What were your initial bladder cancer symptoms?

Blood in urine.

78 year old woman here. During the pandemic I had UTI symptoms (frequent peeing, pain, urgency) but they resolved so I canceled my urology visit. When they returned, my highly regarded ob/gyn started treating me for UTIs and I listened to her rather than seeing a urologist. Eventually trace blood showed up in my urine, but she still treated for UTIs, giving me special diets. I blame myself for listening to her. When I finally saw a urologist and had a TURBT and then saw an oncologist, they recommended bladder removal. Thankfully, it was noninvasive and I'm doing fine. But still can't believe how dumb the ob/gyn and I were.

At the time (2021) I was 52 years old. Had previously had a complete hysterectomy so definitely no reason I would have blood in the urine. Got in with PCP ASAP because I had also been having frequency. She put me on a strong antibiotic, but also sent my urine off for cytology. She personally called me 2 days later and told me to get to a Urologist ASAP and quit taking the antibiotics. That I did not have a UTI. It took about a month before getting an appointment. Then it was more waiting for the results to come back from them sending samples off. My PCP knew my 30+ year smoking history so,,, I was 3.5 years into my quit at that time. I didn't let the cancer turn me around Praise God. I recently celebrated my 8 year quit date y'all, and am cancer free 4.5 years. Will have my 5 year cysto in November. After that time they will put me on annual cytology in lieu of cystoscopies, YAY 🎉 I also went thru 3 years of BCG treatments. I believe my tumor was caught early, and treated fairly quickly after 2 surgeries with BCG. Hope this helps.

Dear @annedallas , first and foremost. I am happy to hear that you are doing well now. Your story is more common than you think regarding misdiagnosis. I sometimes attend the women support group sponsored by BCAN and have heard similar stories many, many times. Frightening how many women were told all kinds of crazy things sometimes for years before their cancer was properly diagnosed. Mine started with unusual frequency for me, I found myself waking up to go to the bathroom ONCE a night as I’m sure anyone will realize is not an unusual event for women in their 60s. When I had a blood clot in my urine two months later, I went to urgent care they suspected a UTI and put me on antibiotics when the culture came back negative and they told me to finish the antibiotics anyway and were very fuzzy about what was next. I was too scared and that made no sense to me so I made an appointment with the first urologist I could get into praying for kidney stones, even though I didn’t have any pain. It is frightening how many times I’ve heard similar stories to yours and the level of education beyond the urology oncology community. We of course, can all help spread the word. Bladder cancer might not be the most common form of this dreaded disease but its common enough, and we can help educate others that blood in your urine is never normal. Best regards and thank you for sharing.😊

At 79, I started having significant amounts of blood in urine and was initially diagnosed with an UTI. Antibiotics stopped the hematuria but it returned 24 hours after ending the course of antibiotics. Urologist performed a TURBT for a single high grade NMIBC. I am now 81 and had a total of 12 BCG treatments, stopping only because of significant side effects ( reactive arthritis). Now on periodic cystoscopy.