So you’ve got bladder cancer (or maybe someone you know does). And you’re looking for the best, quickest route back to good health. There are two main types of treatment: surgery and medication. Surgery is often the first step after the initial diagnosis. After a urologist performs the operation, the patient works with the urologist or a urologic oncologist to figure out if further treatments, such as chemo or immunotherapy, are necessary to help kill remaining cancer cells and prevent tumors from recurring, which is a big possibility with bladder cancer—the rates of recurrence are between 70% to 80%, making it one of the most expensive cancers to treat.
The good news is that there are many new medications for bladder cancer patients that weren’t around just a couple of years ago. And if one of them isn’t working—the tumor isn’t shrinking or keeps recurring or the side effects are taking a toll—your doctor can try something else, whether that means switching from immunotherapy to chemo or vice versa.
Because most people with bladder cancer need some sort of surgery to remove the tumor (or tumors), we'll start there. But first, let’s go over some bladder cancer basics.
We went to some of the nation's top experts in bladder cancer to bring you the most up-to-date information possible.
Hooman Djaladat, M.D.Urologic Oncologist and Associate Professor of Clinical Urology
Philippe Spiess, M.D.Genitourinary Oncologist and Assistant Chief of Surgical Services
Christopher M. George, M.D.Medical Oncologist
What Are the Stages of Bladder Cancer, Again?
Bladder cancer has two categories. In non-invasive bladder cancer (NMIBC) tumors are located only on the inner lining of the bladder and haven’t spread into the bladder’s other layers. Muscle-invasive bladder cancer (MIBC) means tumors have grown deeper into the muscle and fatty tissues. Tumors are also classified as low-grade (those that grow slowly) or high-grade (ones that grow faster).
After you’ve been diagnosed, your doctor will determine the stage, or how far into the bladder or other parts of the body the tumor(s) have spread. Doctors use these letters and numbers:
T (stands for tumor)—only located in the bladder
N (stands for node)—has spread outside the bladder to nearby lymph nodes
M (metastasis)—has spread to distant organs like the liver and lungs
0a—Non-invasive tumors in the lining that can be removed pretty easily
0is—Carcinoma in situ (another type of tumor that shows up as red patches and is considered aggressive)
1—The tumor has spread into the bladder’s connective tissue (its second layer).
2—The tumor has spread into the muscle (the third layer).
3—The tumor has spread into the fatty tissue surrounding the bladder and kidneys.
4—The tumor has spread into nearby organs.
Then the doctors combine the letters and numbers to make it easier to come up with a treatment plan. So, for example, T1 N0 M0 means the tumor is still in the bladder’s lining and there are no signs of cancer in the lymph nodes or other organs.
What Are the Surgical Treatments for Bladder Cancer?
There are two types of surgery for bladder cancer: Transurethal resection of bladder tumor (TURBT) and a cystectomy, which involves removing your bladder. Most people, though, start with TURBT—urologists usually need to cut the tumor or tumors out before they can biopsy them, though doctors can sometimes tell by looking at the tumor how aggressive it can potentially become.
The majority of bladder cancer tumors are non-invasive (known as non-muscle invasive bladder cancer or NIMBC)—they’re located on the inner lining of the bladder, called the urothelium, and haven’t spread into the other layers of the bladder wall. Even so, they need to come out. If they are small enough (less than a millimeter), the doctor will burn them off in the office, saving you a trip to the OR. But most people have surgery in the hospital as an outpatient.
You’ll be given anesthesia (either general or spinal) before the urologist puts a probe called a resectoscope through your urethra (the duct that allows pee to travel out of the bladder). The resectoscope has an electric wire loop that cuts the tumor(s) into small pieces and scrapes out surrounding tissue. The procedure usually takes less than an hour.
After scraping all the visible tumors, the doctor cauterizes the area to stop the bleeding.
Sometimes, doctors will inject a chemo drug called Gemzar (gemcitabine) into the bladder via a catheter right after the operation, a strategy that’s been shown to reduce the risk of recurrence by 20% in patients with non-aggressive (or low-grade, as doctors call them) tumors. This isn’t standard procedure, though, so talk to your urologist about this.
Recovery basics: Most people go home after the anesthesia wears off, though sometimes you are kept overnight at the hospital. You usually have to take it easy for a couple of weeks afterward—no jogging or sports like tennis. You can walk, as long as you don’t overdo, and no heavy lifting. You’ll need to drink plenty of water and take an antibiotic to prevent infection.
