A Patient Journey Map for Lower Limb Lymphedema after Gynecologic Malignancy Surgery: A Qualitative Study

Abstract Background Lower limb lymphedema (LLL) is a common and disabling long-term sequela of gynecologic cancer surgery, but the post-treatment experiences of affected women are poorly mapped. This study aimed to map the post-treatment journey of women with LLL and to identify their care tasks, emotional experiences, and unmet needs from preoperative counseling through long-term survivorship. Methods A qualitative descriptive study informed by the Systems Engineering Initiative for Patient Safety (SEIPS) 3.0 model. Fifteen women with LLL after surgery for endometrial (n = 8) or cervical (n = 7) cancer were recruited from a tertiary hospital in Fuzhou, China. Semi-structured interviews followed a five-stage journey framework, and data were analyzed using directed content analysis. Results The interviews followed five journey stages (preoperative awareness, postoperative monitoring, healthcare-seeking, treatment adaptation, and long-term coexistence), grouped for analysis into three phases (pre-diagnosis, diagnosis and treatment, and long-term coexistence); within each phase, three cross-cutting dimensions were examined: management tasks, emotional trajectories, and pain points. None of the participants recalled receiving preoperative lymphedema education; early symptoms were misattributed to chemotherapy or thrombosis, and time from symptom onset to diagnosis ranged from 3 months to 6 years. Treatment imposed heavy time and financial burdens. In the long term, women reported role conflict, social withdrawal, and persistent anxiety about progression. An exploratory cross-cutting observation, tentatively termed the “survivor optimism paradox,” emerged across narratives: minimizing symptoms because cancer had been survived appeared to undermine self-management at all stages. Conclusions Survivors accumulate cognitive gaps, diagnostic system barriers, and broken long-term support. The journey map identifies stage-matched targets for care—structured preoperative education, standardized referral pathways, and planned long-term follow-up—which should be embedded in routine women’s health services rather than delivered as reactive treatment; such provision could shorten diagnostic delay and help women sustain self-management alongside family responsibilities.