From Birth To Beyond: Mary’s Story
Spina Bifida + Bladder Cancer Takeaways
A Shocking Realization
This blog series has aimed to shed light on the often-overlooked link between Spina Bifida + Bladder Cancer —a connection rarely discussed but deeply impactful. Before I was diagnosed with a mass in my bladder, the possibility of it being related to my Spina Bifida had never crossed my mind or been mentioned to me. My experience revealed the urgent need for greater awareness. Here are some important lessons from my journey that I hope will make a difference for others.
Why Bladder Cancer Symptoms Are Often Masked in Spina Bifida Patients
Bladder Cancer can be challenging to identify early in anyone, but for people living with Spina Bifida, the difficulty is even greater. Many of the classic warning signs of Bladder Cancer—such as blood in the urine, urinary urgency, pain, or changes in bladder habits—can be subtle, absent, or easily confused with everyday bladder issues that are already common in Spina Bifida.
With a neurogenic bladder, sensation can often be reduced or altered, and patients may not feel the discomfort or irritation that typically alerts others to a problem. Symptoms like pelvic pain or burning during urination, both common red flags for Bladder Cancer, may not be perceived at all.
Another challenge is that many individuals with Spina Bifida experience frequent urinary tract infections (UTIs), mucus production, or chronic inflammation—issues that can mimic or obscure signs of cancer. For example, cloudy urine, foul odor, or increased frequency might be dismissed as “just another infection,” even when something more serious is developing. Similarly, blood in the urine can be attributed to catheterization trauma or infection, making it challenging to recognize when it’s a symptom that should be investigated further.
Additionally, some patients (like myself) have undergone bladder reconstruction or bladder augmentation surgeries, which can introduce intestinal tissue into the urinary tract. These surgeries can change the appearance and behavior of the bladder, creating symptoms that overlap with those of malignancy and further complicating early detection.
Because symptoms can be so easily masked, relying on how the bladder or one “feels” is often not enough. This is why regular surveillance—through cystoscopies, imaging, and routine follow-ups —is especially important for people with Spina Bifida. Early detection dramatically improves outcomes, and proactive monitoring ensures that changes are caught before they become serious.
In short, the very conditions and treatments that help manage Spina Bifida can unintentionally hide the warning signs of bladder cancer. Staying informed, attentive, and engaged in routine care is key to maintaining long-term bladder health.
Bladder Cancer Risk in People With Bladder Augmentations
Bladder augmentation—a surgery often performed to increase bladder capacity or reduce pressure in conditions like neurogenic bladder—has been a transformative surgery for many patients. It was for me. I received one in 2007. However, it has also raised long-term questions about cancer risk. While Bladder Cancer after augmentation can be considered rare, it is taken seriously in the medical community because when it does occur, it may be diagnosed at a later stage (like mine).
One factor influencing this risk is the use of intestinal segments in the reconstruction. Bringing bowel tissue into contact with urine changes the chemical environment of the bladder. Over time, chronic inflammation, recurrent infections, and long-standing exposure of bowel mucosa to urine byproducts may contribute to cellular changes that increase the risk of malignancy. Most reported cases involve Adenocarcinoma, a type of cancer more typical of intestinal tissue than the bladder’s native lining.
Despite these concerns, some feel the overall likelihood of developing bladder cancer after augmentation remains low, especially when compared with other risk factors such as smoking or long-term catheterization. Still, because the risk is higher than in the general population, many clinicians recommend regular monitoring, which may include urine cytology, cystoscopic exams, or imaging—particularly starting a decade or more after the surgery. For patients, the key takeaway is to stay informed and vigilant, and to schedule routine and annual check-ups and imaging.
The Importance of Having the Right Practitioners for Bladder Cancer Care in Spina Bifida Patients
For people living with Spina Bifida, bladder health is complex. Neurogenic bladder, catheterization, frequent urinary tract infections, and surgical interventions like bladder augmentation all create a unique medical landscape. Given this complexity, having the right healthcare providers—specialists in testing, diagnosis, and treatment—is critical to detecting and managing bladder cancer. Standard screening or treatment approaches may not be sufficient. For example, detecting abnormal tissue during a cystoscopy in a reconstructed bladder or augmented bladder can be more challenging than in a typical bladder, and misinterpretation can lead to missed or delayed diagnoses.
In addition, managing Bladder Cancer in patients with Spina Bifida often requires a multidisciplinary team: urologists familiar with reconstructive surgery, oncologists experienced in urinary tract cancers, radiologists who can interpret complex imaging, and specialized nursing staff who understand catheterization and long-term bladder care. Coordinated care ensures that testing is accurate, treatment plans are safe, and long-term bladder and kidney function are preserved.
