From Birth to Beyond: Mary’s Story
Your Bladder Cancer Checklist
Living with Spina Bifida demands extraordinary strength, resilience, and self-advocacy. It’s not just about managing daily challenges—it’s about being proactive, vigilant, and informed. One critical fact is that Bladder Cancer can arise from the conditions and complications linked to Spina Bifida. Recognizing this connection empowers you to spot warning signs early and understand how easily symptoms of both can overlap. Your health is too important to risk—be proactive, stay alert, and advocate for yourself without delay.
Explore the essential checklists below to understand key risk factors, warning signs, recommended tests, and valuable resources. Your knowledge can make a critical difference in identifying and treating Bladder Cancer.
RISK FACTORS FOR BLADDER CANCER CHECKLIST
- Dehydration
- Bladder surgeries
- Neurogenic bladder
- ACT of self-catheterizing
- Chronic bladder inflammation
- Urinary reflux into the kidneys
- Bladder augmentation surgery
- Chronic urinary tract infections
- Self-catheters themselves (toxic plastic)
SIGNS & SYMPTOMS FOR BLADDER CANCER CHECKLIST
Bladder Cancer symptoms are often overlooked in people with Spina Bifida, both by patients and doctors. Warning signs are frequently dismissed as just another urinary tract infection, catheterization trauma, or even a menstrual cycle—allowing something much more serious to progress unnoticed. Unlike common illnesses, cancer doesn’t always make you “feel sick.” Symptoms can be subtle, delayed, or even absent, making early detection especially challenging.
In my own case, the only symptom I experienced before realizing something was wrong was pelvic pressure. Blood in my urine appeared only after Bladder Cancer was suspected—and by then, my cancer had already reached stage 3. Even minor changes matter: trust your instincts, listen to your body, and push for answers if something feels off — never ignore small changes. Here are common signs and symptoms:
- Cloudy urine
- Pelvic pressure
- Foul odor in urine
- Burning during urination
- Increased urinary urgency
- Increased urinary frequency
- Lower back pain or pressure (often on one side)
- Blood in urine and/or on toilet paper and/or in toilet (the TINIEST drop)
EXAMINATIONS
A variety of tests can play a vital role in detecting Bladder Cancer, and acting quickly can make all the difference. Timely, thorough testing is critical for early diagnosis and better outcomes. Below are some of the essential tests that may be used—sometimes individually, often together—to ensure nothing is missed:
MRI:
An MRI (Magnetic Resonance Imaging) is good at detecting bladder cancer because it gives very detailed pictures of soft tissues, which helps doctors see tumors and how far they have spread. MRI’s may not be the first test for Bladder Cancer though. A cystoscopy (looking inside the bladder with a camera) is still the gold standard for diagnosis. MRI’s are mainly used for staging, treatment planning, and follow-up.
CT Urogram
A CT urogram is excellent for detecting bladder tumors and evaluating the whole urinary tract, but cystoscopy remains the gold standard for diagnosis, and MRI is better for detailed local staging.
Cystoscopy
Cystoscopies are one of the most effective tools for spotting early signs of Bladder Cancer. Imaging tests (CT urogram, MRI, ultrasound) can suggest cancer, but only a cystoscopy can directly see the tumor, helping to provide a more definitive diagnosis. A cystoscopy cannot detect spread outside the bladder—this is where the MRI and CT are used.
Urinalysis
Urinalysis supports bladder cancer diagnosis by detecting hematuria (blood in the urine) and abnormal urothelial cells, acting as a non-invasive screening and monitoring tool, but it cannot replace a cystoscopy.
Urine Cytology
Urine cytology is helpful in diagnosing Bladder Cancer because it can detect cancerous cells that are shed from the bladder lining into the urine. Urine cytology aids in a Bladder Cancer diagnosis by identifying malignant urothelial cells in urine, particularly high-grade tumors, but it complements rather than replaces a cystoscopy.
Biopsy (TURBT)
A biopsy via TURBT (Transurethral Resection of Bladder Tumor) is good at detecting Bladder Cancer because it provides direct tissue confirmation, which is required for a definitive diagnosis. TURBT is the gold-standard diagnostic test for bladder cancer because it provides histological confirmation, tumor grading, and assessment of invasion depth.
Pet Scan
A PET scan (Positron Emission Tomography) is helpful in Bladder Cancer mainly because it can detect metabolically active cancer cells, especially spread beyond the bladder. They are mainly used for staging and recurrence rather than primary tumor detection.
CHOOSING THE RIGHT PHYSICIAN
Too often, Urologists, Nephrologists, Gynecologists, and General Practitioners overlook the warning signs of Bladder Cancer because these symptoms so frequently overlap with other conditions. If you have any suspicion of cancer, trust your instincts—seek out an Oncologist immediately. Your determination to get answers could save your life.
RESOURCES
National Cancer Institute (NCI) Designated Cancer Centers
When facing cancer, the quality of your care team and treatment facility can make all the difference. The National Institutes of Health (NIH) leads the world in medical research and public health, and under its umbrella, the National Cancer Institute (NCI) stands as the primary U.S. agency dedicated to cancer research and innovation.
The NCI Cancer Centers Program, established by the National Cancer Act of 1971, is a cornerstone of America’s fight against cancer. Through this program, NCI recognizes and supports centers across the country that meet the highest standards of research, innovation, and patient care. These centers are trailblazers in developing new and better approaches for preventing, diagnosing, and treating cancer.
NCI-designated cancer centers—such as MD Anderson and Memorial Sloan Kettering Cancer Center—are renowned for their outstanding patient care, groundbreaking research, and access to advanced treatments and clinical trials. Many of these centers are affiliated with top universities and are at the forefront of cancer care in the United States.
