The period after active treatment is a time of heightened anxiety for many breast cancer survivors as they graduate from medical routines and also become concerned about recurrence. Zero Breast Cancer has spent the last couple of years laying the groundwork for an integrated, evidence-based educational campaign focused on breast cancer recurrence prevention for survivors. In order to ensure our campaign meets the needs of post-treatment survivors—especially underserved survivors, including racial/ethnic minorities, gender/sexual minorities and people who have lower incomes—we have been working with patients, survivors, caregivers and the professionals that serve them to collect information and better understand diverse points-of-view. We would like to take a moment to update you on our current work in the area.
Collaboration is key priority of ZBC because it ensures our messages will have the greatest impact. One group launched by ZBC, the Breast Cancer Survivorship Navigation Project (BCSNP), has made partnerships and collaboration central to how it operates. The BCSNP includes patients, survivors, clinical staff, social workers, advocates, non-profits and researchers from diverse backgrounds. Since 2015, the group has gathered frequently to meet its mission of improving the quality of life and well-being of underserved breast cancer survivors. Meetings involve lively discussions in order to ensure work is inclusive of every survivor.
In order to incorporate perspectives beyond BCSNP members and better understand post-treatment survivors’ unmet needs, the group created a survivor engagement survey with qualitative and quantitative questions. Available in English, Spanish and Chinese, the survey was distributed by BCSNP members and their colleagues to people across the San Francisco Bay Area. We were encouraged to receive 62 responses from a very diverse group of survivors!
Mental health and cognitive effects of treatment were two of the largest unmet needs identified by this group in their responses. Often survivors describe feeling that they “should” feel better after finding out they are disease-free and are surprised when they feel worse due to a suddenly decreased support system and new anxiety about recurrence. Also, the cognitive side-effects from treatment may be unexpected, with a couple people noting that they found out about the cognitive side-effects of treatment from support groups, not health care providers. Stress may be a risk factor for breast cancer recurrence and learning how to manage it may reduce this risk.
Perhaps the most exciting result of our survey is that more than half of the survivors who responded want to be involved in our BCSNP survivorship network! This speaks to their desire to give back by improving others’ post-treatment experiences.
In addition to our work with the BCSNP, ZBC is the community partner on Kaiser’s Pathways: A Study of Breast Cancer Survivorship. We are facilitating the Community Advisory Board (CAB), which includes participants of the Pathways’ study, to identify and develop key topics for education and outreach.
Written by Lianna Hartmour, ZBC Education Coordinator.