Dorothy De La Garza had frequent urinary tract infections. Then she was told she had “an overactive bladder.”
“Everyone assumes a woman is leaking because she’s old,” the 78-year-old from Austin said.
After years of being on antibiotics on and off, and going to both a urologist and her primary care doctor for the same symptoms, De La Garza was diagnosed with bladder cancer in 2016.
“Bladder cancer is sneaky,” she said.
Two years ago, Vickie Dunlevy had a weird pain sometimes when she would urinate. A urinalysis revealed nothing. She was sent to a gynecologist, thinking it might be her uterus, but still nothing.
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Finally, blood showed up in her urine and she was sent to a urogynecologist, who ordered a CT scan and a cystoscopy (a scope that goes into the bladder).
“Women don’t get cancer of the bladder,” she remembers thinking, “It’s an old man’s smoker’s disease.”
Dunlevy, who is now 68, was diagnosed with bladder cancer in November 2020.
A forgotten cancer
More than 81,000 people will be diagnosed with bladder cancer this year and 17,000 will die from it, the American Cancer Society estimates.
Bladder cancer is the sixth most common cancer in the United States.
Typically bladder cancer symptoms include:
- Blood in the urine
- Having to urinate frequently
- Pain while urinating
- Back pain
- pelvic bread
While it’s true about three-fourths of the cases happen in men, said Dr. Aaron Laviana, an assistant professor and member of the Livestrong Cancer Institutes at Dell Medical School at UT Austin, it’s a stereotype that women don’t get bladder cancer. Often, they are misdiagnosed as having a urinary track infection or a reproductive issue.
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When they are diagnosed, Laviana said, they often have more advanced disease. In men, 80% of the time, bladder cancer is superficial and has not reached the muscle layers. It can be managed without the need to remove the bladder, he said.
Both De La Garza and Dunlevy’s cancers had progressed to the muscle layer, which meant they needed chemotherapy and then a removal of the bladder.
“I’m on a mission,” De La Garza said. She wants more women to not just accept that they have UTIs or that incontinence is normal. “Everyone talks about colon and prostate and ovarian cancers,” she said, but no one is talking about bladder cancer.
“It doesn’t get the press and attention, but it affects so many people,” Laviana said.
A bladder cancer care desert
Before 2020, often people with bladder cancer who needed a bladder removal surgery would go to San Antonio, Houston or Dallas for care.
“This was a healthcare desert for urological oncology,” said Laviana, who came to Austin in August 2020.
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“We’re making this a bladder cancer center of excellence,” he said of the Livestrong Cancer Institutes.
Surgeries to remove the bladder and create a new path for the urine are complex, he said. They require someone who is fellowship trained and has seen a large volume of these surgeries, Laviana said.
The care management after the operation also requires a specialist, he said. “The marathon starts after the operation,” he said.
After the bladder is removed, doctors create a different kind of urine collection system out of part of the small intestine in what is either called a neobladder (an internal bladder), an ileal conduit (a small pouch that connects the ureters to an external ostomy bag), or pouch system like an Indiana pouch (a bigger pouch inside the body that then gets emptied using a catheter instead of the urine automatically emptying into an ostomy bag).
All have side effects that have to be considered, Laviana said. “It’s really a conversation with the patient about their expectations,” he said, as well as their comfort level with catheterization, and what they want to be able to do.
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Surgically, doctors have made advances such as more robotic surgeries that are minimally invasive as well as nerve- and muscle-sparing techniques to save sexual function, Laviana said.
He’s had patients scuba diving and surfing with an ostomy bag, which is often easier than the neobladder or pouch solutions that require catheterization either all the time or some of the time.
Whichever patients choose, “it’s a huge order from a psychosocial standpoint,” Laviana said. There’s a stigma around them, which is why he tries to connect new bladder cancer patients to more experienced ones. “This community that has formed here in Austin, when I see this community, it’s inspiring,” he said.
De La Garza became Dunlevy’s mentor and helped her learn tricks to better use the ostomy bag.
“It’s disgusting,” Dunlevy said. “I hate this bag. I hate it because I have to have it. I have to because I wanted to live.”
Dunlevy now has the hang of things with her bag and is back to stand-up paddle boarding. “I love to stay active,” she said.