Mapping the Long Road After Breast Cancer: Review Identifies 180 Healthcare Event Types and Seven Phases of Care

For millions of women who finish the initial whirlwind of breast cancer diagnosis and treatment, the medical journey is far from over. Yet the long tail of care that follows—surveillance scans, follow-up appointments, late-onset side effect management, and, for some, the devastating detection of recurrence—has remained surprisingly poorly charted in the research literature. Now, a comprehensive scoping review led by Shantelle J. Smith of Curtin University’s School of Population Health, published in BMC Cancer, has produced one of the most detailed maps to date of what actually happens to women’s healthcare after initial breast cancer treatment ends, cataloguing a striking 180 distinct types of healthcare events and organizing them into seven discrete phases of the cancer care trajectory.

The research team, which also included Rachael Moorin, Jade C. Newton, and Chloe Maxwell-Smith, set out to answer a deceptively simple question: what kinds of healthcare events do women with primary and recurrent breast cancer experience after their first round of diagnosis and treatment? To find out, they followed the Joanna Briggs Institute methodology for scoping reviews, conducting an exhaustive search of bibliographic databases and grey literature for studies published since January 2014 that described post-initial treatment healthcare events in women with invasive female breast cancer. The screening and assessment process was carried out using the Research Screener and Covidence platforms, and the resulting data were analysed narratively, with the team charting the healthcare event types reported across studies and the phases of care they represent.

The scale of the synthesis is impressive. From 158 included studies, the researchers identified 180 unique healthcare event types, which they grouped into five broad categories: diagnostics, follow-ups, treatments, supportive care, and other treatments and services. This taxonomy matters because it transforms a fragmented literature—where each study tends to describe care in its own idiosyncratic way—into a coherent framework that researchers, clinicians, and health system planners can use to understand the full breadth of the post-treatment pathway. The categories span everything from imaging and pathology investigations to routine surveillance visits, systemic therapies, psychosocial support, and allied health services.

One finding stands out from the analysis: subsequent systemic anticancer therapies were the most frequently reported event type across the literature. This prominence reflects their central role in modern breast cancer management, where hormonal therapies, chemotherapy, and targeted agents are often continued for years after surgery and radiotherapy, both to reduce the risk of recurrence and to monitor disease progression over long-term care trajectories. For women with estrogen receptor-positive disease, in particular, endocrine therapy can stretch a decade or more beyond initial treatment, embedding the cancer care system deep into everyday life long after the acute phase has passed.

Beyond cataloguing individual events, the review made a conceptual contribution by identifying seven literature-derived phases of care that structure the post-initial treatment pathway. These are: follow-up care after treatment; extended treatments in early breast cancer follow-up; subsequent treatment in early breast cancer; subsequent treatment in metastatic breast cancer; recurrence detection and diagnosis; recurrence treatment; and end-of-life care. This phase-based framework is significant because it acknowledges that the cancer care trajectory is not a single undifferentiated stretch of survivorship but a sequence of clinically distinct periods, each with its own typical events, goals, and intensity of healthcare use.

The framework also captures the branching nature of the journey. A woman who completes treatment for early breast cancer may enter a long period of surveillance and follow-up, punctuated by extended treatments such as ongoing endocrine therapy. If the disease remains stable, she may continue in routine follow-up for years. But if metastatic disease emerges, or if a local or regional recurrence is detected, the trajectory shifts abruptly into recurrence detection and diagnosis, followed by recurrence treatment—a phase that can itself involve surgery, radiotherapy, systemic therapy, or combinations thereof. The seven phases therefore provide a vocabulary for describing how care escalates and changes character as disease status evolves.

Perhaps the most sobering finding of the review concerns the very end of that trajectory. End-of-life care was notably underrepresented in the literature: only 11 event types were reported, and they appeared in just 6 of the 158 included studies. For a phase of care that every patient with metastatic or refractory disease will eventually face, this is a stark evidence gap. The authors interpret this as reflecting broader gaps in supportive and palliative care research more generally, suggesting that the published literature systematically underrepresents the services—palliative consultations, hospice care, symptom management, and psychosocial support at the end of life—that form a critical part of the cancer care continuum.

The review’s authors are careful to note an important caveat: because of variation in how the included studies described and reported care, some event types that are common in clinical practice may be underrepresented in the literature. In other words, the map they have drawn is a map of what has been studied, not necessarily a complete map of what happens. This distinction matters for anyone using the findings to plan services or design future research. If a healthcare event does not appear in the literature, it may be because researchers have not looked for it, not because it does not occur—a subtle but consequential bias in the evidence base that this review helps to expose.

The implications of the work extend across several domains. For researchers, the taxonomy of 180 event types and seven phases offers a standardized structure for designing studies of healthcare utilization, costs, and outcomes in breast cancer survivorship, making it easier to compare findings across studies and health systems. For clinicians and policymakers, the framework illuminates the full longitudinal scope of care that women navigate, highlighting where services may need reinforcement—particularly in supportive, palliative, and end-of-life care, where the evidence is thinnest. And for patient advocates, the review provides a documented account of the many touchpoints women have with the health system after treatment, which can inform conversations about what survivors should expect and what support they may need along the way.

The study was supported by the Western Australian Future Health Research and Innovation Fund under its Research Excellence Awards program, with additional scholarship support for the lead author from Curtin University and Cancer Council WA. The team also involved consumer advocates with lived experience of breast cancer in reviewing the study protocol, an approach that grounds the research in the realities of the care journey it seeks to describe. Ultimately, the review’s central message is that the post-treatment phase of breast cancer is a long, complex, and clinically diverse journey, and that the current evidence base—rich in some areas, strikingly silent in others—does not yet adequately reflect the longitudinal care experiences of the millions of women living with and beyond the disease. Mapping the terrain, as this review has done, is the essential first step toward closing those gaps.

Subject of Research: Healthcare event types and phases of care in the post-treatment trajectory of primary and recurrent female breast cancer

Article Title: Healthcare event types in the cancer care trajectory following initial diagnosis and treatment of female primary and recurrent breast cancer: a scoping review

Article References: Smith, S. J., Moorin, R., Newton, J. C., & Maxwell-Smith, C. (2026). Healthcare event types in the cancer care trajectory following initial diagnosis and treatment of female primary and recurrent breast cancer: a scoping review. BMC Cancer. https://doi.org/10.1186/s12885-026-17077-w

Image Credits: AI Generated

DOI: 10.1186/s12885-026-17077-w

Keywords: breast cancer, cancer care trajectory, scoping review, survivorship, recurrence, follow-up care, systemic anticancer therapy, palliative care, end-of-life care, health services research, care pathways, longitudinal care