When Treatment Shapes Life: Insights from the Bladder Burden Survey

Bladder cancer is more than a clinical diagnosis. For the people living with it, it is years of treatment, repeated check-ups and a quiet emotional weight that shapes everyday life in ways rarely captured in the clinic.

On May 14, our Executive Director, Alex Filicevas, joined a panel discussion at in Washington, D.C., held ahead ofthe American Urological Association (AUA) Annual Meeting 2026. The panel brought patient advocates, clinicians and researchers together to discuss findings from a new global survey on how current standard-of-care treatments for non-muscle-invasive bladder cancer (NMIBC) affect patients’ daily lives, their emotional wellbeing and the decisions they make about their care.

Alex spoke to three themes that come up repeatedly in conversations with patients around the world: the emotional weight of treatment, the burden patients carry in silence, and what meaningful shared decision-making really looks like.

Emotional impact beyond the clinic

Bladder cancer treatment affects far more than physical health. Patients often describe lasting changes to their confidence, body image, relationships, intimacy and sense of self. These conversations are rarely part of routine care.

For patients who undergo radical cystectomy (surgery to remove the bladder), the impact can be life-changing. For those living with NMIBC and receiving Bacillus Calmette-Guérin (BCG) treatment, the burden is ongoing. It is shaped by repeated treatment cycles, regular check-ups and constant uncertainty about the future.

Key findings discussed during the session:

• More than 9 in 10 patientssaid treatment caused them to miss important life moments.
• 1 in 3 patientsreported avoiding leaving their home, seeing family, or going out in public because of treatment.

The discussion also pointed to the need to normalise conversations about body image, intimacy, emotional wellbeing, and what ‘living well’ looks like for each individual patient.

The burden patients carry quietly

The second theme focused on the emotional impact many patients feel unable to talk about openly. Alex explained that this burden is often hidden, not because patients do not feel it, but because they do not feel invited or supported to share it.

Patients often carry anxiety, fear of recurrence, uncertainty and exhaustion in silence, while continuing to appear positive for their families and clinical teams. For some, this disconnect begins at diagnosis itself, when bladder cancer is described to them as a ‘good cancer’. The framing is intended to reassure, but many patients feel it minimises everything that follows.

Findings discussed during the session:

• About 3 in 4 patients (74%)said they hide the emotional impact of their disease, including 1 in 3 who always or often conceal how they feel.
• 2 in 3 patientssaid their urologist made them believe their cancer was a ‘good cancer’ at diagnosis, a framing many feel minimises the real impact it has on their lives.

The panel also explored the role peer support and patient organisations play in helping patients feel less isolated and more understood throughout their journey.

What meaningful shared decision-making really looks like

The final part of the discussion focused on shared decision-making and what patients need in order to feel genuinely involved in their care.

Alex emphasised that meaningful shared decision-making is more than simply presenting treatment options. Patients want clear information, time to think, honest conversations about quality of life, and support that reflects their personal priorities and values. Many patients defer to their urologist out of trust, but still want a clearer understanding of all the options available to them, so that care can align with their lives and goals.

Data shared during the panel:

• 9 in 10 patientssaid they wished their urologist had helped them better understand all available treatment options.
• Nearly all patients and urologistsexpressed interest in new treatment approaches, particularly those that preserve the bladder or avoid or delay bladder removal.

Patients want to be treated as people, not just diagnoses. Across every healthcare system, they continue to call for care that reflects their emotional wellbeing, quality of life and personal goals throughout the bladder cancer journey.

Supporting patients through every step

To support patients, carers and families through every stage of the bladder cancer journey, we develop accessible factsheets covering signs and symptoms, treatments and care decisions in clear, patient-friendly language. Through the BCLEAR project, our joint EU-funded initiative with the European Association of Urology and partners across Europe, we are also working to strengthen bladder cancer literacy and shared decision-making, so that no person faces bladder cancer without the knowledge, resources and support they need.

About the survey

The findings discussed during the panel come from a new global survey conducted by The Harris Poll, in collaboration with the World Bladder Cancer Patient Coalition (WBCPC), the International Bladder Cancer Group (IBCG), the Bladder Cancer Advocacy Network (BCAN) and Johnson & Johnson. It gathered the views of 817 patients living with non-muscle-invasive bladder cancer (NMIBC) and 802 urologists across six countries: the United States, Mexico, Brazil, Japan, Germany and France.

Read the full survey findings here and explore our resources for patients, survivors and carers.