Ronald’s Story: “Trust your gut.”

During a routine bathroom visit, the sight of very dark urine followed by pure red prompted urgent calls to the urologist and primary care doctor. Confirmatory tests, including X-rays and a cystoscopy, swiftly revealed the truth: a bladder tumor. At that moment, the line between the familiar and the unknown blurred, plunging him into a whirlwind of uncertainty. Here is Ronald’s story:

It started back in July of 2020. I went to the bathroom before bed and my urine was brown. It looked like coffee grounds. Then the next time when I got up and urinated, it was just pure red. I called my urologist the next morning and called my primary care doctor. My primary care had me come in right away and they did a urine sample, and of course, there was blood in it. Then, I went to the urologist who also looked and ordered a series of X-rays, and then did a cystoscopy. At that point, he said, “You have a tumor.” When he told my wife that, my wife said, “Well, you have cancer.” I said, “No, that’s not cancer, that’s a tumor.” I didn’t know.

The urologist did a TURBT but he did not get enough material to tell if it was a muscle invasive or not. So he scheduled me for another TURBT. In the meantime, I called the Moffitt Cancer Center, and I made an appointment with them. At Moffitt, my doctor there performed a third TURBT and found that my bladder cancer was not muscle invasive, so I was grateful for that.

At that point, I went forward with a course of 15 BCG treatments. It was going fine until treatment 14, which I had a hard time keeping in. I couldn’t keep it in for the full two hours. I went home, and then later that afternoon, I couldn’t urinate at all, so I had to go back to the hospital, and around 2:00 or 3:00 in the morning, they decided to do a Foley catheter. I was released and waited two weeks before I went back for my next BCG treatment, and the same thing happened again. Due to that, we decided on no more BCG. Ever since that, I’ve had a problem with painful and frequent urination.

I went to two urologists at the University of South Florida. The first one tried a couple of prescriptions, but they didn’t work. I went back and the nurse said, “I need to have you go see Dr. Heinsimer at USF Urology Department,” and I did. His first option was to remove my bladder and that was my last option. He said option two would be to do Botox. He said, “You’re probably going to have to catheterize yourself at that point.” That didn’t sound too pleasant to me. The third option was to do a tacrolimus where they instill it into your bladder once a week for six weeks. According to him, that had a 50% chance of success. So I went with the third option, which was in August of 2023.

After it was done, the doctor did a cystoscopy, and the inside of my bladder was very red and inflamed. It was really bad. Then I had a regularly scheduled cystoscopy at Moffitt, and my urologist there looked, and it was still very inflamed. In December of 2023, one night I went to the bathroom, and I was passing blood clots. I called Moffitt and my doctor there saw me within less than a week. She did a cystoscopy, and the inside of my bladder is now a lot better, but the part where it leads to the urethra is still inflamed. That is the section where they took the tumor from. That’s what is so badly inflamed and right now nobody knows how to fix it.

My cancer has never returned. At first, I was having a cystoscopy every three months, and then about a year ago, Dr. Yu at Moffitt said it could only be done once every six months. She has been excellent. She’s tried a lot of different things.

So far, she said everything looks good. I had a spot on my lung, which they said was not related, but they did a PET scan, and at that point, they also saw a spot on one of my kidneys, which she did a uro CAT scan for. It came back and said it had grown about half a centimeter in the last three years. So she’s not concerned with that at all. Right now, I’m just really frustrated with not being able to get rid of the pain and the frequent urination because I don’t get good rest since I have to be up all night long every 45 minutes to an hour.

Right now, I’m continuing to do more research about other places I can visit. Of course, that was one reason why I reached out to the BCAN because I had read some patient stories earlier on when I first got diagnosed, and I thought, “Well, I need to share my story with somebody.” One of my cousins was actually diagnosed with non-muscle invasive bladder cancer about two or three months after me, and he only lived for a year and a half. It just kept spreading. They did BCG and everything, but there was no stopping it.

BCAN gave me an idea of who I could reach out to, especially those who have dealt with the same issue that I have. I thought if I reach out to another person or another group, maybe we can come up with a plan.

A piece of advice I would give to those newly diagnosed is to trust your gut. I should have listened to my body more during the BCG treatments because I think if I had stopped at treatment number 12, I wouldn’t have the issues that I have now. I noticed from treatments 13, 14, and 15, each one gave me a lot more trouble. I’m just thinking that if I would’ve said, “No, I’m stopping now, maybe I wouldn’t be in the shape I’m in now.”