Dorothy De La Garza had frequent urinary tract infections. Then she was told she had “an overactive bladder”.
“Everyone assumes a woman runs away because she’s old,” the 78-year-old from Austin said.
After years of taking intermittent antibiotics and seeing a urologist and her GP 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 sometimes had strange pains when she urinated. 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 appeared in her urine and she was sent to a urogynecologist, who ordered a CT scan and a cystoscopy (an endoscope that goes into the bladder).
“Women don’t get bladder cancer,” she recalled 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, estimates the American Cancer Society.
Bladder cancer is the sixth most common cancer in the United States.
Typical symptoms of bladder cancer include:
- Blood in the urine
- Having to urinate frequently
- Pain when urinating
- Back ache
- Pelvic pain
While it’s true that about three-quarters of cases occur in men, it’s a stereotype that women don’t get bladder cancer, said Dr. Aaron Laviana, assistant professor and Livestrong member. Cancer Institutes at the University of Texas Dell Medical School. Often women are misdiagnosed as having a urinary tract infection or a reproductive problem.
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When 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 removing the bladder, he said.
De La Garza’s and Dunlevy’s cancers had both progressed to the muscle layer, which meant they needed chemotherapy and then had their bladders removed.
“I’m on a mission,” De La Garza said. She wants more women to not just accept that they have urinary tract infections or that incontinence is normal. “Everyone is talking about colon, prostate and ovarian cancers,” she said, but nobody is talking about bladder cancer.
“It doesn’t get the press and attention, but it affects so many people,” Laviana said.
A desert of bladder cancer care
Before 2020, people with bladder cancer who needed bladder removal surgery often traveled to San Antonio, Houston, or Dallas for treatment.
“It was a health care desert for urologic oncology,” said Laviana, who came to Austin in August 2020.
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“We’re making it a center of excellence in bladder cancer,” he said of the Livestrong Cancer Institutes.
Surgeries to remove the bladder and create a new path for urine are complex, he said. They need someone who is trained in the stock market and has seen a lot of these surgeries, Laviana said.
Post-surgery care also requires a specialist, he said. “The marathon starts after the operation,” he said.
After the bladder is removed, doctors create another type of urine collection system from part of the small intestine in what is called either a neobladder (an inner bladder) or an ileal conduit ( a small pouch that connects the ureters to an external stoma sac), or a pouch system like an Indiana pouch (a larger pouch inside the body which is then emptied using a catheter instead of the urine automatically empties into an ostomy bag).
All have side effects that need 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 the catheterization and what they want to be able to do.
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Surgically, doctors have made advances such as more minimally invasive robotic surgeries as well as nerve- and muscle-sparing techniques to save sexual function, Laviana said.
He has had patients do scuba diving and surfing with an ostomy bag, which is often easier than neobladder or pouch solutions that require catheterization all the time or once in a while.
Whichever patients choose, “it’s a huge ordeal from a psychosocial perspective,” Laviana said. There is a stigma around them, which is why he tries to connect new bladder cancer patients with more experienced patients. “This community that’s formed here in Austin, when I see this community, it’s inspiring,” he said.
De La Garza mentored Dunlevy and helped her learn tips on how 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 his bag and is back to stand-up paddling. “I like to stay active,” she said.