“Everything I Had, I Lost”: Survivors’ Lived Experiences of Late Radiotherapy Side Effects After Head and Neck Cancer Treatment: A Qualitative Study

BACKGROUND: Patients with new functional changes years post-treatment for head and neck cancer (HNC) do not always access specialist support until symptoms are severe. OBJECTIVE: To explore the impact of late effects on patients' lives and their perceptions of emerging symptoms, with a focus on identifying factors that influence when patients seek assistance. METHODS: Patients with late effects of HNC treatment completed >5 years previously were eligible to participate in semistructured interviews. Interpretative Phenomenological Analysis was used as a framework to explore the lived experiences of participants. RESULTS: Ten participants were interviewed, and 4 group experiential themes were generated around onset, nature, and impact of symptoms; the role of family and friends in support and symptom appraisal; grief and loss; and accepting and adapting. CONCLUSIONS: Late effects have a profound impact. Patients are often resilient, possibly to the detriment of seeking help in a timely fashion. Significant others are vital to supporting adaptations and symptom appraisal. IMPLICATIONS FOR PRACTICE: Education of patients, their significant others and local healthcare providers about late effects of HNC is much needed. Education should focus on symptom recognition, the importance of early intervention and available support options. Streamlined pathways which are easy to navigate for patients and providers, and evidence-based interventions, using a biopsychosocial approach, need to be embedded into cancer planning strategies.