Our conference: Creating space for the metastatic breast cancer community
Fifteen years ago, Living Beyond Breast Cancer made the groundbreaking decision to create a space for people living with metastatic breast cancer to connect, and to learn. In 2006 we decided to transform our spring conference to focus exclusively on the medical, emotional, and practical needs of people with stage IV disease. We were the first breast cancer organization to dedicate an entire conference to people coping with this diagnosis.
Our confidence in our decision was rooted in research. Just a year before, we approached the powerhouse advocate Musa Mayer with what was then a bold and novel idea – to ask people with metastatic breast cancer about their unique needs for information, support, and practical resources. Our goal was to gather input from 150 people, but in the end more than 600 women responded. The resulting study, Silent Voices, showed people with stage IV breast cancer wanted content specific to their diagnosis but had difficulty finding it. They sought emotional support and connection from people and professionals who understood their experience. Notably, they reported getting support from information, and information from support, a finding that helped guide our approach to addressing the deep sense of isolation most respondents said they experienced.
Silent Voices gave us the research and roadmap we needed to better describe the needs of those with stage IV cancer to our funders and to the broader breast cancer community. We developed our flagship Annual Conference on Metastatic Breast Cancer, a series of printed publications that included a Metastatic Breast Cancer Guide for the Newly Diagnosed, and online content with photos of real people living with the disease. We increased our commitment by adding more metastatic breast cancer volunteers to our Breast Cancer Helpline and by ensuring all core programming included their points of view. By 2014, when Living Beyond Breast Cancer became a founding member of the Metastatic Breast Cancer Alliance, we estimated that up to 40 percent of our programs focused on the stage IV experience.
The next year brought another new effort, with the goal of unleashing the power of our community’s advocacy. Living Beyond Breast Cancer launched the Hear My Voice program. Our first class of 31 advocates inspired and surprised us. We knew they would set to work quickly, but we didn’t anticipate just how quickly. When on the closing day of training they decided to stage a peaceful protest to demonstrate the toll of metastatic breast cancer, we honored and supported their vision. That die-in, on the closing day of our 2015 conference, started a movement that continues today, bringing new strategies and perspectives to our community.
Our most recent work aims to better support the needs of people newly diagnosed with metastatic disease. In the throes of the pandemic, we created a new resource hub on lbbc.org, informed by research we conducted in 2019 with people with metastatic breast cancer and their healthcare providers. We found some similarities, and some key differences, in what each group described as resource needs, and we are building programs to address these gaps.
Much has changed since 2006. Due to our efforts and those of our colleagues, multiple organizations offer metastatic-specific programming. From conferences to podcasts, webinars to advocacy programs, booklets to support groups, there are many more options today to learn and to connect than there were just 15 years ago. With the growth of social media, people diagnosed with metastatic breast cancer today can access private, closed Facebook groups, apps, and online health communities.
Yet some of the most fundamental parts of the metastatic experience have not changed. There are still more than 43,000 Americans dying each year, and stage IV breast cancer remains among the leading causes of female cancer deaths around the world. Despite our gains, many of the more than 168,000 Americans living with this disease report feeling isolated, alone, and misunderstood. Most urgently, we know that people of color bear a disproportionate burden of disease and death, with the outcomes likely to widen due to the pandemic. This is unacceptable. Vital work remains to be done, and we at Living Beyond Breast Cancer remain focused on doing our part to end death, disinformation, and isolation.
As we prepare for the 15th Conference on Metastatic Breast Cancer, I remember the excitement, and hope, we felt when 100 people attended in 2006. That number grew year over year, and by 2019 we hosted nearly 800 people from almost every state. Though I wish we could be physically together this year, going virtual in 2020 allowed Living Beyond Breast Cancer to serve over 1,700 people around the world. The pandemic has encouraged us to re-create the bonds of physical community online, to re-imagine the education we offer to you. And as the world begins to tentatively step back into the traditional spaces we once inhabited, know we will continue to strengthen those bonds – whether in person or in spirit – so that your voices will be silent no more.