Let's Talk About Bladder Cancer
We've got the doctor-approved scoop on bladder cancer causes, symptoms, treatments, and a jillion other facts and tips that can make life with this condition easier.
Whether you’ve just been diagnosed or worry you could have bladder cancer, you’re probably nervous, confused, and maybe even a little scared. That’s normal! But we are here for you. On this page alone, you’ll discover the realities and challenges of the condition, but also the best treatments, helpful lifestyle changes, where to find your bladder cancer community, and all the crucial information to help you not just manage—but thrive. We’re sure you’ve got a lot of questions...and we’re here to answer them.
Our Pro Panel
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
University of Southern California Institute of Urology
Philippe Spiess, M.D.
Genitourinary Oncologist and Assistant Chief of Surgical Services
Moffitt Cancer Center
Christopher M. George, M.D.
Northwestern Medicine Cancer Center
Smoking is the biggest risk factor, accounting for 50% of all bladder cancer cases, according to the National Institutes of Health. Another study found that workplace chemicals account for 10% of cases. The other 40% are unknown, though recurrent bladder infections may play a role.
It depends on the type of tumor you have, how aggressive it is, and where these tumors are located. If they are just in the bladder lining, you’ll probably have surgery (called TURBT) to get the tumors out, followed by some sort of treatment involving medications injected directly into your bladder through a catheter. When the tumor has spread into the bladder muscle and other areas, you’ll have chemotherapy before getting your bladder surgically removed. You’ll probably have chemo after the surgery, too.
In 90% of cases, it’s blood in the urine, whether you can see it or not. The good news is that it’s an early sign, since tumors in the bladder bleed easily.
It’s the sixth most common cancer, with about 81,000 new cases expected in 2020. But it’s way more common in men than women—four times as many men get it—and more likely to occur when you are 55 and older.
What Is Bladder Cancer, Anyway?
To understand bladder cancer, you have to know a bit about your bladder, that hollow organ that gets very little attention unless you get an infection or really, really need to pee.
Your bladder is where you store urine, the liquid waste that comes from your kidneys, which leaves your body via a duct called the urethra. The bladder is made up of several layers:
the inner lining
the connective and muscle tissues
the layer of fat that separates the bladder from nearby organs, including your uterus (if you’re a woman) or your prostate (if you’re a guy)
Like most cancers, bladder cancer can happen when you’re exposed to toxic chemicals—via tobacco smoke, say, or on the job—that have the potential to cause defects in the DNA of your cells. Many of these carcinogens leave the body when you pee, which is great.
What’s not so great? Your bladder being bathed in these chemicals day after day for years. That can take a toll the urothelial cells that make up the innermost lining (the part in direct contact with urine), gradually damaging their DNA. Eventually these damaged cells begin to grow uncontrollably, clumping together into masses, or tumors.
The majority of bladder tumors are found in this lining. If the cancer isn’t caught early, or you have a more aggressive type of tumor, it spreads to the other layers, making it harder to treat without radical surgery.
In 2020, according to the American Cancer Society, there will be about 81,000 new cases of bladder cancer, making it the sixth most common cancer in this country. Men, though, are four times more likely than women to develop this type of cancer: Over their lifetime, men have a 1 in 27 chance compared to a woman’s 1 in 89. (But of course those odds depend on your individual risk factors.) Usually, people are older when they get diagnosed—the average age is 73.
Among all deaths from cancer, bladder cancer accounts for nearly 3%. The death rates have stayed pretty much the same for decades, but that is changing. New medications like immunotherapy and targeted drugs as well as more powerful diagnostic tools have the potential to improve survival rates and quality of life even if you have a more advanced case.
Types of Bladder Cancer
Bladder cancer is divided into several different types:
Urothelial carcinoma (also known as UCC). Ninety percent of all bladder cancer cases begin in the urothelial cells that make up the inner lining. There are three different kinds of tumors (though you can have more than one kind):
Papillary tumors are easier to remove and tend to be less aggressive. They have finger-like projections and look like algae at the bottom of the ocean. And because they have a narrow stalk, they're only minimally attached to the bladder surface and often grow toward the hollow center away from the other layers. But they often recur and can become invasive.
Sessile tumors, on the other hand, lie flat against the bladder lining, and are considered more aggressive because they can burrow into deeper layers more quickly.
Carcinoma in situ (CIS) is another type tumor, diagnosed in about 10% of patients. It shows up like a patch of red dots and makes that area of the bladder look inflamed. But CIS is actually considered more aggressive too since it can progress quickly and has a high rate of recurrence.
