Women and bladder cancer

One in four bladder cancer patients are women, yet their stories often go unheard. Women face numerous challenges throughout their entire care journey. Alarmingly, their symptoms are frequently attributed to other causes, resulting in delayed referral to a specialist and a delayed definitive bladder cancer diagnosis.

Further down this page, you can learn more about the “5 Women, 5 Experiences” project. It highlights the very personal experiences of five women from five countries across the world to bring much-needed awareness and attention whilst building a sense of community for women affected by bladder cancer through what can be an isolating experience.

Bladder cancer patient support and advocacy groups provide a community where women can find information, guidance and support. Peer support is a big part of patient groups, where women who received a bladder cancer diagnosis can speak to other women who have been through a similar experience or undergone the same treatment pathway.

The first Global Bladder Cancer Patient and Carer Survey carried out by the World Bladder Cancer Patient Coalition offered insight into women’s experience with bladder cancer, their care and support needs. The ‘5 Women, 5 Experiences’ campaign provides an example of these realities through personal lived experiences.

Facing a bladder cancer diagnosis

Women, particularly those under 55, encounter significant obstacles in getting a bladder cancer diagnosis, often necessitating several doctor visits before being referred to a urologist. The survey showed that 39% of women are initially incorrectly diagnosed, most often with a urinary tract infection, leading to delays in receiving an accurate diagnosis.

The Global Bladder Cancer Patient & Carer Experience Survey highlighted that 31% of women felt their symptoms were not taken seriously during initial doctor visits. Furthermore, women are more likely to be diagnosed with another condition first, with 69% experiencing this issue, and are twice as likely to be misdiagnosed with a UTI compared to men. Recognising and promptly reporting symptoms, especially the most common sign of blood in the urine—which might be visibly red, dark brown, or only detectable under a microscope—is crucial. A substantial portion of patients also experience symptoms like burning during urination or frequent urges to urinate, underscoring the importance of early consultation, preferably with a urologist.

In some instances, women may delay seeking help for symptoms like blood in the urine, mistaking it for menstruation or menopause. Such delays, coupled with initial misdiagnosis can significantly impact the time to a correct bladder cancer diagnosis.

 

Sharing 5 unique stories of women with bladder cancer

Through these personal stories of lived experiences, we aim to shed light on the unique challenges women affected by bladder cancer face, whose stories often remain unheard. They share their stories to inspire others, create a community, advocate for better healthcare outcomes, and support women with bladder cancer around the world.

Together, we are advocating for increased awareness and action on issues women encounter when faced with a bladder cancer diagnosis and fostering a world where every woman’s health journey is acknowledged and supported.

The first video of the five-part series  features Claudia. An inspiring 46-year-old mother from Rome, Italy, first received a diagnosis of upper tract urothelial cancer, which later developed into urothelial carcinoma, or bladder cancer. During the bladder removal surgery, a new bladder, often called a neobladder, was created from the small intestine to collect the urine inside the body and allow it to exit through the urethra.

The second video in our five-part series, “5 Women, 5 Experiences” , introduces the inspiring positivity of Ana María. Aged 79 and living in Buenos Aires, Argentina, Ana María shares her bladder cancer journey. Diagnosed with bladder cancer in 2022, her cancer experience was not her first one, as she overcame breast cancer a few decades before. Ana María is part of a new research study, or clinical trial, investigating new treatment options for muscle-invasive bladder cancer. Her story offers a unique perspective on bladder cancer diagnosis and participation in a clinical trial.

In the third video of the series “5 Women, 5 Experiences,” we meet Angela, a 42-year-old from Niverville, Canada who shares her journey with bladder cancer. Diagnosed in 2020 after her symptoms were initially mistaken for a UTI, Angela’s bladder cancer journey included multiple TURBTs and BCG treatments, progressing to muscle-invasive cancer. Following chemotherapy and a radical cystectomy, Angela now embraces life with her urostomy bag, ‘Peeatrice,’ symbolising her strength and resilience.

In the fourth video of the series “5 Women, 5 Experiences,” we meet Vivian, a 50-year-old from Johannesburg, South Africa who shares her journey with bladder cancer. Vivian’s journey began in 2018 with a cervical cancer diagnosis, leading to surgery and being declared cancer-free. Two years later, following tests for severe abdominal pain, she was diagnosed with bladder cancer. Her doctors recommended a course of chemotherapy, which she bravely began in September 2023, enduring the side effects and emotional toll of battling cancer once again.