AYA Cancer Awareness: Addressing Biological Distinctiveness, Survivorship, and the Whole-Person Approach

Adolescent and Young Adult (AYA) Cancer Awareness Week, observed the week of April 6, serves as a critical reminder that patients diagnosed under the age of 40 represent a distinct population with unique biological, psychological, and social needs. In this interview, Editorial Board members Dr. Jasmin Hundal, a Hematology/Oncology Fellow at the Cleveland Clinic, and Megan-Claire Chase, a 10-year invasive lobular breast cancer survivor and advocate, discuss the evolving landscape of AYA oncology and the systemic changes required to better serve this growing demographic.

The Rising Incidence and Biological Uniqueness of AYA Cancers

A striking shift in oncology is the rising incidence of cancer among younger adults, a group traditionally considered at low risk due to the historical view of cancer as a disease of aging. Dr. Hundal noted that AYA patients often present with more aggressive disease that behaves differently than the same cancer types in older populations.

"We also know that younger-onset patients may behave differently with the same treatment," Dr. Hundal explained. "Some of them unfortunately don't respond to our traditional treatment, have a more aggressive disease, or demonstrate more aggressive type of mutations and more resistance." This biological distinctiveness necessitates a move toward precision medicine and molecular testing to "unravel the biology of these cancers" and identify targeted interventions specifically for younger patients.

The Invisible Burden: Survivorship and Accelerated Aging

For many AYA survivors, the end of active treatment marks the beginning of a new, often unsupported, phase of care. Megan-Claire Chase highlighted the "rapid aging" that occurs both internally and externally due to toxic treatments. "We don't even know what normal aging feels like because of those toxic side effects; many of us are in pain on the daily," she shared.

A significant gap exists in addressing the long-term consequences of treatment, including PTSD, grief, and sexual health. Ms. Chase noted that while patients feel "held" during active treatment, they are often left without a roadmap for survivorship. Dr. Hundal agreed, noting that sexual health and the effects of surgical menopause are frequently overlooked in the clinic. "Our patients who are hormone-positive have been experiencing accelerated aging and menopausal symptoms. I think that is something that we are lacking at understanding, to be honest," she admitted, calling for more non-hormonal management tools and pharmaceutical research.

Communication and the "Quarterback" Role of the Physician

Effective care for AYA patients requires a shift in the physician-patient relationship. Ms. Chase emphasized the need for specialists to learn the "art of communication," including recognizing non-verbal cues and removing the shame associated with discussing sensitive topics like sex drive or infertility.

Dr. Hundal expressed hope that emerging technologies, such as AI-assisted notetaking, will allow physicians to spend less time on paperwork and more time establishing relationships. "We can establish more of a relationship with our patients and understand those nuances, having more time to talk to our patients rather than doing paperwork," she said. She views the physician’s role as a "quarterback" who coordinates a multidisciplinary team—including social workers, occupational health specialists, and fertility experts—to address the "facade" of issues behind the disease.

Socioeconomic Barriers and Advocacy

The AYA experience is further complicated by life-stage challenges. Patients are often in college, starting careers, or raising young families. Dr. Hundal identified workplace accommodations and medical expenses as major gaps in the current system. "A lot of patients end up quitting their jobs and losing their insurances," she noted, stressing the need for lawful regulations that support AYA patients in maintaining their livelihoods during and after treatment.

Furthermore, both speakers called for increased genetic testing and representation for people of color. Dr. Hundal, who is South Asian, pointed out that genetic databases often lack sufficient information for non-Caucasian populations, leading to ambiguous results. "There’s clearly something there. We just don’t have enough information to figure out what that is," Chase recalled her genetic counselor saying when reviewing her family tree, highlighting the fear that comes with such uncertainty.

A Call for Whole-Person Care

The future of AYA oncology lies in treating the patient as a "whole person" rather than a collection of symptoms. By integrating precision medicine with robust survivorship plans and multidisciplinary support, the medical community can move toward a model that preserves not just life itself but also quality of life.

Key Takeaways

• AYA cancers are biologically distinct: Younger patients often exhibit more aggressive mutations and earlier treatment resistance, requiring a precision medicine approach.

• Survivorship is a lifelong phase: Care must extend beyond the "cure" to address chronic pain, PTSD, sexual health, and the effects of accelerated aging.

• Multidisciplinary "quarterbacking" is essential: Physicians should coordinate with social work, occupational health, and fertility specialists to address the socioeconomic and life-stage impacts of cancer.

• Communication must be intentional: Clinicians should use symptom-focused dialogue and be mindful of non-verbal cues to build trust and reduce patient shame.

• Advocacy for systemic change is needed: Addressing gaps in insurance, workplace accommodations, and genetic database diversity is critical for equitable AYA care.

About the Speakers

Jasmin Hundal, MD, MS, MPH, is a third-year Hematology/Oncology Fellow at the Cleveland Clinic in Cleveland, Ohio. Previously, she completed her Internal Medicine Residency at the University of Connecticut. Dr. Hundal’s main area of interest is the overlap between cardiometabolic health and cancer, particularly for breast cancer patients and survivors. Outside of work, she enjoys traveling, cooking, and hiking.

Megan-Claire Chase is a patient advocate and the Breast Cancer Program Director for SHARE Cancer Support. As a 10-year survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved in patient advocacy work after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times, in People Magazine, and on PBS’s “Beyond Cancer” episode of “Stories from the Stage.” Her story and work are documented in her blog “Life on the Cancer Train.”