Squamous cell carcinoma. This type of bladder cancer accounts for about 4% of cases in the U.S. Chronic infections and long-term catheter use can cause squamous cells on the bladder floor and walls to mutate and form tumors.
Adenocarcinoma. This type of bladder cancer is also rare, and makes up about 2% of all cases. It’s made up of glandular cells. Chronic bladder irritation, like what can occur with frequent bladder infections, may also be a risk factor for this type of cancer.
Bladder cancer is categorized as non-invasive and invasive. In Non-invasive bladder cancer (NMIBC) the tumors are located only on the inner lining of the bladder. Invasive tumors (known as muscle-invasive bladder cancer, or MIBC) have grown into other layers, especially the muscle and fatty tissue. The good news is that 70% of bladder cancers are non-invasive. The not-so-great news is that even after these tumors have been removed, the rate of recurrence (or return) is 70% to 80%. Tumors are also classified as low-grade (those that grow slowly) or high-grade (the ones that grow faster).
What Causes Bladder Cancer in the First Place?
The short answer: In a lot of cases, doctors don’t know. While there are risk factors, there are many people who develop bladder cancer without any of them, and vice versa.
Still, one of the biggest risk factors is smoking, whether it’s cigarettes, cigars, or pipes, or living with someone who does. And although the jury is still out on vaping, experts think it can cause changes in the bladder that makes it more susceptible to cancer, at least according to research done on mice.
How risky are cigarettes? Smokers are two to four times more likely to develop the most common type of bladder cancer, TCC, as nonsmokers—and they are more likely to have their tumors return and even die from bladder cancer. Smokers with a pack-or-more-a-day habit may be upping their risk by six to 10 times. People exposed to secondhand smoke over the course of their lifetime are 22% more likely to have bladder cancer, according to Chinese researchers—but the evidence is unclear whether this is true for kids who grew up in a smoking household. Quitting helps—one study that looked at post-menopausal women found that smokers who’d kicked the habit 10 years earlier had cut their risk by 25%.
Some of the other factors that raise your odds include:
Age: People in their 60s and 70s are more likely to develop it than younger people, perhaps because it takes a long time for chemical exposure to mutate DNA and turn them into cancerous cells.
Gender and ethnicity: While men take the lion’s share of new cases, women tend to get diagnosed at later stages, have more aggressive tumors, and worse outcomes. One reason: Women have thinner bladders than men do, so the tumors grow into the other layers faster. Another: Your symptoms get misdiagnosed as UTIs more frequently if you’re a woman, so you’re not as likely to get referred to a urologist until much later. And while white people are more likely to get this type of cancer, African Americans also have worse outcomes because their tumors tend to be more aggressive, though no one knows why.
Chemicals in the workplace and the environment: Aromatic amines, a group of chemical byproducts, have been linked to bladder cancer. You can find these chemicals in diesel fuels, paint products, and plastics, as well as certain types of manufacturing, like leather goods and textiles. That means people who work in these jobs, like construction workers and truckers, are also at risk. Arsenic, found in drinking water that comes from wells, has also been linked to bladder cancer. Some water filters remove this chemical so if you’re getting your water from a well, look into those that do.
Family history: If one of your parents or siblings had bladder cancer that increases your chances of getting to. How much? Your odds double, according to one Italian study, and increase fourfold if you smoke and have a family history.
Chronic urinary tract infections: People who suffer from chronic UTIs and bladder and kidney stones also have a slightly elevated risk, though the link isn’t well understood. It’s thought that chronic infections and irritation can cause inflammation, and there is a connection between inflammation and cancer in general.
Should I Be Screened for Bladder Cancer?
Unfortunately, there isn’t a screening test for bladder cancer. But if you have risk factors (you smoke, your mom had bladder cancer), mention them to your primary care doctor. They can perform a urinalysis during your yearly checkup to check for blood in the urine, which can be an early sign (see below!).
Do I Have the Symptoms of Bladder Cancer?
Luckily, even non-invasive papillary tumors can cause symptoms early on (and we say luckily because that means you can get diagnosed and treated sooner). The biggest one: Blood in your urine without any accompanying pain, which is how the vast majority of people with bladder cancer present. But the blood doesn’t have to be visible; even microscopic amounts can signal cancerous tumors.
Other signs include:
Going to the bathroom more often and more urgently, especially at night. Although an enlarged prostate, overactive bladder, or a UTI can also cause these symptoms, they can be signs of bladder cancer when you also have blood in your urine.
