Breast cancer is a condition that begins in the breast tissue, most often in women and people assigned female at birth. Treatment depends on the stage of cancer and may consist of chemotherapy, radiation, immunotherapy or surgery. Regular screening and understanding the genetic component of breast cancer increases the likelihood of catching this condition in its earlier, easier treated stages.
Breast cancer screening is associated with lower breast cancer-related deaths. Research conducted by investigators at Siteman Cancer Center and Washington University School of Medicine in St. Louis indicates that different recommendations for breast cancer screening may lead to mistrust, but recommendations still reinforce high overall interest in screening. This study appears in Journal of General Internal Medicine.
Research Background and Questions:
Cancer beginning in the breast occurs when abnormal cells begin to grow out of control in the breast tissue, often first detected as an unusual lump in the breast. Tumors beginning in these organs can spread to lymph nodes, tissues and other organs in the chest as it progresses.
Many of the risk factors for developing breast cancer (traits that increase the potential for cancer to begin) cannot be avoided, because they are genetic. Having regular screenings if you believe you are higher risk or have a family history of breast cancer can prevent any cancerous cells from advancing to a later stage. Doctors provide recommendations to how this screening can help detect cancer early.
Issues can occur when there are different recommendations from different sources, such can be the case with broadly communicated screening campaigns. Conflicting breast cancer screening recommendations have the potential to diminish informed decision making about screening. Specifically, conflicting recommendations may leave patients uncertain about which sources to use and trust. This is especially possible for patients with limited health literacy. In this study, health literacy is defined by a patient’s ability to read and understand information about their condition, diagnosis, treatment options or other outcomes. Lower health literacy only means that it is harder for patients to comprehend the sometimes complex, unfamiliar medical language provided.
In this study, researchers presented mammography screening recommendations from three leading organizations to racially and/or ethnically diverse women ages 40–75 years who had varying levels of health literacy. The purpose of this project was to investigate women’s knowledge, attitudes, and intentions for breast cancer screening mammography after hearing different screening recommendations.
Research Methods and Results:
Researchers used a multimethod study design with focus groups and questionnaires. Focus groups included (1) presentations on national screening recommendations and the potential benefits and harms of screening and (2) an interactive discussion. One hundred thirty-four women participated in the research, although it is recognized that women are not the only people who experience breast cancer. Participants were Latina, Black and non-Latina White, each group representing roughly one-third of the sample group. Approximately one-quarter of these participants had limited health literacy and almost one-fifth had limited numeracy, or literacy of numbers.
The main data collected during these events focused on participants’ knowledge and perceptions of benefits of screening mammography, knowledge and perceptions of harms, and their screening intentions. The data from these stages were transcribed and analyzed.
Considering national screening recommendations, participants questioned the motives of the recommendation-making agencies, including the role of costs and how these related to differing recommendations. Participants expressed concern that they were not represented (e.g., their race/ethnicity) by data that directed these recommendations. Immediately after the focus group activities, most participants intended to undergo screening within the upcoming year.
Conclusions and Moving Forward:
Divergent breast cancer screening recommendations may lead to mistrust and confusion about when or how a patient should be screened, but recommendations to screen also reinforce high overall enthusiasm for screening. In general, patients questioned differing recommendations. Their concerns appeared to renew their focus, however, on screening earlier, later in life, and more frequently.
Research findings suggest that at the population level, pro-screening messaging for breast cancer has been so impactful that patients’ overall interest in frequent screening appears to remain high despite inconsistent recommendations. Differing recommendations were viewed as a reflection of limitations in previous data, possibly reflecting the interests of dominant versus marginalized groups. Black and Latina participants questioned how adequately minority women were included in the data supporting recommendations.
These concerns are well-founded. Inclusion of racial and ethnic minorities in research cohorts and clinical trials is lacking, and racism in the health care system is well-documented. There is also limited evidence on the physical, psychological, and financial impacts of screening among racial or ethnic minorities. Physicians must consider that minority patients experience distinct and overlapping racism and discrimination as they consider breast cancer screening.
“To address these concerns, efforts should be made to increase transparency in guideline development,” writes Ashley J. Housten, OTD, MSCI, OTR/L, Assistant Professor of Surgery at Washington University and first author of this research. “Participants also suggested that a consistent set of recommendations from one collaborative group would be clearer than the multiple conflicting recommendations.”
As screening programs move toward personalized risk-based screening recommendations, considerations of race, ethnicity, and racism should be included in clinical algorithms, as they are essential to provide consistent screening and treatment for all patients.
Treating Breast Cancer at Alvin J. Siteman Cancer Center
Breast cancer is often first detected at regular screenings. If your physician determines your risk level is average, between the ages of 25 and 40, you should have a clinical breast exam every 1-3 years and practice “breast awareness.” At age 40, you should begin yearly mammograms and annual clinical breast exams. For those with a higher risk of breast cancer, such as those with blood relatives who have a history of breast cancer, you should begin yearly mammograms and clinical breast exams 10 years before the age at which cancer was diagnosed in your family member.
Patients who come to the Siteman Cancer Center for treatment of breast cancer are seen by a team of Washington University Physicians— surgical, medical and radiation oncologists — often during the same visit.
If you have would like to make a breast cancer screening appointment, please schedule a mammogram with us. Newly diagnosed patients also may call the registered nurses in our Patient Care Coordination Center, toll-free at 800-600-3606 from 8 a.m.-4:30 p.m. weekdays.
Physicians responsible for this study include
Ashley J. Housten, Diana S. Hoover, Maggie Britton, Therese B. Bevers, Richard L. Street, Lorna H. McNeill, Larkin L. Strong, Jolyn Hersch, Kirsten McCaffery, Robert J. Volk
Publication citation:
Housten, A.J., Hoover, D.S., Britton, M. et al. Perceptions of Conflicting Breast Cancer Screening Recommendations Among Racially/Ethnically Diverse Women: a Multimethod Study. J GEN INTERN MED 37, 1145–1154 (2022). https://doi.org/10.1007/s11606-021-07336-w