Ultimately, the right practitioners bring experience, knowledge, and vigilance that significantly improve outcomes. They can tailor surveillance schedules, recognize subtle warning signs that might be overlooked elsewhere, and intervene promptly if abnormalities arise. For Spina Bifida patients, this specialized care isn’t just beneficial—it can be life-saving.
Why Cystoscopies Matter for Spina Bifida Patients: Early Detection of Bladder Cancer
Bladder management can be a lifelong part of daily health care for those living with Spina Bifida. Conditions such as neurogenic bladder often require interventions like intermittent catheterization, bladder augmentation, or long-term use of stomas or indwelling catheters. While these approaches are essential for protecting kidney function and maintaining quality of life, they also can come with an increased risk of bladder cancer over time.This is where cystoscopy plays a vital role. A cystoscopy allows clinicians to look directly inside the bladder and urethra using a small camera, making it one of the most effective tools for spotting early signs of cancer. For Spina Bifida patients, several factors make this type of monitoring especially important. Chronic inflammation, recurrent urinary tract infections, long-standing catheter use, and the presence of intestinal tissue when a bladder augmentation has been performed can all create an environment where abnormal cells are more likely to develop. Early changes may not cause noticeable symptoms, so relying on warning signs alone isn’t enough.
Routine cystoscopic surveillance helps catch problems before they become serious. Detecting cancer at an early stage dramatically improves treatment outcomes and, in many cases, makes it possible to address issues with less invasive interventions. Even when findings are benign, cystoscopy provides peace of mind and helps patients and caregivers stay proactive about bladder health. Following through with cystoscopies ensures that any concerning changes are identified early—supporting long-term health, independence, and quality of life.
Why Bladder Cancer Appears More Often in Men and Is Often Missed in Women
In the general population, Bladder Cancer is diagnosed more frequently in men than in women. But research suggests that women often face delays in diagnosis, which can affect outcomes. Several biological, anatomical, and social factors contribute to these differences.
1. Biological and Lifestyle Factors:
Men have historically had higher exposure to risk factors such as smoking and certain industrial chemicals, which partially explains the higher overall incidence. Hormonal differences may also influence tumor development, though research is ongoing.
2. Symptom Overlap and Misattribution in Women:
Women are more likely to experience urinary tract infections, which can mimic early Bladder Cancer symptoms like blood in the urine or urinary frequency. Because these symptoms are commonly attributed to infections rather than cancer, women may experience delays in referral for further testing, such as cystoscopy.
3. Anatomical Considerations:
The female urinary tract is shorter, and Bladder Cancer can present differently, sometimes with less obvious hematuria or irritation. These subtle differences can contribute to missed or late diagnoses if clinicians do not maintain a high index of suspicion.
4. Importance of Vigilance:
Given these challenges, healthcare providers emphasize that any unexplained hematuria or persistent urinary symptoms in women should prompt evaluation for Bladder Cancer, even if urinary tract infections are suspected. Early detection remains the key to improved outcomes for both men and women.
How I Found Strength I Didn’t Know I Had
I remember the moment I knew I had Bladder Cancer. My world stopped for a second, and a wave of anger and fear washed over me. I kept asking myself: How will I get through this? How will I survive the treatments, the surgeries, the uncertainty? It all felt too heavy to bear.
The days that followed were a blur of appointments, scans, and tests. Each one brought new anxiety. But slowly, almost imperceptibly, I realized something: I was enduring.
I discovered that strength isn’t a sudden superpower—it’s built in small moments. Sitting through a long procedure, taking my medications, listening to my doctors’ instructions, leaning on friends and family—each of these moments was a quiet act of courage. Even on days when I felt weak or scared, I kept moving forward.
There were setbacks, of course—pain, exhaustion, frustration—but I learned to celebrate the little victories: a test that went well, a treatment completed, a day when I felt normal again. Those moments reminded me that I was stronger than I thought.
Having Bladder Cancer or any type of medical condition isn’t about pretending it’s easy—it’s about facing it, step by step, and trusting that you can survive even the hardest days. I didn’t know how I would make it at first. But I did. And that makes me believe that we are all capable of more than we imagine.
Vote for Spina Bifida
Today (12/10) and tomororw (12/11) are the last days to vote for me in the Semi-Finals of the Fab Over 40 competition, which celebrates women’s accomplishments over the age of 40! This week I celebrated my one year cancer survival anniversary – which is already a big deal in an of itself, but even more so knowing that the estimated survival rate for those with my diagnosis is 8% over 5 years. So, please share in my celebration today and tomorrow with a gifted donation toward the The National Breast Cancer Foundation! All proceeds are tax-deductible and helps me inch closer to the number one spot to advance to the finals! You need a Facebook account to vote for free, but anyone can purchase votes!
Vote now here:https://fabover40.org/2025/mary-67c6
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Mary Dobson
Individual Living with Spina Bifida