What immediately comes to mind when you read that word? Close your eyes for a second and let the image(s) flow in your mind.
While I can’t hear your response in person, I expect that a 16-year-old about to start their sophomore year in high school, a 27-year-old newlywed, or a 35-year-old closing on their first home was probably not what came to mind. Cancer doesn’t discriminate when it comes to things like race, gender, or age, yet when it comes to adolescents and young adults, this group is seldom mentioned when it comes to discussions around cancer.
The reality is that 89,500 adolescents and young adults (AYAs) ages 15-39 are diagnosed with cancer in the United States each year. And while research within this age group is increasing, with age-specific support becoming more prevalent now more than ever, AYAs continue to be under-represented, underserved, and under-resourced compared to both their older and younger counterparts.
AYAs face an array of challenges, unique to their stage in life, that further complicates the cancer journey. Among the many challenges AYAs report includes:
- Delayed diagnosis that is disproportionately higher than in any other age group.
- Higher rates of bankruptcy and more frequently going without much-needed medical care due to cost.
- Financial distress is exacerbated by nonmedical costs, such as student loans and childcare.
- Concerns and questions about fertility preservation and reproductive health
- Even in survivorship, report poorer health outcomes including higher rates of obesity, anxiety, depression, and heart disease.
- To make matters worse, many AYAs face these challenges on their own and the global pandemic has only further exacerbated these challenges as well as further highlighted disparities in care.
Just a couple of decades ago, AYA cancer programs did not exist and often patients were treated as pediatric patients or older adults, failing to acknowledge the unique life state of AYAs. Enter us at Stupid Cancer. We work towards ending isolation and building community for those affected by AYA cancer. With our online and in-person programs, we provide education and tools to help AYAs through their treatment and survivorship.
Such programs include our Stupid Cancer Stories, where we give our community a platform to share their experiences and connect with their peers through the power of storytelling - both in person at our Open Mic events and by submitting to our Story Library. We also host meetups, not to be confused with support groups, as these are meant to provide a space for AYAs to have fun while connecting with their peers without fear of stigma or awkward questions. Though should anyone have any larger, more serious questions we have them covered with our Discussions Series, a 4- 6 week long series of topic-based sessions that allow participants to engage in sustained, meaningful conversation with each other in a structured setting, led by trained professionals.
And through our signature event CancerCon, which is the largest gathering of the AYA community, we bring together patients, survivors, caregivers, and professionals for a weekend of education and connection. This year we will be hosting Digital CancerCon this April 16 -30 and CancerCon Live (in-person) will be in Atlanta for the first time on August 17 -20!
In the years since its founding, through the aforementioned innovative, award-winning, and evidence-based programs and services, Stupid Cancer has become the leader in the adolescent and young adult cancer space. In fact, the landscape for AYA cancer has changed dramatically over the last decade, in large part due to the work of Stupid Cancer. Although there are more resources for AYAs than ever before, the isolation of AYA cancer patients persists.
Looking ahead, Stupid Cancer envisions a world where everyone in the AYA community is supported, understood, and accepted. And you can help! Give us a follow on social media and help us spread the word about AYAs and our mission to make cancer suck less for them. Want to make an even bigger impact? Consider donating on our website here.
About the Author
Marlena Matute is the Communications & Development Coordinator at Stupid Cancer.
Stupid Cancer helps to empower everyone affected by adolescent and young adult (AYA, age 15- 39) cancer by ending isolation and building community. Visit their website to learn more about their initiatives, and programs and how you can lend your support to their mission.