1 in 5 women with breast cancer don’t know about test results that might help them avoid chemo

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Ninety percent of women said they were aware that they had taken a to determine their risk profile, but the percentage who knew their results varied significantly by race and ethnicity.

Although 90 percent of women with early-stage breast cancer said they were aware they took a genomic test that identified their level of risk for a recurrence of the disease, 1 in 5 didn’t know the results of that analysis, according to a new fact sheet by the UCLA Center for Health Policy Research.

The test, called gene expression profiling, or GEP, is used by physicians to help guide treatment decisions and can potentially help people avoid unnecessary chemotherapy. One of a number of emerging “precision medicine” genomic technologies, the GEP estimates the activity of specific genes in breast cancer cells, which can help predict whether there is a greater chance for breast cancer to return. Those with a high risk for cancer growth benefit by having chemotherapy as part of their treatment, the authors write, but chemo has no added value for those with a low risk.

The report is based on a national study of nearly 900 women younger than 65 who were diagnosed with early stage estrogen-receptor–positive, lymph-node–negative breast cancer. The Center for Health Policy Research collaborated with researchers from Harvard University’s Brigham and Women’s Hospital and Aetna.

The study also found that 15 percent of Hispanic women with a low risk for recurrence of breast cancer had unnecessary chemotherapy as part of their treatment, more than double the rate for the group as a whole (7 percent).

“No one should have to go through the stress and discomfort of chemo without understanding the personal risks and benefits,” said Ninez Ponce, the center’s associate director and senior author of the study. “At the very least, patients should know their options.  Right now, some women may be making treatment decisions based on incomplete information.”

Although 9 in 10 women surveyed said they were aware that they had taken a test that would determine their risk profile, the percentage who knew about the test varied significantly by racial and ethnic group. Only 78 percent of Hispanic women and 85 percent of African-American women were aware of the test, compared with 94 percent of white women and 98 percent of Asian-American women.

Additionally, approximately 20 percent of those surveyed said they still did not know whether the test result indicated a high or low risk for recurrence of cancer — a significant information gap. Nearly 10 percent of Hispanics and 6 percent of African-Americans said their doctors did not discuss the test or test results with them, compared to just 3 percent of whites and 2 percent of Asian-Americans.

Among the high-risk patients, all of the Hispanic and Asian-American women and 81 percent of African-American and whites had chemotherapy, according to the report.

One in eight women will be diagnosed with breast cancer in her lifetime. The authors write that women who know they have a low risk for recurrence have the opportunity to avoid overtreatment and the side effects of chemotherapy, which include fatigue, hair loss, nausea, vomiting, diarrhea, bruising and bleeding.

The research was funded by Aetna.

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