Advocate Angle: Representing the Unrepresented: Addressing the Invisibility Phenomenon of Adolescent Young Adults (AYA) in Cancer Research

12/16/2025

Written by Katie Keyser, NRG Oncology Patient Advocate Committee member

When I was 24 years old, I was newly married, finishing my last semester of college, and planning my honeymoon. I had a steady job and a bright future ahead. Then I found a lump in my breast.

At first, I dismissed it. My doctor told me it was “probably too much caffeine”. But something didn’t feel right. I pushed for more testing, and eventually, after advocating for myself multiple times, I was diagnosed with invasive ductal carcinoma. The radiologist told me I was the youngest person he had ever diagnosed with breast cancer. In that moment, my life, and my understanding of cancer, changed forever.

In the weeks that followed, I kept asking myself: Would things have gone differently if someone had believed me sooner? That question has stayed with me, both as a survivor and as someone who now works in oncology research.

Despite the growing number of adolescent and young adult (AYA) patients diagnosed with cancer, this population remains one of the most underrepresented in oncology clinical trials. Prior research suggests that, approximately six times as many AYA individuals are diagnosed with cancer compared with younger patients, yet only 2% of AYA patients enroll in clinical trials, compared to 60–75% of younger patients (Siembida, 2021). Representation gaps extend further, for example, while Black patients account for approximately 11% of all cancer diagnoses annually, these individuals make up only 3% of clinical trial enrollees (Siembida, 2021).

This imbalance reflects more than statistics and mirrors the “invisibility phenomenon” that many young adults experience when facing cancer. Society often portrays cancer as a disease that affects either the very young or the very old. The reality is that cancer does not discriminate by age, and for AYAs, the experience comes with distinct physical, emotional, and social challenges.

AYA patients often find themselves at a crossroads by navigating treatment while building careers, relationships, and families. They grapple with fertility concerns, disruptions to education or employment, and the isolating experience of not fitting neatly into pediatric or adult oncology care models. Studies show that AYA patients with cancer face unique psychosocial burdens, including heightened distress, social isolation, and financial strain (Zebrack et al., 2023). Importantly, incorporating patient-reported outcomes (PROs) into clinical workflows can help identify these unmet needs and support more person-centered care (Zebrack et al., 2023). Facilitating and leading PRO research in my current role has helped me to appreciate the opportunity to have conversations with patients and ask questions that they may not be getting asked by their care teams. I deeply value PRO research because I often realize that these are the conversations or questions that I wished people would have asked me when I was in the trenches of cancer.

The disparities surrounding the under-representation of unique challenges experienced by AYA patients with cancer extend beyond care to outcomes. Research indicates that AYA patients experience worse survival rates than both pediatric and older adult patients with similar cancers, and this difference is multifactorial. Contributing factors include delayed diagnosis, differences in tumor biology, treatment protocol uncertainty, and limited access to or recruitment into clinical trials (Bleyer et al., 2018). Delayed diagnosis, as in my own case, can increase disease burden and make patients less likely to meet strict eligibility criteria for research participation.

When I was diagnosed, I had no one in my life who looked like me or had gone through something similar. I felt invisible. It wasn’t until I connected with others through survivorship programs and found therapy that I began to rebuild myself, and to channel that pain into purpose.

Today, I have the privilege of working with investigators to design studies that prioritize equity, health literacy, and inclusion. My passion for this work is rooted in the belief that every patient deserves to be seen, heard, and represented, and in particular those who have historically fallen through the cracks.

As members of the oncology community, we must continue to challenge the structures that perpetuate underrepresentation. We need to design and advocate for trials that reflect the diversity of our patients, not just by age, but other important factors, such as race, gender, and socioeconomic status. Furthermore, we need to ensure that AYA patients are not just an afterthought in research, but a focal point for innovation and change.

I am alive today because of research. My hope is that, through continued advocacy and inclusive trial design, future AYA patients won’t have to fight to be believed, or to be seen.

References

• Siembida, E. J. (2021). Research reveals barriers to clinical trial participation. Oncology Practice Management.
• Bleyer, A., et al. (2018). Adolescent and young adult oncology: The rationale, the progress, and the promise of the National Cancer Institute and American Society of Clinical Oncology initiative. Journal of Clinical Oncology, 36(21), 2136–2143.
• Zebrack, B., et al. (2023). Addressing the psychosocial and practical needs of adolescents and young adults with cancer. JCO Oncology Practice, 19(3), 167–174.

About the Author

Katie Keyser, BS, joined the NRG Oncology Patient Advocate Committee in 2025, bringing with her a deep commitment to advancing health equity and improving patient engagement in cancer care. A breast cancer survivor diagnosed in 2018, Katie draws on both her personal experience and professional background to advocate for greater health literacy and the removal of barriers to clinical trial participation.

She currently works in Oklahoma City, where her work centers on patient-reported outcomes and their correlation with clinical results. Katie is also a patient advocate on the Route 66 Endometrial SPORE grant and serves on the Board of Directors for the cancer nonprofit Tenaciously Teal. A passionate public speaker and dedicated ally, Katie is inspired by NRG’s mission and looks forward to contributing to research that reflects the diverse needs of patients. (Also, she’s one of the biggest OKC Thunder fans—Go Thunder!)