Young Women with Metastatic Breast Cancer: Leaving a Legacy

Authors:

Jean Rowe (Presenter)
Young Survival Coalition

Michelle Esser, Young Survival Coalition
Stacy Lewis, Young Survival Coalition
Megan McCann, Young Survival Coalition
Maggie Nicholas-Alexander, Young Survival Coalition

Public Health Statement: Young women diagnosed with metastatic breast cancer (YWMBC) face distinct issues and concerns, including the necessity of confronting mortality earlier than expected.

Purpose: Young Survival Coalition’s (YSC) comprehensive survey of YWMBC found that tools to help them communicate about their disease and prognosis would be helpful (76%). Desired tools included templates for leaving a legacy. At YSC’s 2017 Summit for Young Women affected by Breast Cancer, YSC is offering ‘Leaving a Legacy,’ a half-day retreat for YWMBC.

Methods/Approach: Results of a survey to YWMBC (360 completing) from September 2013 through February 2014 showed anticipatory grief, or the feelings and emotions of a loss not yet occurred, was a topic of importance to 82%, However, 71% had not taken steps to seek information. One example of anticipatory grief is the fear that a woman’s children will grow up without her. Seventy-six percent sought tools to communicate about their disease and prognosis. Desired legacy tools included a video project (57%), letter templates (55%), scrapbooking templates (51%) and blog templates (40%).

Based on these survey results, YSC decided that creating the tools and opportunity for YWMBC to leave a legacy was important. YSC is offering ‘Leaving a Legacy: Half Day Retreat for YWMBC’ onsite at the YSC 2017 Summit in Oakland, California. In this dynamic three hour session, participants will learn what it means to leave a unique legacy, hear about different projects they can create and take home a legacy toolkit to continue the creative process.

Results: As of this date, between 60 and 65 YWMBC are registered to attend the Leaving a Legacy retreat, YSC has created a detailed evaluation which these young women will complete at the conclusion of the program. YSC looks forward to sharing the results of these evaluations and any findings about the program.

Conclusions/Implications: Leaving a Legacy is a topic of great importance to YWMBC. Tools can help alleviate stress, provide support and hope and open dialogue with family members.