Every woman is different, and every diagnosis is different.
Even though this is our everyday truth, many agree that the medical industry hasn’t caught up to that reality yet. Laura Esserman, a breast cancer specialist and surgeon, is working in collaboration with the Athena Breast Health Network to change this truth with the Women Informed to Screen Depending On Measures of risk, or WISDOM study.
As she leads the WISDOM study, Esserman’s focus is on inclusivity. She wants to ensure that all women, including women of color—who have been traditionally disenfranchised from receiving adequate health care—are a part of this study that seeks to personalize and revolutionize breast cancer screenings and treatment.
With a goal to enroll 100,000 women between the ages of 40 and 74 without a past or present diagnosis of breast cancer, Esserman faces a unique challenge. WISDOM is asking an unprecedented number of women and women of color to join a medical study. Due to historical injustice, communities of color sometimes distrust the medical industry and its research.
But when women of color are involved in medical studies, it gives us opportunities for advanced health care initiatives and makes us a part of the research conversation. Without the inclusion of communities of color in research, breast cancer will continue to be the number-one killer of Hispanic women and the number-two killer of African American women.
The WISDOM study also removes many of the challenges of participating in clinical trials. Participation is completed online from a computer, tablet or smart phone with no need to travel to a study center or change health providers. WISDOM was designed to be accessible, and offers participation in either English or Spanish.
Women who enroll in WISDOM are asked if they are comfortable being randomized, which means they are assigned to a study group by chance. Those that are not comfortable with randomization or who have a strong preference for one group or the other can choose. WISDOM’s goal is to enroll a population of women that mirrors the diversity of the population across the United States. We have recently opened the study in new locations nationwide that include greater diversity, with an emphasis on outreach to African American populations in Illinois, Louisiana and Alabama.
Those who are in the risk-based avenue of the five-year study, will receive a comprehensive risk assessment that includes a breast health questionnaire, genetic test (including nine breast cancer genes and assessment of smaller changes called single nucleotide polymorphism’s or SNP’s), and breast density measurement. These risk profiles are then used to generate a personalized screening frequency based on age. Participants will be told when to start and stop screening, and how often to screen. Alongside the clinical research study, there will be an effort to document and evaluate the impact of communicating risk information, focusing on anxiety, risk perception and follow-up services.
Beginning in the 1970’s, health care leaders advised that yearly scheduled mammograms were the most effective way to improve cancer survival rates. However, as mammography screening participation increased, doctors found that diagnosis of early-stage cancers and benign tissue masses naturally increased as well. Studies now show that most early stage diagnosis are in fact tissue masses that are benign or DCIS (Ductal Carcinoma in Situ- abnormal growth cells in the milk ducts), which would never be fatal or are so slow moving that diagnosis at a later stage would still fall within the most effective treatment options.
Personalized care plans, like WISDOM, now appear to be most effective for women. The goal is to tailor more screening to those who are at risk for more aggressive cancers, and safely reduce screening for those at lower risk, to avoid over-treatment and over-diagnosis.
The Athena Network, which is conducting the study in partnership with Blue Shield of California, delivers personalized prevention, screening and treatment for 150,000 women receiving breast care at the University of California medical centers and their affiliates.
The network is named for the ancient Greek goddess of wisdom, strength and society. Drawing from the strength of Athena, we believe we can change our health care system so that medicine and science work for us. We women of color can take control of our health care, releasing the stigma and trauma of participating in research studies.
Having conversations with our health care providers and the women in our lives about breast health, plants the seeds for others to consider their own health care planning that could save so many more lives. These conversations can include understanding our family health histories, which are a great ways to find out if we have elevated risk factors that may play a part in our personalized health care.
With wisdom and strength from women of all backgrounds, together we can shape the future and improve breast cancer screening for all.
Cheryl Ewing is a surgeon at UCSF Carol Franc Buck Breast Care Center in San Francisco.