Salley’s Story: I Thought I Had Repeated UTIs. It Was Stage 2 Bladder Cancer

In 2021, I thought I was dealing with a frustrating string of urinary tract infections.

Looking back, I can see the warning signs. At the time, I didn’t.

Over the course of seven or eight months, I had four or five UTIs. Every time symptoms appeared, I went to an urgent care clinic, got treated, and moved on. I was so busy. I never imagined those recurring infections could be a sign of something much more serious.

I Thought I Was Just Getting Repeated UTIs

It wasn’t until my fifth UTI that someone finally suggested I see a urologist.

If I had found a lump in my breast, I would have gone to the right doctor immediately. Women have heard that message for years. But nobody had ever told me that repeated urinary tract infections could be a warning sign of something more serious. I don’t know that I had ever even heard about bladder cancer.

At the time, I simply assumed I was prone to UTIs.

The Day Everything Changed

One night in September 2021, I woke up needing to use the bathroom.

Nothing happened. I couldn’t urinate.

I went back to bed feeling uncomfortable, hoping it would resolve on its own. The next morning, I still couldn’t urinate. That’s when all the warning lights started flashing.

My husband and I went to the emergency room.

The doctors inserted a catheter and all of this blood and just really awful looking stuff started coming out. The emergency room physician told me there was a mass inside my bladder. Whether it was benign or cancerous, he couldn’t say, but he knew I needed to see a urologist right away.

“You’ve Got Stage 2 Muscle-Invasive Bladder Cancer”

After additional testing and a biopsy, I received the diagnosis:

Stage 2 muscle-invasive bladder cancer.

I remember sitting in the urologist’s office with my husband as the doctor explained that the tumor board had reviewed my case and recommended removing my bladder.

My world blew up.

I am an educated person, but I honestly don’t remember ever hearing much about bladder cancer. Suddenly I was facing a diagnosis I knew almost nothing about, and doctors were telling me I needed major surgery.

I was overwhelmed.

Like many patients, I became a deer in the headlights.

Trusting My Medical Team

Before surgery, I underwent chemotherapy to treat the cancer and reduce the risk that it might spread. They had me do 12 rounds of chemo before my radical cystectomy, the operation to take my bladder out.

At the time, I didn’t do much research. Looking back, I probably should have asked more questions, but I was terrified and trying to process a life-changing diagnosis.

When doctors tell you that you have cancer, your first instinct is simple: get it out.

My medical team felt strongly that removing my bladder offered me the best chance for survival. Years later, I asked my urologist what might have happened if we had tried to preserve my bladder.

His answer was blunt.

“You’d be dead.”

That conversation reinforced my belief that, for me, radical cystectomy was the right decision.

Learning to Live Without My Bladder

I recall that at one point, there was discussion about a neobladder, but my surgeon down at the Medical University of South Carolina (MUSC) said, “Salley, you’re not going to like that. It’s going to give you a lot of problems. And I really feel like an ileal conduit is the best route for you.” My urologist, as well as my surgeons, said, “You’re young enough, you’re strong enough to live a good life with a pouch.”

At the time, I was worried about what life would look like afterward. I had two non-negotiables: I wanted to swim and I wanted to ride horses.

I told my surgeon exactly that. He assured me I would be able to do both.

The Hardest Part Was Coming Home

I won’t sugarcoat it. Recovery was hard.

I spent seven nights in the hospital after surgery. Because I live nearly three hours from Charleston, my husband and I rented a beach house near the hospital after I was discharged. It turned out to be one of the smartest decisions we made.

The pouch I had been fitted with wasn’t working properly. It leaked constantly.

I felt frustrated, exhausted, and completely unprepared for what life with a urostomy would involve. Everything changed when I met an ostomy nurse named Julie. I adore her.

She looked at me and looked at my pouch and said, “Well, this is all wrong.” She set me on the course of being able to manage the situation. Looking back, she was one of the most important people in my recovery.

Finding My Way Forward

I was determined not to let cancer define the rest of my life. I told myself, “You’re going to be okay. You know, it’s not great. It’s not how you’d choose to live. There are going to be some repercussions, but you’ll manage.”

Slowly, I started doing the things I loved again.

I went swimming.

I got back on a horse.

I learned that while life would never be exactly the same, it could still be full, active, and meaningful.

Turning My Experience into Art

As I recovered, I found another way to process what had happened to me.

The way that I tell stories is through writing and art. When I did the first work of art, I didn’t know what I was really starting.

And a fellow artist came over to my studio, and she looked at it and she said, “Oh my God, she said, you’re on to something here. You need to continue this.”

What began as a single piece of art eventually grew into an entire series exploring my experience with bladder cancer, surgery, survivorship and life with a urostomy.

The project helped me understand my own story in a deeper way.

The exhibit has since been displayed publicly, and I hope it continues to travel and reach new audiences so that other people can learn from it.

What I Would Tell Someone Newly Diagnosed

If I could sit down with the woman I was in 2021, I would tell her one thing above all else:

Don’t panic. Do your research. Ask questions.

Most importantly, know that you can get through this.

Bladder cancer is not easy. Losing your bladder is not easy. Recovery is not easy.

But four years later, I’m still here. I’m swimming. I’m riding horses. I’m creating art.

And I’m okay.

Resources

Women and Bladder Cancer