Normal symptoms to expect after TURBT:
Blood in your urine
Pain when you pee
Having to go more often than normal
Leaking (it can help to wear protective pads)
Symptoms that are NOT normal after TURBT:
Passing blood clots
Not being able to pee
Call the doctor ASAP if any of these happens to you.
Follow-up treatment: This depends on the pathology report. If the tumor was superficial, (under three centimeters), and not aggressive, you’ll need a follow-up cystoscopy three months after the surgery, preferably via a blue-light cystoscopy instead of the standard white-light cystoscopy. These probes use different wavelengths and filters that can help urologists see smaller tumors more easily.
One study found that they were associated with lower rates of recurrence. Then your doctor will determine a cystoscopy schedule after the first one, since you’ll need to be monitored fairly closely for the first couple of years.
If the tumors are larger, they’re more aggressive, or they’ve come back, you will probably need chemotherapy or immunotherapy medications as well as more TURBTs. If the tumors continue to recur despite the meds, or progress to another stage (stage 2 and 3), you will probably need to get your bladder removed, which is what we’ll talk about next.
When bladder tumors have spread into the muscle layer but haven’t spread into distant organs yet, doctors consider one of two surgical options:
A partial cystectomy is exactly what it sounds like: Doctors remove the part of the bladder that contains the tumor. These types of cystectomies are rare, though: Patients who qualify have one first-time tumor (so none that have recurred) in a place that the surgeon can take it out easily, leaving enough of the bladder intact so it can store urine normally.
Most patients get radical bladder removal surgery, which involves removing the entire bladder, nearby lymph nodes, and (many times) the reproductive organs to make sure the cancer doesn’t spread there.
For men, this means the prostate gland and seminal vessels (the ducts that carry semen). Surgeons usually remove a woman’s ovaries, fallopian tubes, uterus, cervix, and, sometimes, vaginal wall. After it’s over, surgeons need to construct a new bladder for you.
Before you have a cystectomy, you usually have chemo treatments for two to four months beforehand to shrink the tumors and stop their progress. People with stage 4 cancer that’s spread to distant organs (or metastasized) aren’t candidates for cystectomies and just get medications instead. People who have other health conditions (advanced heart disease, say) may also not be candidates since they might not survive surgery or the aftermath.
Procedure basics: Radical cystectomies are major operations, lasting anywhere from four to eight hours. There are two types of procedures:
The first is an open operation, where a surgeon makes one large incision from your belly button to your pubic bone and removes the bladder and organs that way.
In minimally invasive surgery, doctors make six small incisions in your abdomen and then insert robotic surgical instruments (known as laparoscopic instruments) that look like thin telescopes with lights and perform the surgery by manipulating the instruments.
You can opt for either type, but if you’ve had several abdominal surgeries or radiation to your abdomen or pelvis, you may not be a good candidate for the minimally invasive type.
Once the bladder is removed, doctors may also use part of your intestines (large and small) to create a new way for you to store and get rid of urine. There are three types of urinary diversions:
Neobladder—This bladder is made from your intestines and hooked up to your urethra inside your body. It’s like having a new bladder (but you do have to train it to act like one) and you pee the same way you used to before surgery. Seems perfect, right? But if the cancer has spread to the neck of your bladder or urethra, you were incontinent before surgery, you had radiation to your pelvic area, or your kidneys or liver aren’t working well, you’re not eligible for a neobladder.
Indiana pouch—This is a pouch also made from intestines that’s attached to a small opening (called a stoma) made in your belly button (or another part of your stomach). The pouch is inside the body and stores the urine. To empty it, you stick a catheter inside the opening to drain the urine. We know how it sounds, but you get used to doing it every four hours or so during the day (and maybe a couple of times at night) for three minutes or so at a time. You’ll need to clean the catheter and cover the stoma after you’re done.
Ileal conduit (or urostomy)—This is the most common option. Doctors will take a section of your intestine, attach it to one or both ureters, and then create an opening (or stoma) in your stomach. Then you wear a plastic bag that’s attached to the opening all the time. When the bag is full, you empty it in the toilet and reattach it. (You may have to get a special appliance to drain the bag when you sleep.)
Recovery basics: Be prepared to spend about a week at the hospital. People who’ve had minimally invasive surgery tend to have slightly less pain because the surgical incisions are smaller, so they may spend slightly less time in the hospital.
After you’re discharged, you’ll probably still be on pain meds and need to take it easy—no heavy lifting, no strenuous exercise, no driving for the first three or four weeks. But you do need to walk every day—it’ll speed healing and keep your mood up. Another definite do: Drink between eight and 12 glasses of water (or other healthy beverages) to avoid getting dehydrated, which sends many patients to the ER. Another complication is infection, so call the doctor if you have a fever or chills.
