Qualitative Analysis of the Experience of Oral Tongue Cancer Survivors

Objective: Patient experience of oral tongue cancer and life as a survivor is poorly understood and not well described in the literature. This qualitative analysis of interviews with oral malignancy survivors aims to: 1) Describe the common experiences of patients, and 2) Identify surprising findings previously under-recognized in this patient population. Method: Oral tongue cancer survivors from a single surgical practice at a tertiary-care center participated in open-ended interviews discussing their experience. The interviews were transcribed and analyzed using constant comparative technique. Open and axial coding identified common themes that are discussed in this descriptive analysis. Results: Sixteen patients, aged 30 to 80 years with stage II to IV disease, participated; all but one patient underwent surgery as primary treatment. Interviews were conducted 3 months to 12 years after treatment. Patients described variable levels of physical pain throughout their experience, but particularly during radiotherapy, when it was severe. Patients’ emotional distress was most pronounced at the time of diagnosis; few described sustained emotional distress. Concerns about altered speech, taste, swallowing, and dry mouth persisted, while changed appearance and social isolation were rarely reported. Interestingly, the majority of patients focused on pervasive dry mouth sensation, regardless of radiotherapy treatment. Conclusion: Our findings describe significant variation in physical and emotional pain during disease diagnosis and treatment, with persistent concerns regarding disrupted speech, taste, and swallowing function. Troubling dry mouth sensation is pervasive, independent of adjuvant radiation treatment. Further research should focus more specifically on these experiences and their causal relationships.