Breast cancer is not typically on young adults’ radar, and facing a diagnosis during this phase of life comes with a unique set of needs. Individuals diagnosed under the age of 40 often have difficulties finding information and resources addressing their specific challenges. As a result, the experience can be isolating for the newly diagnosed in search of support and answers. That’s exactly why the nonprofit organization Young Survival Coalitionaaims to help young adult warriors.
Founded in 1998 in New York City, Young Survival Coalition (YSC) originally brought together a small group of women under 40 who had been diagnosed with breast cancer. Their motivation stemmed from a lack of specialized support for this age bracket.
Over time, YSC’s efforts blossomed well beyond New York. Today, the organization works under a national model offering centralized resources and events coupled with local support groups and social gatherings around the United States. YSC now offers a range of educational materials, services and programs, both online and face to face. Its website, youngsurvival.org, serves as the main resource hub, while additional offerings are available through YSC’s social platforms including YouTube, Facebook and Instagram.
When facing a breast cancer diagnosis, many young people quickly turn to the internet in search of peer support and information. “Our hope is that youngsurvival.org is the first resource that pops up for them, and it’s extremely important on our end to make sure the information is comprehensive but not overwhelming, and that we’re providing information right from the start of their diagnosis,” says Megan McCann, YSC’s director of community education.
With the younger age bracket in mind, YSC’s educational materials cover topics that are vital to young adults’ experience with cancer, but are sometimes overlooked in a traditional oncology setting. These topics include sexual and reproductive health, parenting young children and career and finances. Website visitors can also download YSC’s Navigator resource guides, with specific editions focused on supporting the newly diagnosed, metastatic, post-treatment and long-term thrivers.
A number of YSC’s educational materials are also available in Spanish. “Over time, we hope that library will grow,” McCann says.
When navigating cancer treatment and beyond, peer support is a crucial reminder that you’re not alone. YSC’s private Facebook groups provide places for any people impacted by breast cancer to meet and connect virtually. Community members come to these safe spaces to ask questions, share resources and support one another. On YSC’s website, visitors can select from the Survivors & Thrivers, Metastatic/Stage IV, or Co-Survivors groups for a registration link to join their chosen Facebook group.
Live online gatherings provide an additional way for peers to connect in real time. YSC’s lineup of regularly scheduled ”virtual hangouts” includes F2F (a general virtual hangout), Metastatic Thrivers, African American Young Breast Cancer Survivors, Male Co-Survivors, Mother Co-Survivors and Health Care Provider Survivors.
For more information on Young Survival Coalition, visit youngsurvival.org.
With an aim to provide educational opportunities for a wide range of audiences, YSC’s public live-streamed talks and events cover issues such as sexual health, fertility, parenting, exercise and the latest information on treatment and research. The YSC YouTube channel offers a number of recordings from past events. McCann notes that these resources can also support health care professionals to better serve young adult cancer patients throughout their unique experiences.
Additional YSC programming includes the “Respected Influencers through Science and Education (RISE) Breast Cancer Advocacy Program,” under which YSC trains thrivers to become more comfortable and well versed so they can advocate for and raise awareness on issues specific to the young adult breast cancer population.
Young adults diagnosed with breast cancer may struggle to find large events tailored to those who have gone through the same experience at the same age. YSC’s answer to this challenge is the YSC Summit. Traditionally the organization’s biggest event of the year, the YSC Summit brings together some 700 attendees from the young adult breast cancer community, including those diagnosed with breast cancer, health care professionals and co-survivors. Sessions range from treatment information and research updates to social events, self-care and long-term survivorship topics. The YSC Summit, held annually, pivoted to a virtual format for 2021, held May 21–23. Attendees joined in on the fun and education over the weekend through conversations, workshops and social activities.
Navigating a breast cancer diagnosis as a young adult can be a confusing and lonely experience. But thanks to the many educational resources and social opportunities offered by organizations like the Young Survival Coalition, you don’t have to face breast cancer alone.
Reflecting on her work with YSC, McCann shares that it’s rewarding to support “a population that might not always get recognized as having those unique needs. Seeing the connections they make and how those continue over time—that’s something I really enjoy.”
For more information on Young Survival Coalition, visit youngsurvival.org.
