Mary’s Story: “This has been a difficult chapter in my life, but it’s far from the end of my story.”

20 Years of Impact: 20 Voices of BCAN

For two decades, the Bladder Cancer Advocacy Network (BCAN) has been a beacon of hope, support, and advocacy for patients and their loved ones. As we celebrate 20 years of collective progress, we honor the voices that have shaped this journey—those who have faced bladder cancer with resilience, and those who have provided unwavering support.

Through our 20 Voices initiative, we are sharing powerful personal stories that highlight the impact of bladder cancer and the strength of our community. These voices reflect the challenges, triumphs, and hope that define BCAN’s mission for better todays and more tomorrows for all those impacted by bladder cancer. 

What started as a peaceful weekend escape quickly unraveled into an ordeal that would change everything for Mary Sullivan. A sudden, relentless need for the restroom turned a simple getaway into a deeply alarming experience, leading to an unexpected diagnosis and a journey that tested every ounce of resilience and strength. From a mysterious bladder stone to a life-altering discovery, Mary navigates fear, adversity, and ultimately, survival—proving that even the darkest moments can give way to light. This is her story:

I was staying at a charming bed and breakfast in Portsmouth, New Hampshire, thinking I’d enjoy a peaceful weekend getaway. Instead, I found myself unable to leave the bathroom. Urgency and frequency took over, demanding I visit the restroom every five minutes.  This is no exaggeration. It was incredibly disruptive, hitting me out of nowhere and leaving me both frustrated and alarmed.

This was around March 2021. At first, I thought it might be a urinary tract infection (UTI), even though I hadn’t had one in over 30 years. I called my primary care physician and started antibiotics right away, hoping that relief would come quickly. But it didn’t. I began tracking my bathroom visits in a notebook, noting the sheer frequency and severity of the issue. After 12 agonizing days and three different antibiotics with no improvement, I told my doctor, “This isn’t working. Something else is going on.”

Eventually, I was referred to a urologist, though it took several weeks to get an appointment. During that time, I felt like my life had come to a standstill. Every outing or task was overshadowed by my constant need for a bathroom. When I finally saw the urologist, a series of tests and scans revealed the culprit: a large bladder stone, measuring 3.5 cm. I had never even heard of bladder stones before, let alone imagined I could have one.

The plan was to remove the stone under general anesthesia, and I felt a glimmer of hope that this might be the answer to all my problems. The surgery went smoothly, and I remember waking up relieved, thinking the ordeal was over. But the very next day, I received a phone call that changed everything. The urologist explained that while the stone was gone, he had noticed some abnormal tissue around the area. It looked concerning, he said, and he hadn’t taken a biopsy during the initial procedure. I would need to come back for an in-office cystoscopy to obtain a tissue sample.

Waiting for the biopsy results was one of the most agonizing experiences of my life. When the call finally came, it confirmed my worst fears: I had bladder cancer. The news hit me like a truck. How could this be happening? I thought the bladder stone was the end of my problems, not the beginning of something far more serious.

From that moment, life became a whirlwind of appointments, tests, and difficult decisions. My initial tumor staging was T1, and I was referred to specialists at Dana-Farber and Brigham and Women’s Hospital in Boston. After more imaging and testing, the staging was revised to T2. This changed everything. BCG treatment was no longer an option, and it became clear that I would lose my bladder.

By this point, I had started educating myself extensively. I read every resource I could find, including materials from BCAN, which proved invaluable. I realized that my priority was survival above all else. Losing my bladder wasn’t an easy decision, but it was necessary. My surgeon and I discussed reconstruction options and given my history of vaginal cancer at age 22—caused by DES exposure during my mother’s pregnancy—we decided that an ileal conduit was the safest choice. Radiation damage from my earlier cancer made other options less viable.

Before surgery, I underwent neoadjuvant chemotherapy. It was brutal. I suffered acute kidney injury and severe anemia which required blood transfusions. At the same time, my bladder ruptured. By the time I went in for my radical cystectomy in January 2022, I already had a Foley catheter in place because my bladder had essentially given up. I remember feeling both anxious and oddly ready. I just wanted to move forward.

The surgery itself was successful, but the recovery was far more complicated than anyone anticipated. What was supposed to be a four- to seven-day hospital stay turned into six weeks. I developed multiple complications, including a stay in the ICU due to sepsis and a life-threatening drop in blood pressure. I became so weak after being hospitalized for six weeks that I was deconditioned and reliant on a walker. It was one of the hardest times of my life, but I was determined to get better.

After being discharged, I spent two weeks in an inpatient rehabilitation center, focusing on regaining my strength. My motivation was clear: I wanted to dance at my daughter’s wedding in September. That goal became my beacon of hope, something to work toward every single day. Physical therapy, nursing care, and the unwavering support of my family and friends carried me through.

By May, I was well enough to attend my daughter’s bridal shower. I remember feeling such immense gratitude that I had made it to that milestone. And in September, I fulfilled my promise to myself: I danced at her wedding. It wasn’t the most graceful performance, but it was one of the most joyous moments of my life.

Now, three years post-surgery, I’ve resumed a full and vibrant life. I’ve traveled internationally, swum in the ocean, gone on cruises, and walked miles exploring new places. I’ve celebrated birthdays, anniversaries, and countless moments with loved ones. Every day, I’m grateful to be alive and cancer-free, though I’ll never forget the journey that got me here.

If I could offer advice to someone newly diagnosed, it would be this: don’t walk this path alone. Accept help—whether it’s meals, rides, or emotional support—and let others in. It’s humbling to ask, but it’s also empowering. And educate yourself. Knowledge truly is power, and resources like BCAN can make all the difference in navigating such a challenging experience.

This has been a difficult chapter in my life, but it’s far from the end of my story. I’ve learned resilience, gratitude, and the importance of leaning on others, and I’m determined to make the most of every moment I’ve been given.