Connecting You to the Many Voices of Those Living With MBC

Catherine Ormerod, MSS, MLSP, LBBC's Vice President, Programs and Partnerships at Living Beyond Breast Cancer, is responsible for overseeing the implementation of all direct service and partnership initiatives in support of Living Beyond Breast Cancer’s mission. 

Last year as part of its long-standing commitment to those living with metastatic breast cancer (MBC), Living Beyond Breast Cancer launched an advocacy program called “Hear My Voice.” We introduced the program on Metastatic Breast Cancer Awareness Day, the one day in October dedicated to the raising awareness of the needs and voices of people with MBC.  Because women living with MBC will always be in treatment, their outlook and concerns are different from women treated for early-stage breast cancer.  As an organization that represents all people impacted by breast cancer, LBBC is committed to building public understanding of the different stages of the disease.

The first initiative in this program highlighted the many voices of MBC in a blog carnival. On October 13 we posted one blog post every hour, on the hour, for 13 hours. These diverse and riveting stories from women and men living with the diagnosis quickly became our most widely read stories on the blog.

We launched the second phase of the program — the Hear My Voice Outreach Volunteer Program — in the spring of 2015. This  10-month volunteer commitment teaches and refines participants’ communications skills and asks them to find others with MBC in their communities and connect them to resources and information.  We also ask the volunteers to create projects that they work on during their time as volunteers. In addition, each of them participated in an online public education campaign about MBC in September called #BeyondtheBreast. Through strong images on social media, this campaign made the point that metastatic breast cancer is cancer that has spread to other parts of the body.

We at LBBC learned during the past year that the commitment of our volunteers is both deep and diverse.

With all of this, we at LBBC learned during the past year that the commitment of our volunteers is both deep and diverse. Their activities and actions have far exceeded the expectations we set for them in the program.  They have sat on research panels, pitched their stories to local and national news organizations, planned rallies, written books, launched support programs, and met with legislators to demand more research dollars are spent on understanding the process of metastasis.  And they connected hundreds to information and resources, breaking the isolation that study after study confirms is experienced by so many with MBC.

Today, as we recognize Metastatic Breast Cancer Awareness Day, we will highlight some of our most moving blogs written by those living with advanced breast cancer from this past year and our previous blog carnival (see below). Our volunteers continue their work in a stunning variety of ways to push forward change.  And because many others are focused on changing the trajectory of MBC — volunteers, nonprofit organizations, researchers and others — we have the opportunity to move the conversation about MBC forward and thus move closer to achieving our shared vision: ending metastatic breast cancer.

We began the program with 31 volunteers and last month lost a devoted volunteer, dear friend and powerful voice to the disease. We dedicate our efforts this month to the memory of Marcia Taylor.

Please join us and share what you learn. Be a part of expanding the conversation around breast cancer and saving lives. Find out more about MBC, research and resources.

Read a selection of powerful and inspiring stories of women and men living with MBC:

Paying it Forward: Scarlett Gibbs’s story written by Nicole Katze, LBBC’s editor and manager, content development

The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis: An inspiring post written by the late Annie Goodman

Living the Life of Cliches (That Are True): Scott Cotlar writes about common sayings people with MBC hear many times over.

How I Manage Scanxiety: Written by LBBC Board Member Amy Lessack.

Getting the Support You Need as a Young Mom With Metastatic Breast Cancer: The late Terri da Silva on support for young moms living with MBC.

‘You Beat It By How You Live‘: The Late Norma Pitzer-Kelly writes about late ESPN anchor Stuart Scott’s approach to coping with advanced cancer.

Thriving, Despite Almost 2 Decades of Breast Cancer: LBBC Writer and Content Coordinator Erin Rowley profiles Sherry Lawson, who discusses living with metastatic breast cancer and navigating healthcare as an out lesbian woman.

Getting Off the Couch for Wellness: Sarita Joy Jordan writes about finding a passion for exercise and maintaining healthy living practices after an MBC diagnosis.

When Breast Cancer Awareness Is Every Month: This blog post, which kicked off our #BeyondTheBreast Campaign, was written by LBBC Board Member Ayanna Kalasunas.

From the Start: De Novo Metastatic Breast Cancer: Blogger Beth Caldwell on finding out she was de novo metastatic, coping with diagnosis and the benefits of community.

When the Breast Cancer Went Beyond the Breast: Mandi Hudson’s blog post is about discovering she had recurrent stage IV disease.

The Long-Term Merry-Go-Round: 13 Years With Metastatic Breast Cancer: Award-winning blogger Jill Cohen on living long-term with MBC.

Communication, Trust and Dignity in Metastatic Breast Cancer Care: Laura Snyder’s blog post bout making treatment decisions and clear communication in health care.