Pain or a burning sensation when you pee
Not being able to urinate even if you have to go (a sign the tumor is obstructing your bladder muscle) or having a very weak stream
Back pain, especially on one side (a sign the tumor has gotten bigger and spread)
Losing more than 15 pounds in three months without trying (a sign that the cancer is more advanced)
General fatigue or weakness (another sign of advanced cancer)
When Should I See a Doctor?
If your pee is pink, bright red or cola-colored, book an appointment right away. Yes, it’s scary but chances are you may not have cancer—UTIs, kidney stones, or some other kind of infection can also cause bleeding. But even if you do, bladder cancer is way more treatable if caught in an early stage than later on, when you may need extensive surgery. The five-year survival rate—or the percentage of people who are alive five years after their diagnosis—for all patients is 77%. For those whose tumors are caught at the earliest stages it’s a very reassuring 96%.
How Do Doctors Diagnose Bladder Cancer?
If a urine test shows you have blood and your primary provider has ruled out a UTI via a urine culture that checked for bacteria, you’ll probably be referred to a urologist who can run more advanced diagnostic tests, including:
Cytology tests—A doctor checks a urine sample for pre- and cancerous cells. Cytology tests still can’t catch all tumors, which is why doctors still rely on other tests. But there are new urinary marking tests that look for abnormal genes and can pick up the signs of tumors, though these aren’t widely available yet.
Cystoscopy—The doctor puts a probe with a light and small camera through your urethra and into your bladder to look for tumors. Yes, it’s really uncomfortable but the doctor numbs the urethra and you’ll probably be given a sedative. It’s also over fairly quickly—in about 10 minutes tops (though it may seem longer). If the urologist finds a small tumor (under a millimeter), then he or she can burn it off, send it off to be biopsied, and save you a trip to the OR. But most of the time, doctors remove the tumors in a hospital setting while you’re under local or even general anesthesia. If possible, try to find a urologist who uses blue-light cystoscopy instead of the conventional white-light cystoscopy—the blue light is more powerful and can help the doctor spot smaller tumors more easily.
Transurethal resection of bladder tumor (TURBT)—When doctors take out a tumor (or tumors) to check for cancer, they cut them out (or resect them) and send samples as well as tissue samples from other parts of the bladder to a pathologist. Sometimes these tumors can be benign, but in case they’re not, a urologist will want to scrape everything out, including the base of the tumor. To do that, you have to be under anesthesia, either general or via an epidural.
Imaging tests—A urologist will also want you to get a CT scan or an ultrasound of the urinary tract, including the bladder, the kidneys, and the ureters (the ducts that connect the kidneys to the bladder). It can also show if the lymph nodes in the area are enlarged, which may mean the cancer has spread there. You can get the CT scan before or after the cystoscopy, but it’s probably more efficient to get it done before, so if doctors spot a tumor, they can schedule the biopsy and removal at the same time.
Bladder Cancer Stages
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 or tumors have spread. Doctors use these letters and numbers first:
T (stands for tumor)-only located in the bladder
N (stands for node)-has spread to nearby lymph nodes
M (metastasis)-has spread to distant organs like the liver and lungs
0a-Non-invasive papillary tumors that can be removed pretty easily
0is-Carcinoma in situ
1-The tumor has spread into the connective tissue
2-The tumor has spread into the muscle
3-The tumor has spread into the fatty tissue surrounding the bladder, kidneys, or ureters
4-The tumor has spread into nearby organs
Then the doctors combine the letters and numbers to give more details to make it easier to come up with a treatment plan. So, for example, T2 N0 M0 means the tumor has spread into the second layer of the bladder but there’s no sign of cancer in the lymph nodes or other organs.
What’s the Best Treatment for Bladder Cancer?
It depends on the type of tumor you have and what type of bladder cancer you have (invasive or non-invasive). But in general, treatment is usually a combination of surgery and medications, including chemotherapy and immunotherapy. Sometimes, if you have a single low-grade papillary tumor, a doctor will remove it and then monitor you closely via cystoscopies every few months to see if it comes back.
For Non-Invasive Bladder Cancer (stages 0 to 1)
TURBT: This is the preferred surgery for people with non-invasive bladder cancer, even if the tumors are aggressive and grow quickly. The first time it’s done, your doctor may inject Gemzar (gemcitabine), a chemo drug, into the bladder via a catheter right after the operation, a strategy that’s been shown to reduce the risk of recurrence. But bladder cancer has such a high rate of recurrence, that even low-grade papillary tumors can come back and can spread.
