Bladder Cancer Basics: A Caregiver’s Guide

Providing care is a relentless balancing act, combining medical management and emotional support

Paul Wynn,

AARP

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Published November 26, 2025

Irv and Eileen Cherny at their home in Memphis, Tennessee.

Houston Cofield

On Thanksgiving Day 2016, Irv Cherny expected a quiet holiday filled with family, gratitude and his favorite meal of the year made by his wife, Eileen. Instead, he found himself doubled over in pain, unable to urinate, and hours later in a Memphis emergency room watching a catheter bag fill with blood. When the ER doctor looked up and told him he likely had tumors growing in his bladder, Cherny’s life changed instantly.

Twenty-four hours later, after emergency surgery, the diagnosis was confirmed: Bladder cancer, with seven to eight tumors that had gone undetected for years. As a retired dentist, Cherny prided himself on having annual physicals and staying healthy and active, including running with his wife in several half-marathons. “I had no warning at all — no symptoms and no pain,” says Cherny, now 72. “I walked into the ER because I couldn’t pee, and I walked out knowing I had bladder cancer.”

Karen Sachse, 69, an oncology nurse from Sterling, Virginia, spent two years seeking answers for persistent urinary symptoms that were repeatedly dismissed as routine infections, a delay she now knows is common among women with bladder cancer. Despite seeing a urologist, the blood in her urine was attributed to menopause, and no one performed a cystoscopy, a procedure in which a thin, flexible camera is inserted through the urethra to look directly inside the bladder.

Her diagnosis came by accident in 2010 at age 54, when a vaginal ultrasound for suspected gynecologic issues revealed a tumor in her bladder. Treated initially with standard-of-care therapy, she suffered recurrences and eventually sought a second opinion at Johns Hopkins, where specialists determined her cancer had spread. There, she received anti-cancer therapy that was delivered directly into the bladder. Sachse has remained cancer-free since 2014.

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Inside bladder cancer: What you need to know

Bladder cancer is on the rise, with new diagnoses expected to reach nearly 85,000 in 2025, according to the American Cancer Society. Bladder cancer most commonly presents with blood in the urine, either visible or microscopic. Blood in the urine can signal many conditions, including common urinary tract infections (UTIs), especially in women, and kidney stones. “However, any blood in the urine must be evaluated, because women in particular often experience dangerous delays in diagnosis when symptoms are dismissed as recurrent UTIs,” says Dr. Sam S. Chang, professor of urology at Vanderbilt University Medical Center in Nashville.

Diagnosis generally relies on urinalysis, imaging such as CT scans and, most critically, an in-office flexible cystoscopy. If a suspicious lesion is seen, the next step is a TURBT (transurethral resection of bladder tumor), a surgical procedure performed under anesthesia to remove the tumor, determine its type and assess its depth.

Roughly three out of four bladder cancer cases are non-muscle-invasive, meaning the cancer is confined to the inner layers of the bladder. These are typically treatable but require ongoing surveillance because they frequently recur. The remaining 25 percent of cases are muscle-invasive, posing far greater risk and often requiring more aggressive treatment, such as bladder removal or systemic therapy. There is no reliable blood biomarker for detecting bladder cancer; urine-based tests exist but cannot replace cystoscopy.

How bladder cancer is treated

For high-risk, non-muscle-invasive bladder cancer, the first-line treatment is a live bacterium, bacillus Calmette-Guérin, more commonly called BCG, to stimulate the immune system. BCG, which is delivered directly into the bladder, has for decades been the preferred first-line treatment option for non-muscle-invasive bladder cancer. However, approximately 30 to 40 percent of patients do not respond to BCG, and about half of those who initially respond eventually experience a recurrence of their cancer.

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Historically, if BCG fails, surgical bladder removal, called a cystectomy, is the next step.

There are three options for urinary diversion; two are internal pouches. One requires intermittent urine drainage with a catheter, called a cutaneous pouch; the other is a neobladder, a surgically created replacement made from a section of a person’s own intestine. Another option is an external ileal conduit, which requires an ostomy bag that attaches to the skin to collect urine. Beyond the constant hassle of managing the pouch, including frequent changes and fear of leaks, bladder removal takes a heavy mental toll on self-confidence and independence. To learn more about bladder health, after 50, check out this comprehensive AARP guide.

In Cherny’s case, he underwent multiple surgeries and three full courses of BCG, but his tumors continued to grow back. With options dwindling and bladder removal becoming an increasingly real possibility, Cherny sought a second opinion at Vanderbilt with Dr. Chang. There, he underwent two additional clinical trials, both of which failed to stop tumor regrowth.

