“Hurtled down a track and then thrown off”: experiences of longitudinal breast cancer care trajectories of women living with and beyond breast cancer

BACKGROUND: Despite established guidelines, women with breast cancer often experience complex care pathways. This study explored the lived experiences of treatment and service utilisation pathways for women living with and beyond breast cancer in Australia. We mapped real-world treatment journeys against optimal care pathway guidelines to identify specific gaps and improvement opportunities for healthcare delivery. METHODS: Women at least two years post initial diagnosis participated in semi-structured focus groups organised by cancer typology: non-metastatic, de novo metastatic, recurrent non-metastatic, and recurrent metastatic. Participants (n = 32) described their complete cancer care trajectories, including treatments received and services accessed. Framework analysis identified distinct care phases, compared experiences to guideline recommendations, and revealed nuanced experiences. RESULTS: Analysis revealed five critical phases in breast cancer care: initial diagnosis and treatment planning, initial treatment, post-treatment care management and recovery, managing recurrent and progressive disease, and end-of-life care. Within these phases, 13 sub-phases showed consistent gaps between guidelines and patient experiences. Key challenges included poor care coordination and access, delayed diagnoses and navigation challenges in metastatic cases, poor tolerance of ongoing systemic therapy, and unmet end-of-life planning needs. CONCLUSIONS: This study reveals complex longitudinal pathways in breast cancer care and highlights the distinct challenges women face at different phases. Findings demonstrate differences across non-metastatic and metastatic patients, and between primary and recurrent cases. Many participants experienced fragmented care, despite established guidelines. Continuity gaps across care phases suggest survivors may benefit from more tailored phase-specific support services. To improve care delivery, healthcare providers should develop targeted resources for each care phase, implement structured care transition protocols, and create specialised support programs that address the unique challenges within different survivor groups. These findings provide specific targets for healthcare systems to enhance cancer care continuity and reduce fragmentation in real-world practice.