WIt felt cruel irony that Jodi Byfuglin (56), was diagnosed with bladder carcinoma. Byfuglin lost her parents in her 50s to cancer, and she had been a single mom of two children. “I promised that I would not leave them,” Byfuglin says.
Bladder cancer is sixth most prevalent cancer in America, with older men at greatest risk. The American Cancer Society estimates that about one-tenth to five percent of bladder cancer cases will occur in individuals younger than 55. An estimated 19,480 women are expected to be diagnosed with the disease in 2022. “I had no idea about bladder cancer,” Byfuglin says. “It’s like a silent killer; it goes from zero to 1,000 really quick.”
For high-grade or muscle-invasive bladder cancer, urologists perform a radical cystectomy in which they remove the patient’s bladder and some of the surrounding organs. This can involve the prostate and seminal vessels in men; it is possible for women to remove the uterus, ovaries and fallopian tubes.
Doctors can then devise a way to allow patients to urinate through one of three methods: the Indiana pouch (or neobladder), urostomy or neobladder.
The vast majority of patients choose the urostomy, in which surgeons create a stoma—a beefy red spout protruding from the belly—so that urine can flow from the kidneys, through an intestinal conduit, and out the body. The stoma has a pouch that is clear and oval-shaped. It must be empty every 4 to 6 hours, changed once a week. The urostomy, which is the shortest, most straightforward and least complicated of the three possible options, has the lowest potential for complications.
Byfuglin was also awarded the Neobladder, which is the most widely used urinary diversion. Dr. Anne Schuckman, an associate professor of clinical urology at the University of Southern California, took out two feet of Byfuglin’s intestines, fileted it open, and formed a sphere that could collect urine inside her pelvis. The neobladder, which is typically recommended for healthier, younger patients, offers the most natural anatomy. Patients who experience incontinence initially may need to self-catheterize to empty their neobladder. “I really didn’t want something external,” Byfuglin says. “It’s not that I’m vain, but I didn’t want people to see I have cancer. Or even to remind myself.”
Indiana pouch, which combines aspects of the urostomy with the neobladder is the last option. A surgeon uses a bit of intestine as a guide to build a pouch inside the abdomen. Then, they connect the pouch to the skin and create a toma. Unlike the urostomy, urine doesn’t naturally flow out this stoma, so patients need to insert a soft thin plastic tube into their Indiana pouch to relieve themselves. Although these patients have the highest urine control satisfaction, the Indiana pouch is the least common diversion because “somebody has to be willing to catheterize every three to four hours for the rest of their life,” Schuckman says.
A radical cystectomy and any form of urinary diversion are lifesaving procedures. But recovery can be difficult given the 35% rate for complications in hospital according to 2021 reviews of 66 clinical studies. British Medical Journal Open. In fact, Schuckman usually tells patients “to give themselves a year to really feel like they’re back at their physical baseline.” Although creating a new normal takes time, patients and health care professionals have tips for navigating the key challenges around living with radical cystectomy.
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Image and mental health
An article published in 2018. CancerAfter radical cystectomy, more than half the patients diagnosed with bladder cancer had a mental disorder such as anxiety or bipolar. In particular, “there’s quite a bit of depression early on,” says Dr. Bruce Kava, professor of urology at the University of Miami.
Allen Beckett (North Carolina), 71 years old, underwent a radical cystectomy 8 years ago. He now supports the Bladder Cancer Advocacy Network. He’s often seen how radical cystectomy can damage one’s sense of self. Some people find it a major blow to their self-esteem, as they must put their lives in order to heal. Some people struggle with accepting the changes in their bodies and having to live with a plastic pouch 24 hours a day. “They got over the physical part of it, but they can’t get over the mental part,” Beckett says.
Beckett explains that he overcame his own struggles when “my brain kicked in and said, ‘you’re cancer-free, you’re alive, and you probably got several years ahead of you.’” While refocusing can help, he admits that adapting to his new body took a while. “Time is your ally and your friend,” he advises his fellow survivors. Beckett has switched to darker, patterned shirts in order to conceal his stoma. Beckett says he doesn’t feel self conscious wearing suits because he can only wear a suit. Stomba protectors, support bands and bathing suits are all options to help cover the urostomy. This makes patients more confident, discreet and fashion-forward. “Most people can’t even tell,” Beckett says.
