From Birth to Beyond: Mary’s Story

Courage Beneath the Surface: Facing a Bladder Cancer Diagnosis After a Lifetime with Spina Bifida

I never imagined that being born with Spina Bifida-Myelomeningocele would also lead me to a diagnosis of bladder cancer at the age of 44. I was shell-shocked. I asked myself why and how this could happen. Hadn’t being born with Spina Bifida been enough? It had. But, unfortunately, according to the American Cancer Society, “Bladder Cancer is the 10th leading cause of cancer death in the U.S.” And studies suggest that the occurrence of bladder cancer is becoming more common in those living with Spina Bifida. In fact, according to Shine – Spina Bifida & Hydrocephalus Association, “They (those with Spina Bifida) often present late in the (bladder cancer) disease process and have a poor prognosis. Many of the symptoms are vague or symptoms which adults with Spina Bifida may experience throughout their lives (haematuria, recurrent UTI, incontinence). In addition, cognitive issues might lead to a further delay in seeking medical advice.”

Little did I know that the lifelong effects of Spina Bifida would contribute to my cancer:

• Dehydration
• Bladder surgeries
• A Neurogenic Bladder
• Urinary reflux into the kidneys
• Chronic urinary tract infections
• Chronic Bladder Inflammation
• The ACT of self-catheterizing
• Self-catheters themselves (toxic plastic)
• Bladder augmentation surgeries (especially the type done 17+ years ago)

ALL of this applied to me, and ALL are risks for Bladder Cancer! How could I not know about this?! I considered myself a very educated and informed individual. Now I was facing bladder cancer after a lifetime of living with Spina Bifida.​

But, how did all of this start? Let me start from the beginning – the DIAGNOSIS.

To begin, I had NO urological symptoms of any kind. I had pelvic pressure. So, in September 2024, the pursuit of a diagnosis for my “pelvic pressure” began. I saw my Gynecologist. First, she thought I just had a bladder infection because my urine results came back positive. However, keep in mind that due to Spina Bifida, my urine is always colonized with bacteria, and determining whether to treat or not treat the bacteria is always a decision in itself. I took the antibiotics out of an abundance of caution. But, I knew I had never had pelvic pressure before with a UTI, and something about this pressure and pain felt “different.”

A Transvaginal Ultrasound is similar to a regular ultrasound, but a small probe is placed inside of you to see detailed images of the pelvic organs. I received the ultrasound results on October 10, 2024. They read: “Interval increase in size in the 2 right ovarian cysts. Although they have no internal

architecture or flow if warranted an MRI of the pelvis may be performed for further evaluation.”

The results were somewhat vague, and there was no mention of the bladder. It even only suggested an MRI follow-up “IF warranted.” But my Gynecologist and I were worried about the rapid increase in my ovarian cysts between now and July, which was such a short amount of time. We felt an MRI WAS warranted. And she referred me to a Gynecological Oncologist to see and schedule it. I requested the MRI be ordered prior to my appointment though. I remember thinking that I wasn’t going to wait until I saw the doctor and then have the test, as this could delay my diagnosis for weeks. I was VERY familiar with ovarian cancer – and I didn’t want to die from it. I was scared.

I saw the Oncologist, but we all had to wait for the MRI results to move forward.

On October 19, 2024, as I was walking to the bus for an appointment with a new Gastrointestinal doctor to discuss my annual Endoscopic Ultrasound and Colonoscopy, I received a call from my Gynecologist with the results of the MRI. She started with the good news that the cysts and ovaries were actually fine. So, I thought I was in for some standard “Everything is okay” – I was worried for no reason response. Instead, her voice got very stark, in a way I had never heard it before. The results said:

“The urinary bladder is distorted and appears adherent to the right anterior abdominal wall. There is a 3.8 x 2.3 x 2.0 cm (hard) mass associated with the right anterior bladder wall, which is favored to be serosal or intramural in location. This demonstrates restricted diffusion and is indeterminate. Comparison with any previous imaging of thebladder is suggested. As clinically warranted, further evaluation could be obtained with CT urogram.”

She was very clear that the image results did not reflect a cyst, bladder stone, or scar tissue—the typical things one might find in the bladder. Her starkness gave way to sincere sadness, and at the end of the call, she said, “Good luck.”

Her concern told me all I needed to know, and my heart dropped to my stomach. I was suddenly filled with rage. Rage that this was never on my radar. Ever. I had no idea I was susceptible to this. Why hadn’t doctors told me? Why wasn’t this more commonly spoken about in public? I had female cancers on my radar, as I feel most women do my age – breast cancer, ovarian cancer, even cervical and endometrial cancer… But NEVER, EVER this.

I sat on the bus stunned, but then very quickly navigated to my female Spina Bifida Facebook Group. I searched the terms “bladder cancer” and “masses,” and a wealth of information came up – once again leaving me even more stunned and outraged. The test results were medically still inconclusive, but after educating myself on what some of my Spina Bifida peers had been through and why they were susceptible (which were reasons I’d be susceptible), in my heart of hearts, I knew in that moment that I had bladder cancer. And I was mad as hell.

