WAsthma Jodi Byfuglin, 56, was diagnosed with bladder cancer, which feels ironic. Byfuglin lost both parents to cancer at the age of 50, and as a single mother of two, she is all her children have left. “I promised I wouldn’t leave them,” Byfuglin said.
Bladder cancer is the sixth most common cancer in the United States, and older men are most at risk. But about 1 in 10 cases are in people under 55, and an estimated 19,480 women will be diagnosed with bladder cancer by 2022 (compared to about 61,700 men), according to the American Cancer Society. Ky. “I knew nothing about bladder cancer,” Byfuglin said. “It’s like a silent killer; it goes from 0 to 1,000 really fast. “
For high-grade or muscle-invasive bladder cancer, urologists perform a radical cystectomy, in which they remove the patient’s bladder and some surrounding organs. In men, this may include the prostate and seminal vesicles; In women, the ovaries, fallopian tubes, and uterus.
Surgeons then created a new way for patients to urinate through one of three methods: ureterectomy, cystectomy, or Indiana pouch.
Most patients opt for a ureterectomy, in which the surgeon creates a stoma – a muscular red hose that protrudes from the abdomen – so urine can flow from the kidney, through the intestinal tract, and through the ileum. out of the body. Urine flows into a clear oval bag attached to the drain hole, which should be cleaned every four to six hours and changed twice a week. Of the three options, ureterectomy is usually the shortest and simplest surgery, with the fewest potential complications.
Byfuglin received the second most common urinary diversion, the neoplasm. Anne Schuckman, an associate professor of clinical urology at the University of Southern California, removed the legs of Byfuglin’s intestine, opened it, and formed a sphere that could collect urine inside her pelvis. . Often recommended for younger, healthier patients, the neoplasm provides the closest thing to normal anatomy, but patients initially struggle with urinary incontinence and may have to self-intubate. their neocystic catheter for complete emptying. “I really don’t want something outside,” Byfuglin said. “It’s not like I’m being vain, but I don’t want people to see that I have cancer. Or even to remind myself.”
The Indiana pouch is a last resort, combining aspects of both ureterectomy and bag neoplasia. Surgeons use a piece of intestine to create a collection tank inside the abdomen but then connect the pouch to the skin to create a stoma. Unlike a urethrotomy, urine doesn’t naturally drain out of this stoma, so patients need to insert a thin, flexible plastic tube into their Indiana bag to release it on their own. Although these patients have the highest satisfaction with urine control, the Indiana pouch is the least common diversion because “someone has to be willing to have a urinary catheter inserted every three to four hours during the rest of their lives,” said Schuckman.
Radical cystectomy with any urinary diversion is a life-saving procedure, but recovery can be difficult due to an in-hospital complication rate of 35%, according to a 2021 review of 66 studies. save in Open British Medical Journal. In fact, Schuckman often tells patients to “give yourself a year to really feel like they’re back to their baseline.” While creating a new normal takes time, patients and healthcare professionals alike have tips for addressing the key challenges surrounding living with radical cystectomy.
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Mental health and body image
A 2018 study published in Evil found that more than half of bladder cancer patients were diagnosed with a mental health condition, such as bipolar, worry, or substance use disorder, after radical cystectomy. In particular, “there’s quite a bit of depression early on,” said Dr. Bruce Kava, a professor of urology at the University of Miami.
Allen Beckett, 71, of North Carolina, had a radical cystectomy eight years ago and now volunteers with the Bladder Cancer Advocacy Network (BCAN). He often finds that radical cyst removal can damage a person’s sense of self. For some, it causes a disturbance to their independence as they have to pause their lives to recover. Others struggle to accept major changes to their bodies, and with urology surgery, they have to wear a plastic bag 24/7. “They got through the physical part, but they couldn’t get over the mental part,” says Beckett.
Beckett explains that he overcame his own struggles when “my brain kicked in and said, ‘you don’t have cancer, you’re alive, and you could be a few years ahead of you'”. Adjusting to his new body took some time. “Time is your ally and your friend,” he advised the survivors. Beckett now wears darker patterned shirts to help cover the hole and says he only feels self-conscious when he wears a vest. Catheter guards, support bandages, underwear, bathing suits, and other specialized clothing can cover the urethrectomy bag and help the patient feel private, confident, and fashionable. “Most people can’t even speak,” Beckett said.
