The Drag and Delay to a Bladder Cancer Diagnosis

From weeks to months to years, each bladder cancer diagnosis is unique. It feels like a long slog, regardless of the length of time.

Curious about the process in this community, we asked the Facebook group, "How long did it take for you to be diagnosed with bladder cancer?"

We also posted a poll on the site to gauge time ranges. There were 80 comments on the Facebook post and 278 responses to the poll. Shorter times to diagnosis reflect proactive doctors. Longer times reflect dismissive doctors.

0 to 3 months

Many of you were fortunate with a quick diagnosis. Around two-thirds (66 percent) of you were diagnosed within 3 months.

When you had blood in your urine, doctors ordered tests. If a presumed urinary tract infection (UTI) did not clear up, doctors looked further. Within a short time, you had an accurate diagnosis and treatment plan.

The earlier that treatment begins, the better chance of a positive outcome. You are grateful for the doctors who listened and ordered tests.

"2 months. The doctor thought it was a UTI."

"Very quick. My doctor referred me to a urologist. I had a cystoscopy by my second appointment with her, and the diagnosis was confirmed. TURBT procedure followed the next week."

"First day. I went in with blood in the urine."

"It went fairly quickly for me. I was diagnosed a month after the first hint of blood in the urine."

"I had blood in my urine on November 1, 2019. I saw a urologist on November 3 and had my first cystectomy on November 4. Diagnosed November 5 with a cancerous tumor."

"Within a week of my first symptom of blood and clots in my urine, I was undergoing my first TURBT."

Up to 1 year

For a little over 21 percent of you, it took up to a year to get your diagnosis. Doctors were not immediately concerned with UTIs that did not clear up. The bleeding did not appear serious. As you followed up, doctors did not dismiss the impact of these symptoms. They began to look and order tests, leading to a bladder cancer diagnosis.

"About 6 to 8 months of bleeding."

"UTI diagnosis for about a year."

Over 1 year

Sadly, many of you had your symptoms ignored for years. Around 12 percent of you went over a year, 5 percent more than 3 years, without an accurate diagnosis. Doctors were dismissive, attributing symptoms to things like:

• UTIs
• Kidney stones
• Menopause

They did not listen to your concerns about how symptoms affected your life. Instead of an early diagnosis, your cancer advanced. You feel angry about the time you lost feeling miserable while the cancer grew.

"For close to 15 years I complained to many doctors and was always told UTI."

"I suffered UTIs for years and was diagnosed with these right up to bladder cancer diagnosis."

"I woke up one morning to go to work, and I couldn't move. I saw a physician assistant for 2 years for what she thought was my kidney. Finally, I sought out another doctor and got my diagnosis."

"My husband had blood in his urine for 3 years, which his doctor attributed to kidney stones."

"3 years. I was told it was just menopause. I was spotting and thought it was gynecological. I saw the doctor 4 times in 18 months when she told me to 'suck it up, buttercup.' I went another 1.5 years in horrible pain until I was peeing pure blood. They thought it was stones - found the cancer through a CAT scan."

"3 years. No one believed me when I got so sick."

Sharing your bladder cancer diagnosis experience

We appreciate everyone who shared their journey to diagnosis. The many roads to confirming bladder cancer are affirming for those who share a story similar to yours.

Did you experience a delay in bladder cancer diagnosis? Tell us about it in the comments below, or share your story with the community.