My next stop was with a Urological Oncologist, since a Gynecological Oncologist was no longer necessary. I met with his intern first. He drew me a picture of what they saw in the imaging and said that bladder cancer doesn’t usually start in the wall of the bladder….which is what they were seeing. So, he said he HIGHLY DOUBTED it was cancer. He was wrong AND right. He was right that bladder cancer doesn’t usually start in the wall of the bladder. Mine hadn’t either. But he was wrong about it not being cancer, as we later found out, it was in the wall because I was already stage 3 and muscle-invasive. Had I listened to his intern and not worried about it, I might not be here today.

The actual Oncologist thankfully followed up after the Intern, and he made me take a urine culture to test for cancer cells and put an order in to have a Cystoscopy. They couldn’t schedule a cystoscopy for me for a couple of weeks. So, I immediately contacted Memorial Sloan Kettering Cancer Center and met with a Urological Oncologist within a few days. The Cystoscopy was scheduled for the following week. This would be my home from now on, and I am so glad it was.

Cystoscopies may be recommended for any of the following reasons:

• Urinary tract infections (UTIs): To diagnose & treat recurrent/persistent UTIs.
• Blood in the urine (hematuria): To identify bleeding sources in the urinary tract.
• Bladder stones: To detect and remove bladder stones.
• Urinary incontinence: To assess the cause of incontinence and determine possible treatment options.
• Difficulty urinating: To investigate problems with urination, such as difficulty starting or stopping the urine flow.
• Abnormal urine test results: To follow up on abnormal findings on a urine test.
• Monitoring treatment: To monitor the effectiveness of previous treatments for urinary tract conditions.
• Before surgery: To assess the condition of the bladder and urethra before undergoing surgery on the urinary tract.
• Bladder cancer: To screen for or monitor bladder cancer.

Based on these reasons above, one could easily surmise that Cystoscopies could be warranted more often for those with Spina Bifida – thus potentially leading to an earlier detection of bladder cancer and more positive survivor outcomes. At the very least, I should’ve been having one once a year, given all of these reasons. But no one ever suggested this. Perhaps an annual Cystoscopy could have identified my cancer sooner. But we will never know.

On October 30, 2024, I had already seen three doctors, had four major tests (Transvaginal ultrasound, MRI, Urine Culture, and a Cystoscopy) before I had my FIRST OBVIOUS SIGN of bladder cancer – blood in my urine. It started with just a little bit of blood that most women might shrug aside because of our female anatomy. But the next day it happened again, and there was a LOT of it. The blood continued a couple more times.

The first week of November, the Cystoscopy results confirmed two “very concerning” masses.

And on November 18, 2024, on my first wedding anniversary, we received the urine results in my portal, which showed that cancer cells were found in my urine. No one followed up with us to review the results from my last doctor’s office, so we forwarded them to my Memorial Sloan Kettering Oncologist.

On November 22, 2024, the cancer was removed from the bladder during an outpatient procedure called Transurethral Resection of Bladder Tumor (TURBT). The masses would be biopsied. But, because a portion of the mass was in the muscle of the bladder, this part could not be removed.

November 29 (Black Friday) 2024, the surgical pathology report came back showing aggressive, muscle-invasive Bladder Cancer. We knew it would be cancer. We weren’t prepared for an “aggressive” kind. And since it was muscle-invasive, it was already looking to be stage 3.

Despite all the diagnostic milestones leading up to this, I consider December 6, 2024, my official “Diagnosis Day”, since this is the day my Surgical Oncologist personally confirmed the diagnosis with my husband and me. Shortly after, on December 13th (Friday the 13th) 2024, I received confirmation that the cancer would be removed by taking out my bladder. In the new year, my whole life would change, and I would have an open surgery called a Radical Cystectomy/Urostomy. My bladder would be removed, and my small intestine would be cut to create an Ileal conduit (urinary diversion) to place a permanent hole (stoma) in my abdomen with a permanent bag OUTSIDE of my body that attaches to the stoma. This would be the very first step to stopping cancer in its tracks.

Surgery is typically recommended when someone has stage 3 bladder cancer or a kind like I was diagnosed with, Squamous Cell Carcinoma of the Bladder. Per the National Institute of Health (NHI) / PubMed, 2021:

There are different types of Bladder Cancer, and all of them can act, are handled, and treated differently. But it wouldn’t be until after the surgery that we would find out my REAL diagnosis. Stay tuned for next week’s blog installment to find out what happened next.​

And remember, if you’d like to help raise awareness of Spina Bifida + Bladder Cancer, you can vote for me in the National Fab Over 40 competition. The contest celebrates women over 40 and their achievements. The winner will be featured in the pages of New Beauty magazine to share their story. Winning this title will allow me to bring the much-needed attention to this cause. Votes are FREE and you can vote every 24 hours: https://fabover40.org/2025/mary-67c6

You can also pay for additional votes if you’re so inclined! All proceeds go directly to the National Breast Cancer Foundation.

Thank you, be well, and stay tuned for my next installment!

​#SpinaBifida #SpinaBifidaAwareness #SBANYSCommunity #SpinaBifidaStrong #AdultWithSpinaBifida #BladderCancer #CancerAwareness #NBCF #FabOver40 #NewBeauty #ColossalImpact