Living with bladder cancer looks different for everyone.
In this article, you’ll meet four patient advocates and one care partner impacted by bladder cancer. Their individual journeys are remarkably different, from their ages to their disease, and from their different treatment paths to their varied support systems.
About 9 out of 10 people diagnosed with bladder cancer are over age 55, with an average age of 73 at diagnosis. You’ll read some cases are unusual because the people are younger.
Regardless of age or diagnosis, what connects them is profound.
Whether newly diagnosed, making treatment decisions or navigating treatment, the behaviors these patients and their care partners have modeled—advocacy, asking questions, seeking partnership with their care team, refusing to disappear quietly—can help people impacted by a disease, no matter where they are in their journey. And these behaviors apply whether you’re dealing with bladder cancer, another form of cancer or any chronic condition that demands you show up for yourself.
Understanding bladder cancer: one disease, many forms
Like most cancers, bladder cancer has different forms, different stages and different trajectories. Some people are diagnosed with non-muscle invasive bladder cancer (NMIBC), which is cancer confined to the inner lining of the bladder. Others have muscle-invasive disease, where cancer has invaded deeper tissue layers.
Bladder cancer is the sixth most common cancer in the U.S., with 84,530 new cases estimated to be diagnosed in 2026. NMIBC accounts for 75 percent of new cases and requires constant surveillance and repeated treatments. Carcinoma in situ (CIS) is found in about 10 percent of NMIBC cases and is associated with increased risk of progression to more advanced forms of bladder cancer.
Treatment varies as well. Some people may be treated with Bacillus Calmette-Guérin (BCG) therapy, an immunotherapy that’s delivered and held directly in the bladder. For others, chemotherapy followed by surgery may be recommended.
Share your journey to help others: Mike’s story
“I was in the middle of a sentence with someone and like, ‘I’m sorry, I got to go to the bathroom.’ It would come so quickly that I just had to go,” Mike says.
His primary care physician referred him to a urologist. What followed was six months of tests, scans and waiting.
For high-risk NMIBC, the treatment path typically starts the same way: surgery to remove visible tumors, followed by BCG.
When Mike received his first BCG treatment, he came home and put on a movie, hoping to distract himself from the urge to urinate.
“I ended up actually rolling back and forth just to be comfortable and get into a different position, hoping the urge would go away,” he recalls. “I did it. I got through it.”
Mike went through six consecutive weeks of BCG treatment while working full-time. His details reveal what living with this actually looks like: One day he counted 57 steps from his desk to the nearest restroom. He started wearing untucked shirts to hide potential leakage. He tracked every bathroom visit and texted Heidi, his wife, the running count.
“Every time you go to the bathroom, you’re questioning yourself,’’ he says. “Is that worse than last time? Is there blood? Is it cancer or is it because I didn’t drink enough?”
The hardest days were managing cancer, working full days and trying to protect his three sons, especially the youngest, from the full weight of what the family was going through.
“We had to tell them at the end of the summer: look at what we came through as a family,” he says. “This was really hard on all of us. And we came through it. That’s why we are a family.”
By mid-June, Mike had surgery. Imaging showed no disease.
For Mike and Heidi, moving forward meant sharing their story on TikTok and helping people understand that bladder cancer isn’t rare – just underrecognized.
Ask questions, welcome partnership: “Brad’s” story
He was diagnosed with NMIBC with CIS.
“I thought, ‘Please, not cancer,’” he recalls. “And then it was.”
What happened next, though, wasn’t what “Brad” expected. He met a partner. A certified physician assistant who specializes in urology met him in the exam room one day ready to help him navigate what was ahead.
“She came in and was like, ‘Hey, you don’t know me. We’re going to do this thing today. Here’s what’s going to happen. What questions do you have?’” “Brad” remembers. “And from that moment on, I just felt seen.”
That feeling of being seen, having someone in your corner who listens, advocates and walks alongside you through treatment is what changed everything for “Brad.”
“Brad” went through four surgeries to remove tumors. Then came BCG.
But BCG doesn’t always work for everyone. Approximately 40% of NMIBC patients don’t respond to BCG therapy. For those patients, the conversation typically shifts to radical cystectomy, or complete surgical remove of the bladder.
