Many Women Diagnosed With Breast Cancer Know Little About Their Condition

A study has found that a large number of women diagnosed with breast cancer know little about the basic characteristics of the cancer:

• stage
• estrogen-receptor status
• grade
• HER2 status

The study was done by the Dana-Farber Cancer Institute in Boston and was published online on Jan. 26, 2015 by the journal Cancer. Read the abstract of “Racial/ethnic disparities in knowledge about one’s breast cancer characteristics.”

The researchers did phone interviews with 500 women in northern California who had been diagnosed with stage I to stage III breast cancer from 2010 to 2011:

• 222 were white women
• 142 were black women
• 136 were Hispanic women

The researchers asked the women questions about the characteristics of the cancer with which they had been diagnosed:

• its estrogen-receptor status
• its HER2 status
• its stage
• its grade

The results:

• 55% of the women said they knew the cancer’s estrogen-receptor status
• 33% said they knew the cancer’s stage
• 32% said they knew the cancer’s grade
• 13% said they knew all four characteristics
• 14% said they knew none of the four characteristics

The researchers then compared the women’s answers to the information in their pathology reports:

• 56% were correct about the cancer’s estrogen-receptor status
• 58% were correct about the cancer’s HER2 status
• 57% were correct about the cancer’s stage
• 20% were correct about the cancer’s grade
• 8% answered all four questions correctly

Black and Hispanic women were less likely to answer the questions correctly than white women, even after the researchers took socioeconomic status and general health knowledge into account.

“We were really surprised by the results,” said Rachel Freedman, M.D., a medical oncologist at the Susan F. Smith Center for Women’s Cancers at Dana-Farber and the study’s first author.

The researchers believe this study is the first time women have been asked how much they know about the breast cancer they’ve been diagnosed with; Dr. Freedman proposed the study after seeing many women in her own practice who didn’t understand the reasons why they were receiving certain treatments.

"Our results illustrate the lack of understanding many patients have about their cancers and have identified a critical need for improved patient education and provider awareness of this issue," said Dr. Freedman. "Improving patients' understanding about why a particular treatment is important for her individual situation may lead to more informed decisions and better adherence to treatment."

A breast cancer diagnosis will include the information on the four key cancer characteristics:

• stage
• grade
• HER2 status
• estrogen-receptor status

Still, different labs report results in different ways and use technical terms that aren’t always reader-friendly. Plus, because some tests take longer to run than others and not all tests are done by the same lab, you get different test results at different times, which can be confusing. Patients may have questions for nurses or oncologists.