How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience

Abstract

Several organizations—including the American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM)—have developed guidelines for physicians and cancer care centers so they may more effectively educate patients regarding cancer-related fertility impairment as well as available treatment options. Despite this, studies of both cancer patients and oncologists reveal an information gap where many patients are not being informed of potential impairment or what can be done. Moreover, there is a lack of understanding of how these discussions between patients and oncologists unfold, what information is discussed, and what factors shape these conversations. Our aim in this chapter is to describe our efforts to gain a nuanced understanding of how women of reproductive age with cancer learn about the potential threats to their fertility and available fertility preservation options. Drawing on interviews with women diagnosed with breast cancer prior to 40 years of age, we identify five trajectories of experience among the respondents in our sample. These trajectories differentiate across respondents by whether or not the topic was discussed with their oncologist, who initiated the topic (patient or oncologist), and whether or not fertility preservation treatment options were discussed. We also examine barriers/facilitators to the exchange of this information, including patient knowledge and empowerment and an oncologist’s network with fertility specialists. We suggest future research directions and considerations for best-practice guidelines, including greater examination of the networks between oncologists and fertility specialists, determinants of patient empowerment, and potential sources of inequality in the exchange of fertility-related information.