In 2005, Living Beyond Breast Cancer (LBBC) conducted its Silent Voices survey—the first nationwide assessment of the psychosocial needs of women living with metastatic (or stage IV) breast cancer. With public attention traditionally focused on cancer prevention and screening, our survey revealed that women whose cancer had spread (metastasized) to distant parts of the body, and was therefore incurable, felt isolated from the majority of patients with early-stage breast cancer. The survey also showed that information specific to those living with advanced, stage IV, breast cancer was difficult to find.
Responding to these findings, in 2006 LBBC established an annual conference for people living with metastatic breast cancer and began to develop programs to address their specific needs; these included brochures, webinars, and online content, as well as training peer volunteers who were diagnosed with this advanced disease.
Also during that period, individuals living with metastatic breast cancer began meeting online and through social media, expressing many of the same concerns that surfaced in our Silent Voices survey.
Now 12 years later, LBBC’s annual Conference on Metastatic Breast Cancer has become the nationwide meeting place for individuals and national organizations seeking high-quality information about metastatic breast cancer and a platform to raise their voices. Many of the conference’s first-time attendees speak of the emotional power that sweeps over them when they see hundreds of other people in one room who share this diagnosis.
Hear My Voice
One of the focal points of the annual conference is the Hear My Voice outreach volunteer program. Founded in 2015, Hear My Voice trains people with metastatic breast cancer to educate the public about this disease and connect to others who are living with the disease to share information and resources.
So far, the program has trained 135 volunteers from across the country, helping them to raise their voices to make a difference in their physical and digital communities. Their efforts have connected more than 100,000 people to information and education about metastatic breast cancer.
Among them is Martha Carlson, age 53, of Brookfield, Illinois, who completed her training in 2017. As an alumna of the program, she mentors new trainees while continuing to make a difference in her community. Martha’s story is an example of the important role advocacy plays in her life.
My working life has revolved around words. I was an editor of daytime television, beauty, and general interest women’s magazines, and a proofreader for various orthodontic journals, so it was inevitable that when confronted with a new diagnosis of metastatic breast cancer at age 50, I would turn to words to find a path forward. I started writing about my experiences online, and found that this writing had profound repercussions on my own well-being.
One of my essays caught the attention of Katherine O’Brien, who works with the Metastatic Breast Cancer Network and has stage IV breast cancer herself. When Katherine reached out to me, I didn’t know about organizations with a focus on metastatic disease. I often felt isolated and alone, not quite able to connect with the women running the support programs in my area. The “stage IV” label was hard to bring up, and I felt that other people didn’t understand how my experience was not like that of someone with a chance at a cure.
Thinking back to that period now, I feel sad about my feelings during the early days of my diagnosis. It’s hard to be so alone, facing something impossible to understand, and it’s the feeling of connectedness I suddenly had that motivates me to continue writing about my experience and sharing the resources I’ve found.
When the opportunity to apply for LBBC’s Hear My Voice program came up, I jumped at it. I’ve always been a little opinionated, but I’d never done anything like that program, and I didn’t know what to expect.
Becoming an Advocate
I found out that advocating is standing up when it matters, and raising your voice about something you already care about. So these days, I call myself an advocate. I may not do it like Catherine or like anyone else I know, but that’s one of the great things about being an advocate: we each have our own voice, strengths, and interests.
And together, we’re continuing the hard work of women and men who came before us—making a difference in research, knowledge, medical care, and quality of life for all people living with metastatic cancer.
Of course, the time and energy I give to speaking about metastatic breast cancer is also a gift to myself. It has connected me to people whose persistence and optimism give me something to live up to.
It has led me to people, places, and research that I would have never found on my own. It has given me a sense of purpose instead of hopelessness.
The LBBC 2018 Conference on Metastatic Breast Cancer was held April 20-22 in Philadelphia. For recorded meeting highlights and more information, visit www.LBBC.org/2018metsconf.
- Silent Voices was the first survey about the psychosocial needs of women with advanced or metastatic breast cancer
- Metastatic breast cancer means the cancer has spread to other parts of the body and can be treated but not cured
- Women with metastatic breast cancer felt isolated from the majority of patients with early-stage breast cancer
- Living Beyond Breast Cancer’s Hear My Voice program is helping people to connect and improve the quality of life of patients with advanced cancer