Full recovery takes anywhere from six to eight weeks, possibly longer. But the biggest hit is to your sex life. For men, this almost always means it’s tough to get an erection. For women, it means a loss of libido and pain during lovemaking. Don’t give up! It’s embarrassing, but talk to your urologist, who may be able to recommend a physical therapist who can show you exercises to strengthen your pelvic floor as well as a sex therapist who can help you get your mojo back.
Follow-up treatment: Your doctor will monitor you every three to six months for the first two years, with imaging tests as well as cystoscopies to check for new tumors. The five-year survival rates for patients who’ve had a cystectomy is nearly 60%, though the rates can vary depending on the stage of cancer. That may not sound great, but without any treatment at all, the five-year cancer survival rate is 5%. And the most important thing to remember is that 60% is an average—your particular odds may be much, much higher.
Surgery Plus Drugs (Bladder Preservation)
Losing your bladder is a big deal, which is why many patients with stage 2 and 3 bladder cancer want to keep theirs. Sometimes that’s an option. If you have just one tumor that’s four centimeters or less, no carcinoma in situ, no blockage of the ureters, and your bladder is in good working order (you’re not chronically incontinent), then you’re a good candidate for something called combined modality treatment (CMT) or trimodal therapy. This involves surgery plus chemo plus radiation.
Procedure basics: Your tumor will be removed via TURBT. Then you’ll get chemotherapy via IV once a week, typically with Platinol (cisplatin); you’ll also be getting radiation once a day, five times a week, for six to eight weeks.
While the chemo and radiation are given at lower doses because they’re done together, you’ll probably still have side effects—nausea, fatigue, and hair loss from chemotherapy; and fatigue and having to go more often or more urgently when peeing.
Recovery basics: Because you had TURBT, you’ll have to take it easy for a week or two afterwards. But the side effects of the radiation and chemo should stop after those procedures. You may have some issues with incontinence or a weak stream, but more than 75% of patients have normal working bladders, according to the Bladder Cancer Advocacy Network. Plus, patients are happier with their sex lives after trimodal therapy.
Follow-up treatment: You’ll be monitored every three to six months with scans and cystoscopies for the first two years. The five-year survival rate is about 71%. Roughly 10% of patients have to undergo what’s called a salvage cystectomy because their tumors returned and were in danger of spreading.
What Medications Are Used to Treat Bladder Cancer?
Even if your bladder cancer is non-invasive and non-aggressive, you still are a candidate for drugs, especially chemotherapy and immunotherapy. When you have non-invasive bladder cancer (stages 0 and 1), doctors will prevent tumors from spreading by injecting drugs directly into your bladder via a catheter, where they stay for two hours before you pee them out. This is called intravesical therapy.
Patients with stage 2 and 3 bladder cancer will typically have chemo for two to four months before surgery (unless they’re doing the combined trimodal therapy) to shrink tumors. And patients with stage 4 bladder cancer typically don’t have surgery, but do get chemotherapy, targeted drugs, or immunotherapy to slow and control their disease.
Here are the drugs that are typically used:
For non-invasive bladder cancer: BCG, a weakened form of the tuberculosis bacteria, is used for intravesical therapy, but since there’s a shortage, it’s only being used for those with aggressive tumors.
Like all immunotherapy drugs, BCG harnesses your immune system to kill the cancer cells. You get weekly treatments for about six weeks, and you may get maintenance doses for a year or two (but thanks to the shortfall, those maintenance doses may be with chemotherapy).
It’s 60% to 70% effective in destroying cancer cells, so it’s considered the first-line defense. The side effects include fevers, chills, and symptoms that are a lot like having a UTI—pain or burning when you pee and having to go a lot.
For metastatic cancer: Like chemo, these drugs are given via IV every two or three weeks. They work by blocking the proteins that cancer cells use to make themselves invisible to your immune system.
When you take immunotherapy drugs, your immune system is able to “see” the cancer cells and attack them. The drugs approved for stage 4 bladder cancer target PD-L1 or PD-1 (types of protein). They include:
Immunotherapy drugs don’t always work—it may have something to do with how each person’s immune system responds—but when they do, they can bring about remission in a lucky few. And they can prolong survival (up to 19 months sometimes) and slow down the progress of the disease for another 20% to 50% of patients.
