Breast Cancer Patients Often Don't Know Details of Their Tumor

January 27, 2015

Many women with breast cancer do not understand the details of their tumor characteristics or how they relate to specific treatment options, according to a new study.

Many women with breast cancer-particularly minorities-do not understand the details of their disease or how they relate to specific treatment options, signaling a need for clinicians to focus on improved education and communication, a recent study reports.

Researchers surveyed a diverse group of 500 women in northern California diagnosed with stage 0–III breast cancer to assess their familiarity with details of their diagnoses, including stage, receptor status (estrogen receptor [ER] or human epidermal growth factor receptor 2 [HER2]), and grade. Between 32% and 82% of women reported knowing the characteristics of their disease but only 20% to 58% were able to correctly report them, with black and Hispanic patients less likely than white patients to have correct information. The results are published online in Cancer.

“Our results dramatically 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,” the authors wrote. “Improving a patient’s understanding about why a particular treatment is important for her individual situation (ie, hormonal therapy because she has ER-positive disease or trastuzumab because she has HER2-positive disease) may lead to more informed decisions and better adherence to treatment plans.”

Lower educational attainment and health literacy also were associated with less knowledge about tumor characteristics but did not eliminate the disparity between white and minority patients, the authors noted. The findings suggest that more attention should be paid to how providers communicate information to different types of patients to facilitate better understanding.

The authors pointed to past studies showing that minority patients tend to ask fewer questions and be less active participants in their own care than white patients. Providers may benefit from cultural competency training and learning how to tailor the way they transmit information to individual patients, they said.

The authors also noted that many older patients had poor knowledge of their disease, possibly because they prioritize other comorbidities, struggle with memory loss, or are less active participants in their care due to caregiver involvement.

The results showed an association between knowing and correctly reporting ER status and receiving hormonal therapy in women with ER-positive/progesterone receptor (PR)-positive cancers, which may partially explain high rates of treatment non-adherence. Rates of treatment were 86% among women who knew their ER status vs 71% among women who did not.

This study, combined with past research, “support a hypothesis that improved general knowledge as well as improved understanding of one’s tumor characteristics and the reasons for personalized treatment recommendations may improve adherence, and ultimately, outcomes,” the authors wrote. “In addition, improved knowledge about her own disease may impact a woman’s trust, communication, confidence, and satisfaction with her treatment team.”

The study is the first to examine women’s knowledge about their disease characteristics, as opposed to understanding general treatment options and risks, and highlights the need for clinician communication strategies customized to individual patients.

“These observations highlight the need to better educate our patients about their tumors and to further examine how knowledge about one’s cancer may contribute to receipt of care, adherence, and, ultimately, outcomes,” the authors concluded.