TURBT + Medications: For tumors that have come back, are more aggressive or are growing quickly, a doctor will remove them surgically and then use drugs to control the cancer—immunotherapy (which is considered the most effective, especially for the tumors that have the most risk of spreading) or chemotherapy. These drugs are injected through a catheter directly into the bladder every week for six weeks, and possibly longer, depending on what your doctor advises. The drugs stay in your bladder for at least two hours, and then you go home. (And, yes, you leave the catheter behind too.) This process is called intravesical therapy and it just affects the cells of the bladder, not your whole body and therefore the side effects of drugs are minimized.
Immunotherapy: For decades, urologists have been using BCG, a weak form of the bacteria that causes tuberculosis. Injecting BCG directly into the bladder allows your immune system to fight off the leftover tumor cells and keep new ones from forming. It’s more effective than chemo and can put patients into remission about 60% to 70% of the time. But there are shortages of BCG, so doctors are reserving it for people with high-grade tumors. You have a better shot at BCG treatment if you go to a cancer center. Side effects include flu-like symptoms (fever, chills), a burning sensation when you pee, and blood in the urine.
Chemotherapy: Since BCG is in short supply, doctors can put you on a regimen of either Gemzar (gemcitabine) or Mutamycin (mitomycin). Side effects can include a burning sensation when you pee and blood in the urine.
For Muscle-Invasive Bladder Cancer (Stages 2 and 3)
Chemotherapy + Surgery: When the tumors have spread into your bladder muscle or your tumors keep recurring and are in danger of spreading further, a urologist will suggest you get your bladder removed. First, though, you’ll get systemic chemotherapy—usually a combination of Gemzar (gemcitabine) and Platinol (cisplatin) given through an IV—for two to four months before surgery to control or shrink the tumors. Then a urologist will surgically remove your bladder (this is called a cystectomy).
If only part of the bladder has cancer, you’ll have a partial cystectomy (but this is rare). More often, a urologist will perform a radical cystectomy.
For men this means also removing the prostate and for women this means the reproductive organs—uterus, fallopian tubes, and ovaries. Then the doctor will create a new place to store your urine.
If there were no cancerous cells in your urethra, the surgeon may be able to reconstruct a bladder from your intestines and place it where the original one was inside your abdomen. More commonly, though, the doctor creates an opening in the abdomen (called a stoma) and attaches a plastic ostomy bag to collect the urine.
Surgery + Chemo + Radiation: If you don’t want to lose your bladder (and really, who does?) you may be eligible for something called trimodal therapy or combined modality treatment (CMT). To qualify, you can only have one tumor no bigger than 4 centimeters that hasn’t blocked part of a kidney and no carcinoma in situ. Your cancer can’t have spread to your lymph nodes, either, and your bladder has to be worth saving—in other words, people who are chronically incontinent aren’t eligible.
A doctor will perform a thorough TURBT. Then for six to eight weeks, you’ll have chemotherapy once a week. At the same time, you’ll be getting radiation once a day, five times a week, for six to eight weeks. For those who qualify, the outcomes are similar to cystectomies, but your quality of life is better because you keep your bladder. If tumors come back more aggressively, your doctor will probably recommend a cystectomy (called a salvage cystectomy).
Medications Only (stage 4)
If your cancer has metastasized, you’ll get chemotherapy or newer drugs, like immunotherapy or targeted meds, to help control the disease or even, in a few cases, put you in remission. There’s no general rule as to what should be given first—immunotherapy might work for you without affecting your quality of life that much or it may not, in which case you’ll switch to chemotherapy. The reverse may be true too.
Chemotherapy: These are given as IV infusions so the drug (or combination of drugs) can get into your bloodstream and eradicate all the cancerous cells in your body. Chemo meds are the same as the ones given to stage 2 patients.
Immunotherapy: Like chemo, these drugs are given via IV every three weeks or so and harness your immune system to attack cancer cells. Here’s how: Cancer cells are able to make themselves invisible to the immune system by expressing certain proteins on their surface so that the immune system can’t see the cells. Immunotherapy meds block those proteins so the cancer cells become visible. Immunotherapy doesn’t work for everyone, but when it does, it can slow the progress of cancerous tumors in 20% to 50% of patients and for a lucky few dramatically shrink tumors down to nearly nothing.
Targeted drugs: 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. So no matter what first-line treatments your doctor recommends, ask for genomic testing to see if you’re a candidate for these drugs.
Does Bladder Cancer Have Complications?
