Commentary: Grassroots support for breast cancer advocates

This week, 26 people with metastatic breast cancer - the kind of cancer that cannot yet be cured - will come together in Philadelphia.

The group, an eclectic one that shares a common purpose, includes 25 women and a man with breast cancer. He is a retired Air Force colonel, one of a few thousand men who each year receive this surprising diagnosis. "I want to be involved in a more direct conversation about cancer," he said.

Selected from 161 applicants, they are the second class of the "Hear My Voice" outreach volunteer program, which takes place at Living Beyond Breast Cancer's annual Metastatic Breast Cancer Conference. They are part of a grassroots movement that has been building for many years among people with metastatic breast cancer (MBC) who feel they have waited for a better future for far too long.

While some people may live for a decade or more with metastatic or stage IV breast cancer, median survival remains three years, and a majority of the public is largely unaware of the disease and the impact it has on people coping with it.

Ten years ago, we commissioned a study of 618 women living with MBC. The 2005 "Silent Voices" survey found that women with MBC reported feeling guilty, abandoned, and isolated from the majority of the breast cancer community as they dealt with anxiety about their cancer that had traveled to another part of the body - usually the liver, lungs, bones, or brain. More recent studies confirm that those living with MBC continue to feel misunderstood, especially by those diagnosed with earlier stages of breast cancer.

An international survey presented in November, "Global Status of Metastatic Breast Cancer: A 2005-2015 Decade Report," pointed out how little attention has been paid to metastatic breast cancer across the world, leading to significant gaps in care, access to information and support, and treatment outcomes. Public health experts predict a 43 percent rise in deaths worldwide by 2030.

On the more promising side of the report, commissioned by Pfizer in collaboration with the European School of Oncology, is an increasing number of efforts to catalyze policymakers, advocates, and the medical community to develop a plan of action to improve MBC outcomes by rendering the disease a chronic illness and ultimately preventing metastasis altogether.

There is a new sense of urgency and opportunity fueled by online communities and social media. In 2013, 15 breast cancer organizations and industry partners united to create the Metastatic Breast Cancer Alliance. The group is working to advance progress in science, increase resources for those living with the disease, and build awareness of how MBC differs from early-stage disease.

Similarly, advocates are finding their voices at conferences. The "Hear My Voice" outreach volunteer program prepares people living with metastatic disease to become leaders in their physical and online communities. Last year's 31 participants, ranging in age from 24 to 68, touched more than 45,000 lives through community-based activities and digital, print, and video media. They applied for positions on research review committees, launched blogs, testified before governmental bodies, collaborated with health systems to better address their needs, trained as peer support mentors, shared resources with their health-care providers, and supported each other with advice and information through a Facebook group.

Jean Burns, 49, of Colorado, a wife and mother of two boys and an intellectual-property attorney, was diagnosed with stage IV breast cancer in December 2013. Like many in her situation, she found being part of an advocacy program to be empowering, offering a sense of control within a disease over which there is none. She and her peers are working toward treatments and a cure for the type of breast cancer that takes lives - that took the lives of two of her fellow trainees since last spring.

Following her participation in the Hear My Voice program, she wrote:

"If we all work together to have a voice, that voice will be heard by the larger breast cancer community. We deserve to be heard - but we have to take the laboring oar ourselves. These are our lives at stake, and being a Hear My Voice volunteer is one way to stand up and let the world know how important your life is."

Catherine Ormerod is the vice president of programs and partnerships at Living Beyond Breast Cancer (LBBC.org) in Philadelphia. cormerod@lbbc.org

To register for Web streaming of the 10th Anniversary LBBC Metastatic Breast Cancer Conference from April 8 to 10, visit http://bit.ly/1RBiYV4.