While the side effects can include fatigue, chills, and infections, the biggest risk is that your immune system can start to attack healthy cells in other organs, including your liver and intestines, leading to hepatitis or colitis. In that case, your doctor will give you steroids.
For non-invasive cancer: Since there’s a BCG shortage, doctors will inject chemotherapy drugs into your bladder. The most common and most effective is Mutamycin (mitomycin-C).
For muscle-invasive and stage 4 cancer:
Before surgery, patients get IV doses of one of these combinations of chemo drugs (both combos are called neoadjuvant chemotherapy):
Gemzar and Platinol (gemcitabine and cisplatin)
Trexall (methotrexate), Velban (vinblastine), Rubex (doxorubicin), and Platinol (cisplatin)
You’ll get an infusion every two to three weeks for two to four months before surgery. The goal is to shrink the tumors and kill any cancer cells that might have spread outside the bladder. That’s why having chemo before a cystectomy helps boost your chances of remission after it.
For bladder cancer that has spread to other parts of your body, chemo can slow the progress, shrink tumors, and prolong your life (up to 14 months more, Romanian researchers found) and may even put you in remission. The drugs are the same that are given for stage 2, but you may have more cycles of it.
For metastatic bladder cancer:
Researchers have discovered a genetic mutation in about 10% to 15% of bladder cancers that can be targeted with drugs called FGFR2 inhibitors. One study found that one of these, Balversa (erdafitinib), slowed down tumor growth in about 40% of cases.
To see if you’re a candidate, ask your oncology team to do genomic testing on the tumors. It may be that your doctor starts you out on chemo and then switches to a targeted drug once the testing comes back.
Where Should You Seek Treatment?
What type of meds you get to treat your bladder cancer depends on discussion with your urologist and urologic oncologist. But doctors admit that the best treatments often happen at cancer centers. Cancer centers usually have more resources and are often affiliated with medical schools. As a patient, you have more access to clinical trials and hard-to-obtain drugs (like BCG), so your chances of successful treatment are bumped up.
Another benefit to cancer centers: They often have palliative doctors, who can put you in touch with the support team—from nurses to social workers to patient groups—you need to be able to keep your spirits up as you go through treatment. Most people think palliative care is only for cancer patients who are facing death, but that’s wrong. Palliative medicine is for any cancer patient, at any stage, and their caregivers. That can boost your outcome too and turn you into a bladder-cancer success story.
Frequently Asked QuestionsBladder Cancer Treatment
What is a urinary diversion and which one is right for me?
After a surgeon removes your cancerous bladder, you’ll need a new way to store and get rid of urine. That’s called a urinary diversion and there are three types. The most common kind for most people is an urostomy or ileal conduit pouch that fits over an opening in your stomach. There’s also a neobladder, made from parts of your intestine, that’s put in place of your old bladder, but if your cancer has spread to the urethra that may not be an option. Talk to your urologist and seek out info from folks who’ve gotten each type. You can find them online at the Bladder Cancer Advocacy Network’s forums.
I have stage 4 bladder cancer. What are my options?
More than before, thanks to new immunotherapy and targeted drugs that can shrink tumors dramatically and may even put you in remission. Your best bet for getting these new drugs is at a dedicated cancer center, where your oncology team can help you enroll in clinical trials.
What is BCG and why is there a shortage of it?
BCG is a weak version of the bacteria that causes tuberculosis. It’s used in intravesical therapy, which is when a urologist injects a liquid form of the drug into your bladder every week for about six weeks or so after your tumor has been surgically removed. One of the two companies that makes BCG stopped manufacturing it in 2016, causing a shortfall. Although the other company has ramped up production, it takes time to make the drug, and it doesn’t cost that much (at least compared to other bladder cancer drugs), so there’s no real incentive for other companies to get in the game. That’s why it’s now only given to patients with high-grade tumors.
What is the bladder cancer survival rate?
It depends on the stage, but overall the success rate is 77%.
Blue-light Cystoscopies:Journal of Urology. (2017). “Comparative Effectiveness of Fluorescent Versus White Light Cystoscopy for Initial Diagnosis or Surveillance of Bladder Cancer on Clinical Outcomes: Systematic Review and Meta-Analysis.” ncbi.nlm.nih.gov/pubmed/27780784
Untreated Bladder Cancer Statistics:BJU International. (2020). “The natural history of untreated muscle-invasive bladder cancer,” ncbi.nlm.nih.gov/pubmed/31310696
Cystectomy Survival Rates:BJU International. (2015). “Contemporary radical cystectomy outcomes in patients with invasive bladder cancer: a population‐based study,” doi.org/10.1111/bju.13152