Living in limbo: Being diagnosed with oral tongue cancer

OBJECTIVE: Oral tongue cancer presents clinical challenges to effective diagnosis that affect patient experience. Patient experience of the diagnostic process is poorly described, making opportunities for nursing intervention unclear. METHODS: We qualitatively describe, using constant comparative analysis, oral tongue cancer diagnosis using data from a larger grounded theory study of oral tongue cancer survivorship. Using constant comparative analysis — in keeping with the methodology of the main study — we analyzed 16 survivor interviews for themes explaining the patient experience of oral tongue cancer diagnosis. RESULTS: We termed the broader diagnostic process “living in limbo.” This process includes the themes describing the peri-diagnostic process itself — “self-detected lesion,” “lack of concern,” “seeking help,” “not a straightforward diagnosis,” and “hearing the diagnosis.” Entry into treatment concludes “Living in Limbo” and is described by the theme “worry and trust.” CONCLUSIONS: Our findings are limited by retrospective interviews and participant homogeneity among other features. Future research with prospective designs and diverse groups of people at risk for and diagnosed with oral tongue cancer, as well as targeting those who have had negative biopsies with no eventual diagnosis of oral tongue cancer, will build on our findings. Further, study of patient experience in other sociocultural context and healthcare systems is needed to inform nursing science and practice. Finally, “living in limbo” suggests that clinician and public education about oral tongue cancer diagnosis is needed.