Understanding BCG treatment: new patient factsheet available

We are pleased to launch a new factsheet titled “Understanding BCG treatment for bladder cancer”, the third in our series of patient factsheets. This resource is designed to help people affected by bladder cancer, together with their carers, understand Bacillus Calmette-Guérin (BCG), one of the most widely used treatments for non-muscle-invasive bladder cancer (NMIBC).

The factsheet is developed as a decision-aid tool to help people newly diagnosed with bladder cancer have an informed conversation with their treating doctor or nurse. We encourage healthcare professionals to download this resource and use it as a supplementary tool when speaking with patients and their families.

The factsheet is intended for use with the advice of your healthcare professionals. It does not support any particular course of treatment over another, and its use as a decision-aid tool is voluntary.

For many people, the period after surgery is when the most pressing questions arise. BCG is placed directly into the bladder, where it works as a local immunotherapy, prompting the body’s own immune system to recognise and attack cancer cells. For people with high-grade NMIBC and carcinoma in situ (CIS), it can lower the risk that cancer will return or grow deeper into the bladder wall, helping many keep their bladder rather than needing more aggressive treatment.

The factsheet follows the full treatment journey, from preparation through to long-term follow-up, so that those affected can feel more confident at each step. Key topics include:

• What BCG is and how it works: an accessible explanation of BCG as a local immunotherapy, and how it differs from intravesical chemotherapy.
• Before, during and after treatment: what to expect at each session, including the induction and maintenance phases, and the safety and hygiene precautions to follow at home.
• Possible side effects: common, short-lived effects such as a burning sensation, increased frequency and fatigue, alongside clear guidance on the symptoms that should prompt urgent contact with a clinician.
• Who is eligible and why: the factors a doctor weighs when recommending BCG, including tumour grade, size, number and recurrence history.
• If BCG does not work: the options that may follow, from additional therapies and clinical trials to surgery in selected cases.
• Follow-up and long-term care: why regular cystoscopy and urine testing remain important even after treatment is complete.

To support patients in practice, the factsheet also includes a list of questions to ask your healthcare team and a printable treatment and cystoscopy schedule log, which patients can bring to every appointment to help track their therapy together with their clinician.

Bladder cancer awareness remains low, and many people hear about the disease for the first time at diagnosis. Clear, reliable information about treatments such as BCG can help patients and their families take a more active role in decisions about their care. This factsheet, like others in the series, is intended as a shared starting point for those conversations.

We invite you to download, use and share this factsheet within your community, whether online or offline. This easy-to-print resource can be used by clinicians on demand, or in advance, as a supportive decision-aid tool when speaking with people newly diagnosed with bladder cancer.

For more information, we encourage you to explore the earlier factsheets in the series, “Understanding Bladder Cancer” and “Understanding TURBT”. Many more of our factsheets and resources are available in a range of languages on our resources page.

For questions or suggestions, please contact us at info@worldbladdercancer.org

The World Bladder Cancer Patient Coalition gratefully acknowledges the support of our Global Impact Partner, Johnson & Johnson, and our Premier Partners, Astellas and Ferring Pharmaceuticals. This factsheet has been reviewed for accuracy by the World Bladder Cancer Patient Coalition Scientific Advisory Board (SAB).