All treatments have complications. If you have TURBT surgery, you’ll have to use a catheter for a few days, which can put you at risk for infection. Intravesical therapy can cause such side effects as burning, infections, and even fevers.
The more complicated the surgery, like a radical cystectomy, the more complications you can have—the readmission rate to the hospital can be as high as 40% to 50%. Two of the more common ones that send people to the ER are dehydration and infections.
You can reduce your risk of complications by eating more fruits and vegetables as well as more plant-based meals, staying active, and drinking lots of fluid. While these things won’t prevent recurrence—the evidence that certain vitamins (like vitamin E) and vegetables (like broccoli) can prevent bladder cancer is mixed—they can speed healing and help you regain your health.
And of course quit smoking if you haven’t already (or get loved ones to quit if you’re being exposed to secondhand smoke). And get support—people do better, say experts, when their family members or friends they can rely and lean on.
What Is Life Like for People With Bladder Cancer?
It isn’t easy. Even in best-case scenarios—your tumors were superficial and not aggressive—you’ll have to come back every three to six months for checkups, including a cystoscopy, for at least the first year and possibly into the second.
If you have chemo or immunotherapy, there are side effects, some more unpleasant than others, from fatigue to diarrhea to itchiness all over your body.
By far the biggest hit to your self-image may come after a cystectomy, especially if you are fitted with ostomy bag. Love-making will also be more complicated for both men and women after a cystectomy—without their prostate, most men have ED, and because the nerve endings in their vaginas might have been damaged, sex for women isn’t fun. A sex therapist can help.
But all of these things pale if you are cancer-free, and luckily, there are many people who’ve gone through whatever challenges and complications you face. The trick is finding them.
Your urologist and oncology team can help—especially if your hospital has a palliative medical team that can point you in the right direction. Otherwise, check out these organizations that can guide you.
Bladder Cancer Organizations
American Bladder Cancer Society (ABLCS): ABLCS also has forums where you can get answers from experienced bladder cancer patients on thousands of topics, from the BCG shortage to what to do if you metastatic cancer. You can also find basic info on bladder cancer, including what questions to ask your provider for all sorts of scenarios, including how treatment will affect your sex life.
Bladder Cancer Advocacy Organization (BCAN): Now 15 years old, this nonprofit offers online support groups as well as info on groups in your state. But it also sponsors research and scientific meetings, has loads of up-to-date information as well as video Q&As with doctors and researchers, and opportunities for you to get involved, whether telling your story or contacting legislators.
Cancer Support Community: Hailed as one of the largest cancer support systems, they offer MyLifeLine, a unique online communication platform to easily connect with other cancer patients like yourself. And yes, they have a section just for those living or caring for those with bladder cancer.
Smart Patients: Bladder Cancer: Smart Patients is the home of forums organized by need – in this case, bladder cancer. Here you can join the discussion for bladder cancer patients and their families—many of whom are sharing their experiences, advice, information about treatments, symptoms, side effects, and more.
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Quitting Smoking and Bladder Cancer: Cancer Prevention Research (2019). “Smoking Cessation and the Risk of Bladder Cancer Among Postmenopausal Women.” cancerpreventionresearch.aacrjournals.org/content/12/5/305
Vaping and Bladder Cancer Risk: Proceedings of the National Academies of Sciences (2019). “Electronic-cigarette smoke induces lung adenocarcinoma and bladder urothelial hyperplasia in mice.” pnas.org/content/116/43/21727
Women and Bladder Cancer: Translational Andrology and Urology (2016). “Female With Bladder Cancer: What and Why Is There a Difference?” ncbi.nlm.nih.gov/pmc/articles/PMC5071204/#__ffn_sectitle
Workplace Rrisk: JAMA Oncology. (2015). “Contemporary Occupational Carcinogen Exposure and Bladder Cancer: A Systematic Review and Meta-analysis.” ncbi.nlm.nih.gov/pubmed/26448641
Family History: Cancer Epidemiology. (2017). “Family History of Cancer and the Risk of Bladder Cancer: A Case-control Study from Italy.” ncbi.nlm.nih.gov/pubmed/28363161
Treatment for Non-Invasive Bladder Cancer Tumors: British Journal of Urology (2019). “Update on the guideline of guidelines: non‐muscle‐invasive bladder cancer.” onlinelibrary.wiley.com/doi/full/10.1111/bju.14915
Targeted Medications: New England Journal of Medicine. (2019). “Erdafitinib in Locally Advanced or Metastatic Urothelial Carcinoma.” ncbi.nlm.nih.gov/pubmed/31340094