“I wasn’t ready to give up my bladder,’’ “Brad” says. “I wanted to fight for it.”
A different path became available thanks to a new treatment option. His care team supported him through it and today “Brad” is managing his condition and living life the way he wants.
“There are going to be some hard times,’’ “Brad” says. “But you’ve got to fight for your life.”
Build your own support system: Liz’s story
Liz spent more than two years experiencing symptoms, such as frequent urination, pain and blood clots. Repeated ER visits. Each time, tests showed no sign of infection.
“They gave me pain meds and pushed me away,’’ she recalls.
It wasn’t until a physician assistant finally listened that she got a referral, then a cystoscopy a week and a half later, and shortly after, a diagnosis. A cystoscopy is a procedure in which a urologist uses a scope to view the inside of the bladder and urethra to diagnosis and treat urinary tract problems.
For Liz, her team determined bladder removal was the necessary path forward. Her tumor was the size of a grapefruit and had already invaded the muscle wall. Surgery was urgent.
“I was 40. I wanted to live another 40 years,” she says.
Her surgeon offered her options: a standard ostomy, a surgically created opening in the abdomen that allows stool or urine to exit the body, or a neo-bladder, a reconstructed bladder made from intestinal tissue. Liz spent a weekend researching, consulting with medical friends and thinking it through. She chose the ostomy.
As a single person without family support, advocacy was doing the research herself, connecting with medical friends she knew from previous work and finding her own team.
“I had to keep working, keep going, in order to live,” she says. “I did the best I could with what I knew.”
But here’s what Liz wants healthcare providers to know: “Listen to your patients. Not everyone fits into a checklist. Those checklists are based on male symptoms. The female urinary tract is different. Take women at their word.”
She also has advice for patients: “If you’re uncomfortable with what’s being suggested, do your own research and get second or multiple opinions. Don’t just take what the first doctor says as truth.”
For Liz, that means becoming an ostomy coach, speaking at events and telling medical professionals what she learned the hard way.
Refuse to disappear: John’s story
For John, a navy veteran and entrepreneur who’d spent seven years in service and decades building his career in the early internet space, life was full. Then came the call.
He was initially diagnosed with early-stage bladder cancer and thought he’d get BCG therapy. Then came a call from Johns Hopkins, where he’d gone for a second opinion.
“I’m pulling into my driveway,” John recalls. He heard, “High-grade. You need chemotherapy and then radical cystectomy as soon as possible.”
Everything changed in that four-minute phone call.
John completed two and a half months of chemotherapy. Then radical cystectomy. Nearly three years after surgery, John remains cancer-free. And he’s chosen to speak publicly about his experience, sharing his journey with the Bladder Cancer Advocacy Network in “John’s Story: In a matter of seconds, your entire world could shift.”
He’s particularly committed to reaching the military community. Veterans are roughly twice as likely to develop bladder cancer as the general population.
“Every year that goes by without a new diagnosis is good news,’’ he says.
For John, the weight of the cancer journey existed alongside grief associated with the loss of a loved one.
His wife was, he says without hesitation, the reason he got through it.
“You have to have support,” he says. “You have to know you’re not alone.”
Stand alongside your loved one: Heidi, Mike’s care partner
For Mike, the partnership looked different than traditional patient-provider care. Heidi, his wife, became his advocate in ways he couldn’t do alone. She called cancer centers every day looking for earlier appointments. She negotiated with insurance companies. She tracked details that were rarely spelled out in advance.
Her role throughout the journey demonstrates what it means to be a true support system. You need someone who shows up consistently, advocates fiercely, manages details no one else sees and holds the family together through uncertainty.
Heidi’s partnership with Mike reminds us that cancer isn’t something a patient faces alone. It’s a shared journey.
Living forward
All five are moving forward, just in different ways, at different stages and with different horizons. But what connects them across age, gender, stage and treatment path is their refusal to let a diagnosis take hold of their lives.
Their stories involve insisting on being heard. Asking questions. Demanding more from their healthcare teams and from themselves.
If you or a loved one has been diagnosed with bladder cancer, speak with your healthcare provider about available resources.