The Breast Cancer Nobody Is Talking About

In May 2006, as she was getting dressed for work, Lori Booker felt a small lump in her left breast. Only 32, she was concerned but thought it was probably just a cyst and made an appointment to see her gynecologist. With a demanding job as a computer teacher at a Chicago public high school, Lori missed a couple of appointments, and two months later, when she finally had her first mammogram, the lump had doubled in size. A biopsy came back with grim results: She had aggressive, advanced-stage breast cancer. Crying, Lori thought the lab must have made a mistake. "I'm too young for this," she sobbed.

Angel Jacobs, 29, figured the same thing. A single mother of a 3-year-old, she was sure what she felt in her right breast was nothing to be anxious about, but an ultrasound found a tumor. It turned out to be the same type as Lori Booker's.

A decade ago, the fact that both of these women were under 35 would have surprised oncologist Olufunmilayo Olopade, MD, director of the Cancer Risk Clinic at the University of Chicago Medical Center. But not anymore. Lori and Angel are like many of the breast cancer patients Olopade (nicknamed Funmi) has seen, both in her native Nigeria, where she studied medicine, and on Chicago's South Side—women who are black, unusually young, and diagnosed with aggressive "triple negative" tumors that are difficult to treat.

"I had never heard of that type of cancer before," Lori recalls. "I was scared. It made me think I was a triple loser."

The last decade has delivered increasingly good news about breast cancer. Although the disease is expected to strike an estimated 240,510 American women this year, the majority are diagnosed after menopause and have tumors that can be treated with a combination of chemo and the latest hormone or targeted therapies. For the most common kind of breast cancer—hormone receptor positive (meaning tumor growth is driven by estrogen or progesterone)—drugs like tamoxifen and Femara have boosted survival rates. Herceptin, a breakthrough targeted drug, improved the outlook for HER2-positive tumors, which have an excess of a protein called human epidermal growth factor receptor 2.

None of the new treatments, however, can touch breast cancers that test negative for estrogen, progesterone, or HER2; the only option for such triple negative cases is chemotherapy, which may or may not work.

Striking the young and spreading rapidly, this type of virulent breast cancer was hardly a blip on the radar of oncology research until about five years ago, when groundbreaking studies by Olopade and others brought it to the attention of the medical community.

The daughter of an Anglican minister, Olopade came to the United States in 1982 hoping to coax her brother back home after he finished graduate school here. During her visit, though, political unrest in Nigeria worsened and she decided to stay put and complete her residency at Chicago's Cook County Hospital. Later, she joined the faculty at the University of Chicago as a professor of medicine and human genetics. It was on a trip home to Nigeria for a niece's wedding in 1997 that Olopade visited a cancer clinic and paused when she passed the women in the waiting room—they were all so young. "What is this about?" she wondered. "It was the same thing I was seeing with my patients back in Chicago." Later, she decided to initiate a study. A collaborating doctor collected tumor samples from 378 women in Nigeria and Senegal and brought them back to her lab. This was a big step. "In some African languages," says Olopade, "there are no words for 'breast cancer.'"

After her research team analyzed the tissue samples and compared them with those of more than 900 Canadian women primarily of European descent, Olopade was amazed by the results. The tumors in the African women were very different, a whole other form of the disease. They often lacked estrogen receptors and were more likely to originate from the outer basal cells of the breast rather than the more usual inner milk-secreting luminal cells. A landmark study by researchers at the University of North Carolina-Lineberger Comprehensive Cancer Center in 2006 found that, remarkably, this basal-like "triple negative" subtype showed up in 39 percent of the study's premenopausal women who were African-American, compared with only 16 percent in those who weren't. A larger study published this summer in the journal Cancer confirmed that in the United States, black women overall are twice as likely to have triple negative tumors as white women. In general, this type of breast cancer has one of the worst survival rates. These findings help explain why young black women are more likely to get breast cancer early—10, 20, 30 years before menopause—and have nearly double the odds of dying from it.

What causes this aggressive cancer, and why would it affect one population more than another? One clue may be the BRCA1 gene. "Women who have mutations of this gene are at higher risk of getting breast cancer," says Ruth O'Regan, MD, associate professor of hematology and oncology at the Emory Winship Cancer Institute in Atlanta. "And that mutant gene also appears to play a role in these triple negative cancers. But exactly how is not clear."

Mary Jo Lund, PhD, research assistant professor at the Rollins School of Public Health at Emory, co-authored two studies of women in Atlanta to see whether economics plays a role in triple negative disease. "Even when we adjusted for socioeconomic status and delayed access to healthcare," she says, "black women were twice as likely as white women to have triple negative tumors. So it is not just about poverty. There appear to be true biological differences."

Still, she and other oncology researchers, including Olopade, who received a $500,000 MacArthur award in 2005 for her work, remain convinced that some interaction between genetics and the environment triggers the disease. As a result, some researchers are now exploring how prolonged stress—from factors like income deprivation, social isolation, and exposure to violence—may be altering the body's biochemistry to produce gene mutations.

Lund goes on to quote a colleague who said, "I can't help but think that if these prevalences had been seen in white women, we'd have already found new targeted treatments for these tumors." Asked if she believes that's true, Carolyn Runowicz, MD, past president of the American Cancer Society, counters, "It's not that researchers are dragging their feet. The technical ability to diagnose cancer subtypes like triple negative tumors has only emerged in the last decade." And many African-Americans may be wary of participating in clinical trials—a suspicion that dates back to the notorious Tuskegee experiment, in which 399 unwitting black men with syphilis were used as guinea pigs in a government-sponsored study. For 40 years beginning in 1932, researchers withheld treatment so they could study the progress of the disease, and many of the men died.

When Karen Neely 35, An African-American corporate defense lawyer in Atlanta, was diagnosed with triple negative breast cancer in June of last year, she quickly discovered that tamoxifen, Herceptin, and other targeted drugs would not be part of her treatment. Neely's cancer was caught early, and after four cycles of chemotherapy followed by a lumpectomy and radiation, she is cancer-free. But she knows that her disease is more likely to return after two years than hormone-driven cancers. "I do a lot of praying," says Neely, who started Triple Pink, a nonprofit organization devoted to educating and raising research funds for her kind of cancer.

Lori Booker and Angel Jacobs weren't as lucky. Diagnosed with advanced tumors that had spread to their lymph nodes, they both underwent mastectomies. Angel is being treated experimentally with specific chemotherapy drugs that kill off connections between the tumors and their blood vessels. She is also participating in Olopade's $9.7 million study at the University of Chicago, funded by the National Institutes of Health, in which researchers are examining various medical and social factors affecting triple negative women both in Nigeria and Chicago. Other researchers are looking for clues to help doctors recognize the disease long before the tumors develop with the goal of finding an effective treatment.

In the meantime, Olopade wants women to know that a diagnosis of triple negative cancer is "not a death sentence. It's aggressive but can be treated," she says. "The earlier the detection, the better." Most of the current general screening guidelines—including an annual mammogram beginning at age 40—are primarily drawn from data based on Caucasians, according to Olopade. That's clearly too late for some women. "If you're at risk," she says, "you don't want to wait until you're 40 to be screened."

As for Lori and Angel, they have their good days and bad days. In Lori's case, she went through a particularly difficult patch when she and her boyfriend broke up and her beloved cat died. Through her tears, she asks: "Is there something I did to get this type of cancer? Is it the food I ate? Something in the water? Stress from my job? What's really going on here?"

Researchers are racing to find out. The answers, they say, could be here in another five years.

Mary A. Fischer is the author of the memoir Stealing Love (Harmony).