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Breast Cancer Patients Lack Information About Their Cancer

The problem is greater among minority women

Many women with breast cancer don’t have basic knowledge about their disease, such as their cancer stage, says a new study. The knowledge gap was even more pronounced among minority women.

“We certainly were surprised at the number of women who knew very little about their disease,” said Rachel Freedman, M.D., assistant professor of medicine at Harvard Medical School and a medical oncologist specializing in breast cancer at the Dana-Farber Cancer Institute.

Though the study didn’t examine the reasons for the lack of knowledge, Dr. Freedman believes women may be overwhelmed by their initial diagnosis. And individual doctors vary in how much information they share with their patients and how well they explain the disease’s characteristics.

In the study, researchers asked 500 women four questions about their cancer, including questions about tumor stage, grade and hormone receptor status. Overall, 32 percent to 82 percent of women reported they knew the answers to the questions. But only 20 percent to 58 percent were actually correct. Ten percent of white women and 6 percent of black and Hispanic women knew all of their cancer characteristics correctly.

Stage refers to the extent of the cancer, whether it is invasive or not and if lymph nodes are involved (stages 0 through IV). Two-thirds of white women study participants and about half of black and Hispanic women were able to identify their cancer’s stage. Grade describes how the cancer cells look under the microscope and help predict its aggressiveness. Just 24 percent of white women, 15 percent of black women and 19 percent of Hispanic women knew what their cancer grade was.

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Two other questions asked about hormone receptor status. One asked whether or not a cancer was HER2 positive. HER2-positive tumors test positive for a protein (human epidermal growth factor receptor 2) that promotes cancer cell growth. Almost two-thirds of white women, and slightly more than half of black and Hispanic women were able to answer this question accurately.

The other question about hormone receptor status was whether or not the cancer was estrogen receptor-positive. Estrogen receptor-positive cancers need estrogen to grow. Seventy percent of white participants knew their estrogen receptor status, but fewer than half of the black and Hispanic women did, the study revealed.

The study indicated that black and Hispanic women were less likely than white women to know and have correct responses in each measure. Even after researchers took into account the women’s education and health literacy, there were still racial and ethnic differences.

“This is a modifiable problem,” Dr. Freedman said. Health-care professionals can address the knowledge gap. She also recommends that breast cancer patients bring someone to appointments. “When patients come with people, it always helps,” she said. They can take notes for the patient or think of questions that might not occur to the patient. Other experts suggest women talk to other patients with the same diagnosis. This approach, called peer navigation, has proved helpful.

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