Community Views: Did Your Bladder Cancer Diagnosis Surprise You?

For many people with bladder cancer, the path to diagnosis and treatment does not always follow a straight line. Many people have signs and symptoms that signal something is wrong, though they may not suspect bladder cancer.

A surprise bladder cancer diagnosis

In our 2020 Bladder Cancer In America Survey, we asked respondents to tell us about their diagnosis journey. Nearly 600 people with bladder cancer completed the survey and shared details about their experiences.

Following the survey, we turned to community members on the BladderCancer.net Facebook page and asked them to tell us: "Did your bladder diagnosis come as a surprise to you? Why or why not?"

Symptoms are often attributed to something else

"I was totally shocked. I thought I had kidney stones or irritation from interstitial cystitis."

"Yes, because 2 doctors had just said that my UTIs were caused by my diabetes and old age."

"I thought I had the flu!"

"Yes, I went in for back pain."

"Yes, a complete shock even though I had blood in my urine. I never gave bladder cancer a second thought."

Mistaken identity

Early signs of bladder cancer are often mistaken for something else or dismissed. However, survey results show that 80 percent of respondents experienced symptoms before their diagnosis. These symptoms are what prompted them to go to a doctor, which led to additional testing. The most common symptoms include:

• Blood in urine (hematuria)
• Abdominal pain
• Difficulty urinating
• Frequent urination
• Painful urination
• Recurrent UTIs

Unintentionally diagnosed

"I'm 47 and they found it doing kidney stone removal. I guess as bad as kidney stones are, I'm lucky I had them."

"I was in the emergency room. They performed a CT scan for my gallbladder, and they found the mass in my bladder."

Another 19 percent of respondents shared that they unintentionally discovered their diagnosis. Some found out during a routine medical exam. Others found out while under the care of a doctor for another health condition or during surgery not related to cancer.

Many quickly see a doctor

"I saw a doctor as soon as possible. I knew something was wrong."

Many respondents knew their symptoms were a sign of a health issue and quickly sought out care. According to respondents, the length of time between when their symptoms began and when they had their first doctor appointment include:

• Less than 2 weeks – 47 percent
• 2 weeks up to 4 weeks – 20 percent
• 1 month up to 3 months – 15 percent
• 3 months up to 6 months – 7 percent
• 6 months or more – 11 percent

Timely access to care and seriousness

Most respondents who did not quickly see their doctor thought their symptoms were not serious enough to immediately seek out care. Timely access to care was another issue for a number of respondents. Reasons for respondents delaying seeing their doctor after symptoms began include:

• 45 percent felt symptoms were not that bad/downplayed symptoms
• 23 said it took time to get an appointment
• 9 were scared to see a doctor
• 9 percent had inconvenience/time issues
• 6 percent had financial/cost/insurance issues

Other reasons included things like misdiagnosis, denial, and attributing symptoms to something else.

Starting treatment shortly after diagnosis

"My husband goes in for his radical cystectomy tomorrow afternoon. The surgeon will then create a stoma for his ostomy bag. He's nervous and scared. But thank you for posting... There's life with an ostomy."

"I have now been through chemo and surgery for radical hysterectomy and removal of my bladder. It was quite a shock!"

"My husband was diagnosed with stage 2, high-grade, muscle-invasive bladder cancer back in April this year. He's having his bladder, prostate, and lymph nodes removed tomorrow."

"I'm scheduled for a TURBT with mitomycin wash."

Even though most people need some time to adjust to the shock of their diagnosis, doctors often recommend that most start treatment as quickly as possible.

According to respondents, the time between diagnosis and starting on treatment or surgery include:

• Within a month – 60 percent
• 1 to 3 months – 32 percent
• 3 to 6 months – 5 percent
• 6 months to 1 year – 2 percent
• 1 to 2 years – 1 percent

The 2020 Bladder Cancer In America survey was held online from January through May 2020. The survey was completed by 589 people.

Stronger together

A surprise bladder cancer diagnosis can be overwhelming and scary. We appreciate everyone sharing their experience and story with us - the bladder cancer community is stronger with you as a part of it. Tell us about your experience in the comments below, or share your story with the community.