For those who continue to struggle with their mental health, patient support groups, WOC (wound, surgical) nurses and counselors can all play an important role. In fact, Beckett recently chatted with another radical cystectomy patient through BCAN’s Survivor program, chatting through his body image struggles. At times, informal counseling from friends can help people adjust, but ultimately Beckett advises him to seek professional help.
Kava says mental health struggles are completely normal after a major surgery like a radical cyst removal, and the healthcare team is always there to support the patient. “We assure them that life is not where you pee or how you pee; it does not define you in any way. “
Equipment problems and pee in a new way
Tami Walker is a WOC nurse at the University of Michigan, and she sees her job as not only healing patients’ physical wounds but rebuilding their self-esteem. “Surgeons go through a lot of the clinical parts of it, but not how to live every day,” says Walker. Although Walker has counseled several cystectomy patients prior to surgery, she spends most of her time helping patients with their cystectomy: Walker introduces them to other bag placement systems. together; show them how they attach to the stoma, run out and need to be replaced; and provide direct care for complications.
“General leakage due to non-conformance is the biggest problem,” she said. Adhesives on urology bags do not always adhere well to a patient’s abdomen, especially as their body contour changes during the first eight weeks after surgery.
Months after the surgery, Nikki Saltzburg, 48, of Florida, is still trying to figure out how the tumor works. Every time she changes the urethroscope, she brings a toolbox of supplies into the bathroom: a non-stick spray to remove the old bag, stencils, and a pair of scissors to cut a hole in the new bag, a adhesive tape to attach the tracheal bag, and a hand fan to dry the skin. “It still took a while for me, and the challenge is that the stoma doesn’t stop leaking urine, so the urine can either go down your stomach or spit somewhere,” says Saltzburg.
You need to be careful because leaking urine can cause rashes, lumps and fungal infections. Other common problems include Urinary tract infectionshernias where intestinal organs bulge out of the abdomen, and intestinal symptoms such as bloating and diarrhea.
Although there are fewer devices available to patients with fibroids, Byfuglin, like 10% of men and up to 50% of women, must self-catheterize the urethra to fully heal on its own. Therefore, Byfuglin always tries to be mindful of new places: “It’s like when you have a toddler and you just potty train him, and you have to think ahead where the toilet is.” Because the neoplasm is not connected to the brain, the patient does not have a typical feeling of “fullness”, leading to frequent accidents, especially during sleep. Experts say pelvic floor therapy, pads and nighttime drainage bags can help with such incontinence.
Walker says it takes an average of three months for patients to become comfortable with the new way of peeing. Beckett has been living with urological surgery for nearly a decade now, and initially, he used to have accidents three to four times a month. Now, he can go six weeks without one. For him, the difference was finding the right equipment for his body. “It still works, doesn’t leak and is lightweight,” says Beckett.
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Back to normal state
From physical activity to work, travel to intimacy, radical cystectomy can disrupt a person’s life, at least in the short term.
Saltzburg, who was paralyzed since childhood, competed on the US wheelchair tennis national team. She’s desperate to get back into entertainment but is “scared right now.” In addition to feeling weak, Saltzburg’s tennis chair straps wrapped around her abdomen and could put pressure on her tumour.
Walker emphasizes that, while patients initially feel like they can’t return to their daily activities, they can eventually do almost anything they’re used to. One of her patients was worried that a urologic surgery would end his Lake Michigan sailing adventure, but he is now back on the water, as active as ever. Another BCAN volunteer, Robert Schreiber, 69, flew from Massachusetts to Oregon three months after radical cystectomy to view the eclipse. As Beckett said, “There’s nothing you can’t do unless you’re afraid to do it.”
According to Walker, one of the best ways to adapt to life with radical cystectomy is to be prepared. She said: “When traveling, it is important to carry items that are easy to reach as patients need to have their ureteroscope bags, urinary catheters and other important items within reach. “Gives double what you normally need.”
For everyday outings, you can also bring a carry bag. Byfuglin learned how hard it was when she stepped outside for a few hours, leaving all her catheters behind when a fire broke out in Ventura County, California. “I can’t go home,” Byfuglin said. “It was the biggest panic of my life!” What is your advice for other radical cystectomy patients? “You have to plan ahead.”
Of course, despite all the planning and optimism, the path to normal is far from linear. It took Byfuglin eight months to return to work, but she was almost immediately fired because “they felt like I couldn’t do my job anymore”. For many bladder cancer patients, there is always a veil of fear that their tumor will return. Byfuglin says: “You have to give yourself grace to not be okay. “I just keep using the word ‘live’. At least I’m here.”
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