that could very well save their lives," Linda Goler Blount, president and CEO of the Black Women's Health Imperative, a Washington, D.C.-based health-advocacy organization, told The Root. "As a very good friend said, 'If the scientists can't agree on when I should have a mammogram, then why should I have a mammogram?' "

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My sister was diagnosed with breast cancer in 2007; she was 36 years old. If not for finding the lump herself during self-examination, she might have died. If she had followed the new ACS recommendations, she might be dead today.

I'm now 35 years old, and according to my doctor, I should have had my first mammogram when I was 27. I had no idea. One could say that I should have known—after all, I am responsible for my own health—but none of the literature that I read explained to me that when a close relative has been diagnosed, the at-risk family member should get a mammogram 10 years prior to the age that relative was when diagnosed.

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Further, because I had been nursing my children over the past decade, I was told that mammograms would be unreliable because the milk in my ducts could be misread as a tumor or could conceal a tumor, leading to a false-positive or false-negative result.

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No one told me that I had other options, such as MBI. I had to discover that on my own. And as one friend said to me, "What bothers me is how many sisters aren't equipped to ask the question you posed, and how many may perish because they aren't so equipped."

I thought about all this while reading the new guidelines. I thought about which women I could interview, which experts I could mine for data. Then I realized that I had never really talked to my own sister, Tammie, about her experience. I had never really asked her what she was feeling, raising two children alone in Atlanta, working full time and living away from family.

What follows is audio of that conversation, an unedited talk between big sister and little sister, both now grown women. It contains a little laughter, a little disagreement and a little family business. We talked about her fears, her determination to stay alive for her family. The conversation also shows how, even when staring possible death in the face, black women are conditioned to be strong for those around them. We take pride in not being "weak," in hiding our struggles so that we won't be a burden to anyone else.

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She talked about finding the lump in the shower and being terrified to tell her children because our mother had died so young and her greatest fear was not being there for them. She talked about how being diabetic, another illness that disproportionately affects women of color, compounded her health risk. She told me about the friend who cooked for her and the friend who tried to hide how much of her hair was falling out by stuffing it into her own pocket when she combed it for my sister at her desk at school.

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This conversation made me realize that organizations like the American Cancer Society do not truly care about black women. The new recommendations further drive home the point that "women" by default means white and that our health and well-being are peripheral issues.

If we are not our own strongest advocates, no one else will be.

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As my sister, Tammie, said about the early detection that the ACS no longer recommends: "One, get checked. Two, it's not a death sentence. You can beat it."

Listen below: