Project 528, Part 4: The Community I Almost Missed
At the time of my diagnosis, it was hard to imagine that anyone my age understood what I was going through. While I was aware that support groups existed, I didn't believe that they existed for people like me. How many other women in their early 20s could possibly have breast cancer? No, this was a disease that primarily affected White women over the age of 50. I didn't embrace the power of online communities until after completing active treatment, and when I finally did, I realized that my preconceived notions about breast cancer were wrong.
Young Survival Coalition (YSC) was the first online community that made me feel at home within the breast cancer space. As I was preparing to attend my first YSC Summit in Charlotte, North Carolina, in 2023, I joined their online Facebook group to connect with other attendees before the event. This was my first time being in a (virtual) room full of other young survivors – many in their 20s, like me. I read their stories and realized that I wasn't alone in this journey. The feeling of connection only grew when I met many of my new virtual friends in real life.
The initial reluctance I had about joining an online community was replaced with a sense of empowerment, as I connected with others who made me feel seen and understood. I was able to skip the usual shock I received from others who couldn't imagine being a young adult impacted by breast cancer. Instead, I found myself in a space full of individuals who had experienced the same challenges. The connection and understanding I felt were unlike anything I had ever known, and for the first time, I felt like I could truly make sense of my diagnosis.
This experience isn't unique to me. According to the Project 528 data, 40% of younger breast cancer patients reported using online resources for support. For many of us, it wasn't just about finding information – it was about emotional support, raising awareness, and fueling advocacy efforts. The research also shows that these communities help patients feel more informed about their condition and confident in their treatment decisions. This underscores the value of advocacy and how sharing our stories as survivors can help others who are newly navigating a diagnosis.
While finding resources in these communities is invaluable, the survey also revealed some potential drawbacks of online engagement. Two prevalent concerns were the overwhelming volume of information available and doubts about the reliability of the information shared in these spaces. I've definitely come across my fair share of posts that have left me with more questions than answers. As I always heard growing up, 'You can't believe everything you read online.' This isn't to say that someone else's experience isn't valid, but it's just that – someone else's experience. Having access to information is crucial, but the survey highlights a need for moderated, evidence-based online resources specifically tailored to young breast cancer survivors.
Despite my initial reluctance about online communities, I'm so glad I found a space I can trust through YSC. It's been a place where I've felt truly supported and empowered, from fun monthly virtual hangouts and always-bustling Facebook groups, to in-person conferences where I've been able to connect with hundreds of other young survivors. I've found a community that not only supports me but also allows me to give back and support others through my work here.
As we continue to reshape the narrative for young breast cancer survivors, I'm excited to see how the Project 528 data will help guide future support systems. Writing these four blogs has given me the opportunity to reflect on my own journey and how far I've come. It's been a privilege to share my story, and I hope that through these posts, more young survivors will feel encouraged to find their own voice and community and realize they are not alone.
All opinions are my own and don't represent the Young Survival Coalition (YSC)'s Project 528.
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