Many women lack basic understanding of their breast cancer, new study finds

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A new study from Dana-Farber Cancer Institute found a surprising lack of knowledge among breast cancer patients about the basic characteristics of their disease – how advanced it is (stage), whether it is fueled by estrogen, whether it can be treated with trastuzumab (also called Herceptin,) and the grade assigned by pathologists.

All these factors are taken into account when treatments are recommended for women, and the researchers suggest that patients who fully understand their cancer may be more likely to adhere to their treatment regimens.

Women from minority groups in the diverse population of patients studied were less likely than white women to know this information, according to the findings reported online by CANCER, a peer-reviewed journal of the American Cancer Society.

“We were really surprised by the results,” said Rachel Freedman, MD, MPH, the first author of the report. Freedman is a medical oncologist in the Susan F. Smith Center for Women’s Cancers at Dana-Farber. Nancy Keating, MD, MPH, of Brigham and Women’s Hospital, is senior author.

The study is believed to be the first to pose these questions, said Freedman, who proposed the research after discovering in her own practice that many women did not understand the reasons for the specific treatments they were receiving.  This “astounding” discrepancy also emerged in focus group sessions, said Freedman. Although past research has examined a patient’s general cancer knowledge with regard to basic treatment rationales and reasons for screening, this is the first study to examine how much women know about their own cancers.

Telephone interviews were carried out with 500 women in the California Cancer Registry who had undergone surgery for breast cancer. They were asked about the stage of their tumor (0 through 4); whether it was low, intermediate, or high grade; whether it was ‘HER2-positive’ (generally treated with trastuzumab), and whether it was ER (estrogen-receptor) positive. The researchers then compared the answers with the data from the California Cancer Registry.

The results: 55 percent of women said they knew their ER status; 33 percent reported knowing their disease stage; 32 percent said they knew the grade of their tumor, and 13 percent said they knew all four characteristics. Fourteen percent reported knowing none of them.

In reality, the researchers determined, 56 percent of women were correct on their ER status, 58 percent reported the correct HER2 status, 57 percent were correct about the cancer’s stage, and 20 percent reported the correct grade. Only 8 percent were correct on all four questions.

Women who self-identified as Hispanic or black had less knowledge about their tumors. Less knowledge was also associated with having less formal education and lower “health literacy.”

“Of all of these factors, a tumor’s grade is likely the least important element for patients to know, although physicians use grade to make decisions about treatments, including chemotherapy,” Freedman said.

Knowing the stage is more important, she said, because it is a measure of the patient’s risk, and the knowing the cancer’s HER2 status could help patients with HER2-positive tumors understand why they need to take trastuzumab (Herceptin) for a year.  Patients with ER-positive breast cancers often take tamoxifen or aromatase inhibitors for many years, so that knowledge might motivate such women to stick to the regimen.

Freedman believes that patients’ knowledge of their cancer “has to be a good thing” and plans to look for evidence on that point in further research.

She also plans to study the effect on patient knowledge of doctors and health care providers’ different styles in communicating the facts. She’s considered possible interventions, such as patient videos, smart phone apps, and checklists.

“Clearly there’s a lot to be done,” Freedman says.

Other authors are Elena Kouri, PhD, of Harvard Medical School, and Dee West, PhD, of the Cancer Registry of Greater California.  The research was supported by Komen for the Cure Foundation.

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