1 May 2023 .Brussels , Belgium

Press Release: More than half of people with bladder cancer are misdiagnosed with another disease

• Over half (57%) of bladder cancer patients were first diagnosed with another condition
• More than a third (39%) of women with bladder cancer are initially misdiagnosed with Urinary Tract Infections (UTIs)
• Almost one-fifth (18%) of women with bladder cancer symptoms have to visit their GP five times or more before being referred to a specialist

According to a new global survey of bladder cancer patients, more than half (57%) of people with bladder cancer are initially diagnosed with another condition.

The most common condition patients are misdiagnosed with is a urinary tract infection (28%), potentially delaying the onset of treatment by months.

It was more common for females to be diagnosed with another condition first (69%), especially a UTI (39%). Females were twice as likely to be misdiagnosed with a UTI (39%) compared to males (21%).

These results come from a survey commissioned by the World Bladder Cancer Patient Coalition (WBCPC), a global organisation which supports people with bladder cancer.

Around 75% of bladder cancer patients are men and 25% women – but delays in diagnosis and treatment often mean women have worse outcomes.

The survey also revealed that one in five (20%) bladder cancer patients surveyed felt their symptoms were not taken seriously when they first visited a doctor – this was higher for females (31%), advanced/metastatic cancers (31%), and younger respondents (under 55) (33%).

The study showed that most patients visited their doctor once (52%) or twice (23%) before being told they needed to see a specialist about bladder cancer.

However, 10% of bladder cancer patients visited a doctor five or more times before being referred to a specialist. It was most common for young respondents (under 55 (16%)), females (18%), and metastatic/advanced patients (21%) to visit their doctor five or more times before being referred to a specialist.

The responses collected from 1,198 people from 45 countries also showed that while most respondents visited their doctor immediately or within a month after noticing signs and symptoms of bladder cancer, nearly a third (32%) waited longer than a month.

Delays in visiting a doctor about signs and symptoms were due to:

• Thinking the signs and symptoms were caused by something else (36%)
• Thinking the signs and symptoms were not serious (34%)
• Waiting to see if the signs and symptoms would go away on their own (28%)

This data comes as the WBCPC launched its campaign to raise awareness of bladder cancer symptoms and urge people who see blood in their urine to get checked for the disease.

The ‘Look Again’ campaign aims to highlight that the symptoms of bladder cancer can be confused with those of other diseases such as UTIs, cystitis, kidney/bladder stones, and gynaecological problems – potentially delaying diagnosis.

WBCPC worked with the graphic designer, illustrator, and artist Noma Bar to create the ‘Unsure Icon’ using imagery concerning blood in your urine, the shape of the human bladder, the feeling of pain when urinating, the passing of time, self-examination and consultation. The Unsure Icon was designed to be seen in different ways, just like the symptoms of bladder cancer – opening up conversations to aid diagnosis.

Whilst bladder cancer is the 10th most common form of cancerii, it is often forgotten, and the symptoms are not well understood. One of the main barriers to diagnosis of bladder cancer is that symptoms are overlooked or mistaken for non-threatening urinary conditions. However, if diagnosed early, there can be a 90 per cent survival rate1. Other symptoms include frequent urination or pain when urinating, abdominal lower back and pelvic pain, repeated urinary tract infection, incontinence, tiredness and weight loss.

Every year, over 570,000 people are diagnosed with bladder cancer and 1.7m live with the condition worldwide. Bladder cancer mainly occurs in older people, with about 9 out of 10 people with the disease over 55. Overall, the prevalence of bladder cancer is three quarters men and one quarter women.

Common bladder cancer symptoms include:
– Blood or blood clots in the urine
– Pain or burning sensation during urination
– Frequent urination
– Feeling the need to urinate many times throughout the night
– Feeling the need to urinate, but not being able to pass urine
– Lower back pain on one side of the body

Dr Lydia Makaroff, President of the WBCPC, said:

“The study shows that bladder cancer is sometimes confused with other illnesses by doctors, and patients may not notice initial symptoms.

“People who have symptoms of bladder cancer need to be taken seriously and get a quick and correct diagnosis.

“It can be dangerous when bladder cancer is not found and treated soon enough. We need to fix this problem to save lives.”

Alex Filicevas, Executive Director of the WBCPC, said:

“Today sees the start of a global campaign designed to raise greater awareness of bladder cancer symptoms.

“The WBCPC campaign aims to get people talking about bladder cancer and drive them to participate in World Bladder Cancer Awareness Month in May 2023.

“This year our campaign deliberately highlights the misrepresentation of symptoms and encourages people to re-evaluate – because what they think they saw the first time round may, in fact be something else entirely.

“We want to urge anyone feeling unsure about whether their symptoms might be a sign of bladder cancer to see a doctor and get checked.”

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