Photo collection of Cherny family memories and milestones.

Houston Cofield

With Chang’s suggestion, Cherny enrolled in a new clinical trial combining BCG with an investigational immunotherapy. The treatment, now FDA-approved as Anktiva, was delivered directly into the bladder once a week for six weeks along with BCG, followed by additional maintenance cycles. Unlike systemic chemotherapy that can destroy immune cells that normally fight cancer, Anktiva stimulates natural killer and T cells to attack tumors and build immune memory to fight the cancer if it recurs.

For the first time since his diagnosis, Cherny’s exams showed no new tumors. On top of that, he remained tumor-free throughout the full course of treatment and continued in long-term follow-up for nearly three years with sustained remission and no major side effects from treatment. The therapy likely saved Cherny’s bladder, but it also restored his peace of mind and daily life. He remained active throughout treatment and even started running again, and has required no hospitalizations for complications.

Impact of bladder cancer on caregivers

After Sachse survived her own cancer journey, her advocacy deepened when her husband, Roger, was diagnosed with aggressive muscle-invasive bladder cancer in 2016 after spotting blood in his urine. He underwent chemotherapy, bladder removal and construction of a neobladder.

A rare spinal cancer metastasis led to his death the following year at age 59. Their unique experience propelled Sachse to become a devoted bladder cancer advocate. She continues working as a nurse navigator for Inova’s Life with Cancer program in Alexandria, Virginia, leads virtual bladder cancer support groups, serves on the board of a national patient group, the Bladder Cancer Advocacy Network, and urges caregivers to:

Push for second opinions, expert evaluation and early cystoscopy when symptoms persist.
Make sure loved ones know about all treatment options. Bladder removal is often offered as one of the first options, but there are other therapies to consider.
Connect with the bladder cancer community for education and peer support so they feel less isolated and overwhelmed and have a safe place to ask questions and seek information.

Caregivers often feel stressed out from managing and getting loved ones to frequent medical appointments. Non-muscle-invasive bladder cancer — the most common form — requires regular cystoscopies, treatments like BCG and occasional surgeries such as TURBT to remove recurring tumors. Each of these steps can mean hours in clinics, transportation needs, juggling work schedules and days spent managing recovery at home.

“I tried to stay positive and lift him up when he felt low,” recalls Eileen Cherny. “You tell yourself to be strong, but inside you’re thinking: What happens next? What happens if he loses his bladder? What if the cancer spreads?”

Caring for someone with bladder cancer can be a long and demanding journey because it has one of the highest recurrence rate of any cancer, says Meri-Margaret Deoudes, CEO of the Bladder Cancer Advocacy Network (BCAN) in Bethesda, Maryland. “Treatments, procedures and follow-up appointments often extend for years, requiring caregivers to juggle multiple roles: advocate, scheduler, driver, record-keeper, interpreter, financial manager and emotional anchor.”

With the bladder cancer now in remission, the Chernys have returned to running.

Houston Cofield

Post-procedure care adds another layer. Patients may go home with temporary catheters, experience bleeding or struggle with urinary urgency and leakage. Caregivers often assist with bathroom accidents, laundry, wound care and managing discomfort — all of which can be exhausting and impact the quality of life within the household.

Helping loved ones over the long haul

For caregivers of individuals who undergo bladder removal, the responsibilities grow even more complex: learning how to manage a urostomy, helping monitor for infections or complications, and supporting a loved one dealing with changes to body image and independence.

As an oncology nurse, bladder cancer survivor and caregiver, Sachse brings a uniquely informed perspective to what it truly means to be part of a support network. “As a caregiver, you become your loved one’s voice,” she says. “You have to push for answers, seek second opinions and never assume the first explanation is the right one.”

However, patients must also be empowered to advocate for themselves and maintain a deep understanding of their condition and the range of treatment pathways available. Knowing the alternatives, especially those that may preserve bladder function, is crucial for shared decision-making and ensuring the best possible outcome, adds Sachse.

Recurrence of bladder cancer is common, and the cycle of surveillance and treatment can create ongoing anxiety for both patients and caregivers, says Sachse. The possibility of disease progression and, for some, the prospect of bladder removal and life-changing adjustments like a urostomy or an internal pouch can be overwhelming.

“The ongoing surveillance needed to monitor bladder cancer adds additional stress and anxiety,” explains Deoudes. “Caregiving responsibilities for loved ones with bladder cancer rarely end after treatment. This long-term commitment can affect work, finances, family life, and personal well-being.”

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.

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