Survey finds perceived risk of recurrence is low in African American breast cancer survivors

Feb 15 2007

A unique survey of African American breast cancer survivors at heightened risk for hereditary breast cancer has found the majority do not believe they have an increased chance of developing the cancer again.

Researchers from the University of Pennsylvania, reporting in the February issue of Cancer Epidemiology, Biomarkers & Prevention, say these findings suggest it is important to ensure that African American women understand their risk of developing cancer and genetic counseling to address cultural beliefs and values may be one way of doing so.

“Having a personal and family history of breast cancer are known risk factors for breast cancer, and it is surprising and worrisome that most of these women with such a history don’t recognize that risk,” said the study’s lead author, Chanita Hughes Halbert, Ph.D., assistant professor of psychiatry and Director of the Community and Minority Cancer Control Program at the University of Pennsylvania’s Abramson Cancer Center.

Halbert’s research focuses on understanding the socio-cultural underpinnings of cancer prevention and control behaviors among ethnically diverse populations so that interventions can be designed that reduce cancer morbidity and mortality.

One such intervention is genetic counseling that often includes testing whether a woman has a mutation in one of two genes (BRCA1/BRCA2); women with these genes are at greater risk for developing breast cancer than women without alterations in those genes.

In an earlier study, Halbert found that African American women with a family history of breast cancer had a lower risk perception than did Caucasian breast cancer survivors. In this study, she and a team of researchers at Penn attempted to tease apart the factors that might lead to this disparity, one of which, they believe, is the way survivors think about time.

“Attitudes about time are aspects of a cultural worldview,” Halbert said. “We thought, based on earlier work, that African American women who were most concerned about things that might happen in the future would have a heightened perception of risk.”

The researchers surveyed 95 African-American women who had a personal and family history of breast cancer that was suggestive of hereditary disease, had been treated for the disease with either lumpectomy or mastectomy, and had one intact breast. All of the women were offered the opportunity to participate in genetic counseling.

The researchers found that 53 percent of respondents felt they had the same or a lower risk of developing breast cancer again compared to other women, but that a substantial minority of the survivors (47 percent) reported that they had a higher or much higher risk.

Investigators found support for one of their hypotheses -- that women with more education were significantly more likely to perceive a higher risk of breast cancer recurrence.

But their hypothesis about time perception was wrong. Instead, perception of risk was related to how often a woman thought about the past. Women who thought more about the past were about three times more likely to report that they had a high risk of developing breast cancer again.

That finding makes sense, Halbert said, if respondents have a continued sense of vulnerability. “Because past experiences with disease may still be salient to women who think about the past a lot, these women may be likely to believe that they have a high risk of developing breast cancer again,” she said.

The findings suggest that during genetic counseling, more focus should be placed on providing cancer risk information and in understanding the basis of risk perceptions, especially how they may be related to past experiences with disease, Halbert said. “We can enhance genetic counseling if we develop a better understanding of why women believe they may be at higher or lower risk,” she said.

The study was funded by a grant from the Department of Defense.