Patients who are still struggling with mental health can turn to WOC (wound-, ostomy and continence) nurses for support. Counselling, counseling, as well as patient support groups may be helpful. In fact, Beckett was recently chatting with another radical cystectomy patient through BCAN’s Survivor to Survivor program, talking through his body image struggles. Beckett advised Beckett to get professional help.
Kava states that mental health problems are normal following major surgeries like radical cystectomy. The health care team is available to help patients. “We reassure them that life is not about where you pee or how you pee; it doesn’t define you in any way.”
Issues with your device A new method of urinating
Tami Walker is a WOC nurse at the University of Michigan, and she sees her job as not only treating patients’ physical wounds, but also rebuilding their self-esteem. “The surgeon goes through a lot of the clinical part of it,” Walker says, “but not how to live every day.” Although Walker counsels some neobladder patients pre-operatively, she spends most of her time helping patients with their urostomies: Walker introduces them to different pouching systems; shows them how they attach to the stoma, empty out, and need to be replaced; and provides direct care for complications.
“General leakage from not having the proper fit is the biggest problem,” she says. The adhesive on urostomy pouches doesn’t always stick well to a patient’s abdomen, especially as their body contour shifts in the first eight weeks after surgery.
Nikki Saltzburg (48-year old Florida resident) still hasn’t figured out her stoma after months of her surgery. She carries with her an anti-adhesive aerosol, stencil, scissors, sticky paste, and a pair of scissors when she needs to change her urostomy pouch. “It still takes me a while, and the challenge is the stoma doesn’t stop leaking urine,” Saltzburg says, “so urine can be running down your stomach or spraying somewhere.”
Because leaking urine can result in rashes, fungal infections, and even lumps, she must be careful. Another common problem is a hernia, which causes the intestinal organs to bulge from the abdomen.
Although there is a greater number of devices available for Neobladder patients than in the past, Byfuglin has to catheterize her own urethra, just like 10% of men or 50% of women. As such, Byfuglin always tries to be mindful in new places: “It’s like when you have a toddler and you just potty trained him, and you have to think ahead of time where the restroom is.” Because the neobladder is not connected to the brain, patients don’t have a typical sensation of “fullness,” rendering accidents common, especially while sleeping. This incontinence can be treated with nighttime drainage bags and pelvic floor therapy.
Walker states that patients take on average three months to get used to urinating differently. Beckett, who has lived with urostomy almost a decade, used to experience accidents up to 4 times per month. He now can live six weeks with no accidents. The difference for Beckett was finding the device that worked best for him. “It stays on, it doesn’t leak, and it’s lightweight,” Beckett says.
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From physical activity to working to traveling to intimacy, radical cystectomy can disrupt a person’s life, at least in the short term.
Saltzburg is paraplegic and has competed on the U.S. national wheelchair tennis teams. She would love to go back to playing recreationally but is “scared to right now.” Beyond feeling weak, Saltzburg’s tennis chair strap goes across her abdomen and could put pressure on her stoma.
Walker emphasizes that, while patients initially feel like they can’t return to their day-to-day activities, they can eventually do almost everything they used to. One of her patients worried that a urostomy would end his Lake Michigan boating adventures, but he’s now back on the water, active as ever. Robert Schreiber (69), a BCAN volunteer flew to Oregon from Massachusetts three months after his radical cystectomy in order to view the eclipse. As Beckett says, “There’s nothing you can’t do unless you’re afraid to do it.”
Walker says that being prepared is one of the best things you can do to adapt to radical cystectomy. When traveling, it’s important to bring plnety of easily accesible supplies, she says, because patients need to have their urostomy pouches, catheters, and other critical supplies within reach. “Bring double what you normally would need.”
It is a smart idea to bring a backpack with you for everyday trips. Byfuglin discovered this the hard-way when she went out on a short walk and left all of her catheters behind. “I couldn’t get home,” Byfuglin says. “It was the biggest panic of my life!” Her advice for other radical cystectomy patients? “You have to plan ahead.”
However, even with all this optimism and planning, it isn’t easy to get back on track. It took eight months for Byfuglin to return to work, but she was almost immediately laid off because “they felt like I couldn’t do my job anymore.” For many patients with bladder cancer, there’s also a constant veil of fear that their tumor will come back. “You have to give yourself grace to not be okay,” Byfuglin says. “I just keep using the word ‘living.’ At least I’m here.”
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