"No such thing as good cancer": a qualitative exploration of the experience of early-onset thyroid cancer in survivors

Abstract

Background: The incidence of thyroid cancer has increased exponentially in recent decades. At the same time, there is a growing concern surrounding the overdiagnosis of indolent thyroid cancer, leading to invasive and potentially unnecessary interventions that can significantly impact young patients' lives. Yet, the experiences of survivors of thyroid cancer have been largely understudied. The purpose of this study was to explore the experiences of survivors of early-onset thyroid cancer.

Methods: The qualitative research design of hermeneutic phenomenology guided this study. Participants completed a demographic survey and semi-structured interview that was subsequently transcribed verbatim and analyzed using reflexive thematic analysis.

Results: Thirty-six survivors of thyroid cancer (83% female, median age at diagnosis: 37.1 years, median age at interview: 43.5 years) participated. Participants' experiences were characterized by two themes: (1) reconciling the meaning of the "c" word (cancer) as a dangerous and life-threatening diagnosis with lived experience of thyroid cancer and (2) thyroid cancer leaves patients with lifelong physical and emotional scars.

Conclusions: Survivors of early-onset thyroid cancer experience significant short and late effects on their physical and psychosocial well-being. Survivors shared some of the difficulties of having to reconcile what they were told was a "good cancer" and their previously held beliefs of cancer, including feeling lost in the healthcare system and like they could not access services or be impacted because they had been told they had "good cancer." Increased communication of risks and acknowledgement of the perceptions surrounding cancer is needed to help patients make better informed decisions and feel supported throughout their thyroid cancer journey. Gaps in care pathways, especially adjustments post-treatment, should be filled to help support these survivors.

Keywords: Adolescent; Clinical research; General; Psychiatry; Quality of life; Thyroid cancer; Young adults.