Social Challenges of Cancer Patients With Orbitofacial Disfigurement

Abstract

Patients who undergo orbital exenteration often experience social problems because of their facial disfigurement. The authors studied the interaction of cancer patients who had undergone orbital exenteration with family members and friends (primary groups) and with acquaintances and strangers (secondary groups) in small and large groups. In-depth telephone interviews were conducted with 12 patients treated at a cancer center (7 men and 5 women aged 51-81 years) and 12 family members (8 spouses and 4 children or siblings). Three patients had adenoid cystic carcinoma of lacrimal gland, 3 had squamous cell carcinoma of conjunctiva/eyelid, and 1 each had conjunctival melanoma, eyelid sebaceous gland carcinoma, transitional cell carcinoma of lacrimal sac, adenocarcinoma of orbit, neuroendocrine carcinoma of orbit, and basal cell carcinoma of eyelid. Time from orbital exenteration to interview ranged from 8 months to 36 years (median, 44 months). Two patient groups were identified according to comfort in interactions with acquaintances and strangers. Always comfortable patients were always at ease. Occasionally comfortable patients were at ease in large groups in situations of "benign neglect" and in small groups when they received "sympathy"; were uncomfortable in large and small groups when episodes of "intrusion" occurred; and had mixed responses to benign neglect in small groups and sympathy in large groups. Both patient groups felt comfortable with family members and friends. Patients who will undergo orbital exenteration should be warned about possible difficulties with social interactions. Healthcare personnel should be trained to help patients and family members prepare for such difficulties.