Cancer involves abnormal cells growing uncontrollably, invading nearby tissues, and spreading to other parts of the body through metastasis.
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The management of bladder cancer is a lifelong commitment, characterized by intense surveillance and the management of functional sequelae. The high recurrence rate of non-muscle invasive disease and the complexity of urinary diversions in muscle-invasive disease mandate a rigorous follow-up schedule. Maintenance care is a multidisciplinary effort involving urologists, oncologists, wound, ostomy, and continence nurses (WOCN), and nephrologists.
For NMIBC, the “maintenance” phase often involves maintenance BCG therapy—periodic instillations given for up to three years to keep the immune system primed against recurrence. Surveillance cystoscopy is the primary tool, performed every 3 to 6 months initially, then annually. This constant monitoring can be physically uncomfortable and psychologically taxing (“scanxiety”), but it is essential for catching recurrences early when they are still treatable endoscopically.
For patients with urinary diversions, care focuses on stoma management and neobladder training. An ileal conduit requires the patient to master the application of ostomy appliances to protect the peristomal skin from urine irritation. Neobladder patients must learn to void by relaxing the pelvic floor and using abdominal pressure (Valsalva), as the new bladder does not contract like a muscle. They must also irrigate the neobladder to remove mucus produced by the intestinal segment, which can otherwise lead to obstruction or stones.
Survivorship care addresses the long-term impacts of treatment. Sexual dysfunction is common following cystectomy due to the removal of reproductive organs and potential nerve damage. Rehabilitation may involve phosphodiesterase inhibitors, vacuum devices, or counseling. Renal preservation is also paramount; the anastomosis (connection) between the ureters and the bowel diversion can scar (stricture) over time, leading to silent kidney obstruction. Periodic imaging and blood work monitor renal function and Vitamin B12 levels, as the terminal ileum used for diversions absorbs this vitamin.
Survivorship care addresses the long-term impacts of treatment. Sexual dysfunction is common following cystectomy due to the removal of reproductive organs and potential nerve damage. Rehabilitation may involve phosphodiesterase inhibitors, vacuum devices, or counseling. Renal preservation is also paramount; the anastomosis (connection) between the ureters and the bowel diversion can scar (stricture) over time, leading to silent kidney obstruction. Periodic imaging and blood work monitor renal function and Vitamin B12 levels, as the terminal ileum used for diversions absorbs this vitamin.
The altered urinary chemistry in diversions can lead to calcium leaching from bones to buffer the blood acidity, increasing the risk of osteoporosis. Maintenance care involves monitoring bone density and ensuring adequate calcium and Vitamin D intake. Furthermore, the chronic colonization of urinary diversions with bacteria (bacteriuria) is common; distinguishing between harmless colonization and active infection is critical to avoid unnecessary antibiotic use and resistance.
Biological and Regenerative Rehabilitation
The future of bladder cancer maintenance lies in molecular surveillance. Liquid biopsies detecting circulating tumor DNA (ctDNA) in plasma or urine are poised to revolutionize follow-up. Detecting molecular recurrence months before a tumor is visible on a CT scan could allow for early intervention with systemic therapy. This shift from reactive to proactive maintenance aims to intercept the disease at its microscopic roots.
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Maintenance BCG is a schedule of additional BCG treatments given after the initial six-week induction course. It typically involves three weekly treatments given at 3, 6, 12, 18, 24, 30, and 36 months. This protocol is proven to significantly reduce the risk of the cancer coming back or progressing to a worse stage.
Stoma care involves keeping the skin around the opening clean and dry, measuring the stoma to ensure the appliance fits actively (as the stoma size can change), and emptying the bag when it is one-third full to prevent leakage. Specialized nurses provide training, and eventually, it becomes a routine part of daily hygiene.
The neobladder is made from a piece of intestine, which naturally produces mucus to help food pass through. Even when used as a bladder, the tissue continues to produce mucus. This is normal, but patients need to drink plenty of water and sometimes flush the bladder with saline to prevent the mucus from blocking the urine flow.
If a large section of the end of the small intestine (terminal ileum) was used to create your urinary diversion, your body may no longer be able to absorb Vitamin B12 from food. Over time, your stores will run out, leading to anemia and nerve issues, so regular B12 injections or high-dose oral supplements are often necessary.
“Scanxiety” is the intense worry or fear that patients experience before undergoing follow-up cystoscopies or CT scans and while waiting for the results. It is a very real psychological side effect of cancer survivorship. Open communication with your doctor and support from patient groups can help manage this stress.
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