Meri-Margaret Deoudes highlights BCAN’s New Faces of Bladder Cancer survey

In the following interview, conducted at the 2026 ASCO Genitourinary Cancers Symposium, Meri-Margaret Deoudes, CEO of the Bladder Cancer Advocacy Network (BCAN), discusses findings from the organization’s New Faces of Bladder Cancer survey, offering a comprehensive look at the modern patient journey from diagnosis through survivorship.¹

The survey was launched in part to mark BCAN’s 20th anniversary, but also to address a critical gap in understanding the lived experiences of patients with bladder cancer. While clinical advancements and outcomes are well documented, Deoudes emphasized that less attention has been paid to how patients perceive and navigate their care. The initiative aimed to capture a more holistic view of the journey, from initial symptoms and diagnosis through treatment and long-term survivorship.

To achieve this, BCAN gathered responses from a geographically and clinically diverse population, with participants representing 49 states and Puerto Rico and spanning the full spectrum of disease, from non–muscle invasive to metastatic bladder cancer. Although the survey population largely reflected the typical demographic profile of the disease—predominantly older White men—it also included women and a growing number of younger patients in their 50s. The survey explored a wide range of topics, including treatment decision-making, surveillance burden, financial toxicity, and mental health challenges, underscoring the multifaceted nature of the patient experience.

Findings from the survey reflect the evolving landscape of bladder cancer care over the past 2 decades. Deoudes noted that the rapid expansion of therapeutic options, particularly in recent years, has created more opportunities for personalized treatment but has also introduced new complexities for patients navigating the health care system. As a result, the data highlight an increasing need for support systems that help patients understand their options and align treatment decisions with their personal values, reinforcing the importance of shared decision-making and truly patient-centered care.

REFERENCE

1. Bladder Cancer Patients Report Delayed Diagnosis and Gaps in Support. Bladder Cancer Advocacy Network. March 9, 2026. Accessed March 27, 2026. https://bcan.org/bladder-cancer-patients-report-delayed-diagnosis-and-gaps-in-support/