Currently, there are 73 NCI-Designated Cancer Centers in 37 states and the District of Columbia, all funded to provide patients with the latest breakthroughs and comprehensive support.
For people with Spina Bifida, whose medical needs are often complex, choosing a center with the most advanced equipment and expertise is especially important. At these NCI-designated facilities, you gain access to:
– The latest therapies and clinical trials unavailable elsewhere
– Integrated, comprehensive services (surgery, radiation, pharmacy, labs, social work, and nutrition)
– Direct connections to cutting-edge research, ensuring that new discoveries are translated quickly into better care
Explore the list of NCI-designated cancer centers below and choose a center that prioritizes both your health and hope. The right care can truly change your outcome.https://www.cancer.gov/research/infrastructure/cancer-centers/find
MEMORIAL SLOAN KETTERING CANCER CENTER
If you notice anything unusual or have even the slightest concern, don’t wait—reach out to an NCI-approved center immediately. As a patient at Memorial Sloan Kettering Cancer Center in NYC, I can personally attest to their world-class expertise. Consistently ranked number one in Urology Cancer Care by U.S. News & World Report, they are equipped with specialized teams for even the most complex cases. You don’t need a formal diagnosis, a referral, or a stack of paperwork—just make the call. From my experience, one simple phone call connects you with a compassionate Care Advisor who will walk you through every step, making sure you never face this journey alone.
Phone # 855-391-0222
To learn more about Bladder Cancer and access trusted resources, visit their official website:
https://www.mskcc.org/cancer-care/types/bladder
BLADDER CANCER ADVOCACY NETWORK (BCAN)
The Bladder Cancer Advocacy Network (BCAN) stands as one of the leading national forces in the fight against bladder cancer, empowering patients, driving groundbreaking research, and giving a powerful voice to those affected by Bladder Cancer. Since 2005, BCAN has provided critical resources, education, and a supportive community, while advocating for stronger national policies and funding innovative research. Through support groups, treatment comparison tools, and a dedicated helpline, BCAN is committed to advancing science and improving lives—ensuring that no one walks this journey alone.
How BCAN Makes a Difference –
Patient Support & Education: BCAN offers a lifeline to patients and families—providing comprehensive resources, active online communities, a helpline, and support groups (in-person, virtual, and hybrid) to help navigate the physical and emotional challenges of Bladder Cancer.
Research Advocacy: BCAN invests in bold, high-impact research, directly involves patients in shaping research priorities through the Patient Survey Network (PSN), and builds a strong pipeline of future bladder cancer experts.
Policy Advocacy: BCAN tirelessly champions change on Capitol Hill and beyond, fighting for increased research funding, removing barriers to care, and ensuring patients’ voices are heard in healthcare policy.
Awareness: BCAN shines a spotlight on bladder cancer, raising awareness in the public and medical communities for a disease that too often goes unrecognized.
Learn more and connect with this empowering community at: https://bcan.org/
FACEBOOK GROUPS
Facebook groups can be a valuable and effective use of resources for individuals affected by bladder cancer, including patients, survivors, caregivers, and loved ones. These online communities provide accessible support, shared knowledge, and emotional connection during what can be an overwhelming and isolating experience.
One of the most important benefits of Facebook groups is emotional support. Members can connect with others who truly understand the physical and emotional challenges of a bladder cancer diagnosis, treatment, and recovery. Sharing experiences with surgeries, treatments such as TURBT, BCG therapy, chemotherapy, or cystectomy can help reduce fear, provide reassurance, and foster a sense of belonging.
Facebook groups also offer practical, experience-based information. Members frequently discuss side effects, recovery timelines, lifestyle adjustments, diet considerations, and coping strategies. Hearing firsthand experiences can help individuals prepare for what to expect and formulate meaningful questions for their healthcare providers. While these groups do not replace professional medical advice, they can complement clinical care by increasing patient awareness and confidence.
Accessibility is another major advantage. Facebook groups are typically free, easy to join, and available at any time. This makes them especially helpful for individuals who may have limited energy, mobility challenges, or difficulty attending in-person support groups due to treatment schedules or geographic barriers.
In addition, many bladder cancer Facebook groups share valuable resources such as links to reputable cancer organizations, research updates, clinical trial information, financial assistance programs, and educational materials. Caregivers can also benefit from these groups by learning how to provide better support and manage their own stress.
Overall, Facebook groups are a beneficial resource for bladder cancer support because they combine emotional encouragement, shared lived experiences, practical information, and accessibility. When used alongside guidance from medical professionals, these communities can play a meaningful role in helping individuals and families navigate the bladder cancer journey with greater confidence and support.
SPINA BIFIDA ASSOCIATION
The national Spina Bifida Association and Spina Bifida Association of New York State are tremendous resources when it comes to information, education, and support with Bladder Cancer.
Join me this Thursday, December 18, 2025, at 7 pm ET as I serve as a Guest Speaker at the National Spina Bifida Association’s Community Information Session: Bladder Cancer in People with Spina Bifida.
In this session, I will join Dr. Routh for a discussion on diagnosing and treating bladder cancer in adults with Spina Bifida, understanding unique risks, exploring treatment options, and screening. This is a chance to hear from both lived experience and clinical expertise on a critical, often overlooked health issue in the Spina Bifida community.
If you or someone you know is impacted by Spina Bifida – you MUST attend.
#SpinaBifida #SBANYS #SBANYSCommunity #NYSpinaBifida #SpinaBifidaAwareness #SpinaBifidaStrong #AdultWithSpinaBifida #BladderCancer #CancerAwareness
Mary Dobson
Individual Living with Spina Bifida