It was just mind blowing to be honest: a qualitative phenomenological study exploring cancer survivor’s experiences of indocyanine green lymphography used to inform lymphedema therapy management

Purpose A diagnosis of secondary lymphedema following cancer treatment can necessitate lifelong therapy. Indocyanine green (ICG) lymphography is a technique for visualising lymphatics to enable individualised lymphedema diagnosis, staging and therapy prescription. The participant experience of undergoing the procedure and the impact of imaging findings on lymphedema management is unknown. This study aimed to explore participant’s experiences of ICG lymphography to inform cancer-related lymphedema therapy. Methods A qualitative phenomenological study was conducted using semi-structured interviews with 17 adult participants who had undergone ICG lymphography for stage 0 to 2 upper or lower limb secondary cancer-related lymphedema (International Society of Lymphology, Lymphology 53(1):3–10, 2020 ). Results Seventeen participants were included in the study ranging in age from 36 to 78 years (M = 53.8 years), the majority had a primary diagnosis of breast cancer (N = 7) or melanoma (N = 7). Three overarching themes emerged. Firstly, describing the experience of the ICG lymphography procedure . Secondly, the new knowledge explained symptoms and tailored treatment. Participants reflected on how seeing their lymphatic system helped in understanding about their lymphedema symptoms and guided changes towards more individualised lymphedema management. The final theme described the internal impact of self-knowledge, which included impacts of the new information on empowerment and motivation to self-manage participant’s condition as well as their feelings. Conclusions ICG lymphography had beneficial impacts on participant’s understanding of their lymphedema symptoms and often led to changes in management, positive outcomes in response to management changes and peace of mind about management plans, leading to feeling more empowered to self-manage their condition.