Questions to Ask About Bladder Cancer Treatment

This page is for people facing bladder cancer treatment and those helping them. It explains the main choices and the questions worth asking your care team.

One fact drives every bladder cancer decision. Has the tumor grown into the bladder muscle?

Non-muscle-invasive disease is treated through a scope passed into the bladder. Muscle-invasive disease means a much bigger decision about the bladder itself.

If the sample held no muscle, the report cannot answer that. NCI describes a second resection (scraping out tumor tissue through the scope) 2 to 6 weeks later. In one small series of 38 people whose first resection showed only surface or flat disease, the repeat found deeper invasion in about a third.

Treatment starts with a scope resection. Because most of these cancers come back after resection, NCI says a single dose of chemotherapy is often put into the bladder immediately afterwards. Mitomycin, epirubicin, thiotepa and pirarubicin are among the drugs studied for it. Whether you get one, and which, depends on your case, so ask your team.

What comes next depends on risk. Low-risk tumors may just be watched. NCI describes intravesical BCG (a weakened germ put directly into the bladder to rouse the immune system) as the treatment of choice for reducing the risk of progression, used mainly where that risk is intermediate or high. The recurrence benefit in the pooled data came only where BCG carried on periodically for at least a year.

Maintenance matters. NCI pooled nine trials. Where BCG included maintenance, the risk of the cancer returning fell by 32%.

Two newer drugs also go into the bladder. They are nadofaragene firadenovec and nogapendekin alfa inbakicept. Ask if either fits your case.

Radical cystectomy (surgery to remove the whole bladder) is NCI's standard option for stage II and stage III. It takes the bladder, nearby tissue and pelvic lymph nodes.

NCI notes that in studies, survival was better when more lymph nodes were removed, though it is not known whether removing more nodes is itself the reason. That is a fair thing to ask your surgeon about.

Bladder preservation is the other route. NCI sets out the steps. A repeat resection comes first. Then chemotherapy with radiation, to about 40 Gy (gray, the unit used to measure radiation dose). Then a biopsy. If it is clear, radiation is completed to about 65 Gy.

NCI reports a trial of three cycles of chemotherapy before surgery. The comparison group had surgery alone.

Five-year survival was 57% with chemotherapy first, and 43% without. NCI says this difference was of borderline statistical significance. No deaths came from the chemotherapy, and problems after surgery were no more common or severe.

Kidney function is one of the things that decides whether cisplatin-based chemotherapy is possible. For example, one trial NCI reports required a measure called creatinine clearance of at least 40 mL/min. Ask for your number.

• Did my resection sample include bladder muscle?
• Do I need a repeat resection before we choose anything?
• Is the tumor low grade or high grade, and is carcinoma in situ (flat, early cancer in the bladder lining) present?
• Did I get a chemotherapy instillation right after my resection?
• If BCG is planned, does it include maintenance, and for how long?
• If it is muscle-invasive, am I a candidate for bladder preservation?
• How many lymph nodes will come out, and how many of these operations do you do a year?

Urinary diversion is part of the operation. NCI lists options. Urine can be redirected into the colon. Or it can drain through an opening in the abdomen, called a stoma, into a bag.

A neobladder (a new bladder built from a piece of bowel) is another route. Ask what each choice means for sleep, travel, sex and body image. Ask before the date is set.

Bladder treatment has a few problems that run on the clock.

• Call 911 or go to an emergency department if you cannot pass urine at all, or you are passing large blood clots and the bleeding will not settle. NIDDK says being suddenly unable to pass urine needs emergency treatment right away, because the bladder has to be drained. Do not drive yourself.
• Call 911 or go to an emergency department if you have shaking chills, a high fever, and feel suddenly and badly unwell in the days after a BCG treatment. BCG uses live bacteria, and on rare occasions the infection spreads through the body. Say you have had BCG when you arrive. Do not drive yourself.
• Call your cancer team immediately if your temperature reaches 100.4°F (38°C) or higher while you are on chemotherapy. The CDC calls fever during chemotherapy a medical emergency, because a low white cell count leaves an infection unopposed. Do this day or night. If no one picks up soon, go to an emergency department and say you are on chemotherapy.
• Call your care team right away if after BCG you have burning or pain when you urinate, a strong or frequent urge to go, blood in your urine, or a rash. MedlinePlus lists these as reasons to call immediately. Also report fever, chills, or flu-like feelings after a BCG treatment.
• Call your care team the same day if your urine turns cloudy or foul-smelling, the flank on one side starts to ache, or a new stoma or neobladder is draining less than you were told to expect.

Keep going: Cancer Staging, Cancer Treatment Overview, Clinical Trial vs Standard Treatment, and Questions to Ask Your Doctor.

• NCI PDQ - Bladder Cancer Treatment (Patient Version)
• NCI PDQ - Bladder Cancer Treatment (Health Professional Version)
• CDC - Fever and cancer treatment
• MedlinePlus - BCG Live (Intravesical)
• NIDDK - Urinary Retention