Liz's Bladder Cancer Story: Misdiagnosed at the Emergency Room

The Editorial Team at BladderCancer.net is highlighting people in the bladder cancer community. We talked to Liz who shares how she was diagnosed with bladder cancer.

Liz's bladder cancer story

At around age 38, I gradually began experiencing urinary issues – urgency, increased frequency, nocturnal accidents and bladder spasms.

I presented to a local emergency room several times as I was without insurance at the time and I did not have an established PCP to go to. I was brushed off with very little testing as “Oh, you just have a UTI or bladder infection. Here’s some meds. Come back if it doesn’t go away.”

Being treated like a drug-seeking junky

When I questioned this because I had no test results that suggested any kind of infection AND I was already returning to the ED, I was treated like I was a drug-seeking suburban housewife junky instead of someone with something actually wrong with them.

I explained that I did not want drugs, I wanted someone to figure out what was wrong with me. I would even settle for a referral to a urologist because I had no clue where to go.

Still nothing.

Reaching my breaking point

When I presented to the ED the final time before diagnosis, I was 40 and they, yet again, were going to discharge me home with meds and no referral. The physician who saw me insinuated that I didn’t know my urethra from my vagina and actually asked me if I was sure the blood clots that I said I was urinating was not associated with my menstrual cycle.

When I told him that at 40, I knew what hole they were coming out of and that if he had blood clots coming through his urethra, he would know it. He laughed at me, said he was going to check lab results and I never saw him again. He sent a Physician’s Assistant in to discharge me home with drugs again and, again, with no referral.

I was thoroughly exhausted and at the end of my rope. I burst into tears.

I needed to know what was wrong with me

The tears shocked the PA and she did not know quite how to respond other than my reaction was not normal. I told her that I’d been there before and I was already coming back.

No, I didn’t want drugs. I couldn’t sleep through the night. I was not able to focus. I was constantly running to the bathroom and it was not my job to figure out what was wrong with me, it was theirs and if they couldn’t do it, they should refer me to someone who could figure it out.

She stared at me in disbelief and asked, “You’ve been here before for this.”
“Yes. It has never gone away with medication and it has progressively gotten worse.”

She went back to my chart. Gave me referrals to 3 urologists and told me to go with whomever could get me in first. I had an appointment the next day.

I did not fit the demographic of bladder cancer

About a week and a half later, I had a cystoscopy and by the end of that week, the pathology results confirmed that I had bladder cancer.

I soon learned that because I did not fit the “bladder cancer stereotype”-old, chain-smoking, white male who works with heavy chemicals- that they had not considered the disease for my diagnosis.

I knew then that I’d have to be very open about my journey, share my story, advocate and speak out as much as possible about what I experienced.