Adolescents and young adults (AYA), defined as individuals aged 15–39, represent a unique and rapidly expanding oncology population. Their developmental stage, marked by identity formation, educational advancement, career building, and family planning, intersects sharply with the life-altering reality of a cancer diagnosis. At Moffitt Cancer Center, AYA new patient volumes have increased by 9.5% over the last three fiscal years, underscoring the need for age-appropriate, psychosocially informed, and patient-centered care. While AYA patients are seen across many disease sites, the outpatient Sarcoma Clinic, where I practice as an oncology social worker, has a high concentration of AYA patients due to the epidemiology of sarcoma diagnoses. This environment provides a critical vantage point for understanding the reproductive, emotional, and survivorship concerns that shape AYA cancer care.
The Importance of Oncofertility in AYA Care
One of the most significant yet inconsistently addressed issues for AYA patients is fertility preservation and reproductive health education. The field of oncofertility, pioneered by Dr. Teresa Woodruff, bridges oncology and reproductive medicine to ensure that patients receiving gonadotoxic therapies are informed of their risks and offered fertility preservation options. Despite its importance, fertility counseling remains unevenly implemented across oncology settings, often due to time constraints, provider discomfort, or assumptions about patient priorities.
Chemotherapy, radiation, and certain surgeries can impair reproductive function, making timely fertility discussions essential, ideally before treatment begins. Preservation options include sperm banking for males and oocyte or embryo cryopreservation for females, with emerging techniques such as ovarian tissue cryopreservation offering additional possibilities. Yet financial barriers remain substantial, with sperm banking typically costing $500–$1,000 and egg or embryo preservation ranging from $8,000–$15,000 or more.
Patient Vignettes: The Human Impact of Missed and Successful Fertility Counseling
The consequences of missed fertility conversations are profound and often lifelong. One 33-year-old female treated for acute myeloid leukemia later learned she had never been informed of fertility risks before chemotherapy. Overwhelmed by the urgency of treatment, she assumed all essential information had been shared. In survivorship, she discovered her ovarian reserve had been severely diminished, describing the grief as “delayed but devastating” when she and her partner began discussing parenthood. Her experience reflects a common reality among AYA survivors who were not offered fertility preservation or even told their fertility was at risk.
In contrast, a 26-year-old male with Ewing sarcoma was promptly referred for sperm banking. Years later, he returned with photos of his newborn son, conceived using preserved sperm. He expressed gratitude not only for the medical intervention but for the nurse who explained the process and validated that fertility preservation mattered, even though he was young, already had children, and was unsure about future family plans.
A third patient, a 34-year-old mother of two, initially hesitated due to cost and guilt, questioning whether she “deserved” to preserve fertility. Through counseling, she recognized that reproductive autonomy is not dependent on relationship status or societal expectations. She ultimately chose to freeze embryos, later sharing that the decision gave her a sense of control during an otherwise chaotic time.
Together, these stories underscore a central truth: fertility preservation must be a patient’s choice. It should never be assumed that a patient is uninterested because they are single, already have children, feel uncertain about future parenthood, or face financial or cultural barriers. Autonomy requires access, and access requires consistent, proactive education.
Expanding Access Through Community Partnerships
In recent years, several community organizations have emerged to reduce financial barriers and expand access to fertility preservation. These partnerships have transformed what was once inaccessible for many AYA patients into a viable option, particularly for female patients who face higher preservation costs. For additional program and support options, please refer to this community resource list.
The Role of Oncology Social Workers
Oncology social workers are uniquely positioned to bridge gaps in fertility education, reduce barriers to access and care, and ensure reproductive autonomy is upheld. We can normalize fertility discussions as a routine part of AYA cancer care, advocate for standardized fertility screening protocols, and provide developmentally appropriate education about risks and options. Through psychosocial assessment, counseling, and care coordination, we can address emotional responses, including grief, fear, or ambivalence, and support patients in making values-aligned decisions. We can also connect patients with financial assistance programs and community resources. All of this is possible while collaborating with our multidisciplinary teams.
Conclusion
As AYA patient volumes continue to rise nationally, the oncology community must prioritize reproductive autonomy as a core component of comprehensive cancer care. Patient stories, both those marked by loss and those marked by empowerment, underscore the urgency of integrating oncofertility into routine practice. By elevating awareness, strengthening institutional processes, and partnering with community organizations, oncology social workers can safeguard the futures of AYA cancer survivors and ensure that every patient has the opportunity to make informed, values-driven decisions about their reproductive health.
References
Alliance for Fertility Preservation. (2025). How much does fertility preservation cost? Retrieved from https://www.allianceforfertilitypreservation.org/expenses/cost-of-treatment/
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Dorfman, C. S., Stalls, J. M., Mills, C., Voelkel, S., Thompson, M. Acharya, K. S., Baker, K. C., … Corbett, C. (2021). Fertility preservation for cancer patients: The role of oncofertility patient navigation. Journal of Oncology Navigation & Survivorship. 12(10), 332-348, doi 10.5114/wo.2022.120362.
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Oktay, K., Turan, V., Bedoschi, G., Pacheco, F., & Moy, F. (2024). Fertility preservation before cancer treatment. The Lancet Oncology, 25, 235–247.
Quinn, G. P., Vadaparampil, S. T., King, L., Mireles, L., Wilson, C., & Clayton, H. (2015). Impact of a patient navigator on fertility preservation counseling and outcomes. Journal of Adolescent and Young Adult Oncology, 4(3), 118–125.
Smith, A. W., Seibel, N. L., Lewis, D. R., et al. (2020). Outcomes for adolescents and young adults with cancer. Journal of the National Cancer Institute, 112(5), 1–15.
Woodruff, T. K. (2010). The Oncofertility Consortium. Journal of Adolescent and Young Adult Oncology, 1(2), 121–123.
