Living as a Bladder Cancer Survivor

For some people with bladder cancer, treatment can remove or destroy the cancer. The end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but you might find it hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For some people, bladder cancer might never go away completely, or it might come back, either in the bladder or in another part of the body. Some people might need regular treatments to try to keep the cancer in check. Learning to live with cancer that doesn't go away can be difficult and very stressful.

Follow-up care

Even if you have completed treatment, your doctors will still want to watch you closely. People who've had bladder cancer are at risk for the cancer coming back, as well as developing a second bladder cancer, so it’s very important to go to all your follow-up appointments. During these visits, your doctors will ask questions about any problems you're having. They may do exams, lab tests, and imaging tests to look for signs of cancer and/or treatment side effects.

Some treatment side effects might last a long time. Some might not even show up until years after you've finished treatment. Your doctor visits are a good time to ask questions and to talk about any changes or problems you notice or concerns you have.

Doctor visits and tests

Your schedule of exams and tests will depend mainly on the cancer’s stage (as well as the risk group, for non-muscle invasive bladder cancer), what treatments you’ve had, and other factors. Be sure to follow your doctor’s advice about follow-up tests.

Most experts recommend exams and tests about every 3 to 6 months for people who have no signs of cancer after treatment. These are done to see if the cancer is growing back or if there's a new cancer in the bladder or urinary system. Your follow-up plan might include physical exams, urine or blood tests, and imaging tests (like MRI or CT scans). These doctor visits and tests can be done less often as time goes by if no new cancers are found.

If your bladder hasn’t been removed, regular cystoscopy exams will also be done, typically about every 3 months for the first couple of years.

If you had a cystectomy and now have some type of urinary diversion (a new pathway to allow urine to leave the body), you will be checked for signs of infection and changes in the health of your kidneys. Urine tests, blood tests, and x-rays might be used to do this. Your vitamin B12 levels will be checked at least once a year because urinary diversions made with your intestine can affect how your body absorbs B12. Your doctor will also talk to you about how well you're able to control your urine. Tests will be done to look for signs of cancer in other parts of your urinary tract, too.

Some doctors recommend other lab tests as well, such as the urine tumor marker (biomarker) tests discussed in Tests for Bladder Cancer. Many of these tests can be used to help see if the cancer has come back, but so far none of these can take the place of cystoscopy.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include:

• A summary of the treatment you’ve received
• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits can cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to have copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of the bladder cancer progressing or coming back?

If you have (or have had) bladder cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

While there are some things you can do that might be helpful, more research is needed to know for sure.

Not smoking

Smoking is a strong risk factor for bladder cancer. Some research has found that people who smoke are more likely to have their bladder cancer recur (come back) and are more likely to die from their cancer than people who don’t smoke.

More research is needed to see if stopping smoking can help lower these risks, although quitting is known to have many other health benefits. If you want to quit smoking and need help, call the American Cancer Society at 1-800-227-2345. You can also learn more in How to Quit Using Tobacco.

Getting to and staying at a healthy weight

Some studies have shown that having excess body weight (a BMI of 25 or more) might be linked to a higher chance of non-muscle invasive bladder cancer growing or coming back.

Adopting healthy behaviors such as eating well, getting regular physical activity, and staying at a healthy weight might help lower your risk, but more research is needed to be sure. Still, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of bladder cancer or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of bladder cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States. They don't have to be proven effective or even safe before being sold. However, there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your health. For more information on how recurrent bladder cancer is treated, see Treatment of Bladder Cancer, Based on the Stage and Other Factors.

For more general information on recurrence, you may also want to see Understanding Recurrence.

Could I get a second cancer after bladder cancer treatment?

People who’ve had bladder cancer can still get other cancers (known as second cancers). In fact, bladder cancer survivors are at higher risk for getting some types of cancer, including:

• A second bladder cancer. This is different from the first cancer coming back.
• Cancer of the ureter (the tube connecting the kidney to the bladder) or renal pelvis (the part of the kidney where it attaches to the ureter)
• Cancer of the pancreas
• Cancer of the larynx (voice box)
• Esophageal cancer
• Lung cancer
• Vaginal cancer (in women)
• Prostate cancer (in men)
• Kidney cancer
• Rectal cancer
• Skin cancer (excluding basal and squamous cell skin cancers)
• Acute myeloid leukemia (AML)

Many of these cancers are linked to smoking, which is also a major risk factor for bladder cancer. Talk to your doctor if you smoke and need help quitting.

Most experts don’t recommend any additional testing to look for second cancers in people who’ve had bladder cancer. Still, it’s important to let your doctor know about any new symptoms or problems you have, because they could be caused by the bladder cancer coming back, or by a new disease or second cancer.

Like other people, bladder cancer survivors should follow the American Cancer Society guidelines for the early detection of cancer and stay away from tobacco products, which increase the risk of many types of cancer.

To help maintain good health, survivors should also:

• Get to and stay at a healthy weight.
• Stay physically active and limit time spent sitting or lying down.
• Follow a healthy eating pattern that includes plenty of fruits, vegetables, and whole grains, and that limits or avoids red and processed meats, sugary drinks, and highly processed foods.
• Avoid or limit alcohol. If you do drink, have no more than 2 drinks per day for men or 1 drink a day for women.

Taking these steps may also lower your risk of some other health problems.

See Second Cancers for more information about the causes of second cancers.

Moving on after bladder cancer

For people with a urostomy

If you had a radical cystectomy and now have a urostomy, you might worry even about everyday activities at first. You might have to alter some of your daily and nightly routines because of changes in how you urinate. Other issues such as having sex might also cause concerns (see below).

It’s normal to have worries and concerns when adjusting to such a major change. But it’s important to know there are health care professionals who are specially trained to help people with their urostomies. They can teach you to take care of your urostomy and help you cope with the changes it brings. You can also ask the American Cancer Society about programs offering information and support in your area. For more information, see our Urostomy Guide.

Emotional support

Some amount of feeling depressed, anxious, or worried is normal when bladder cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.

Sexuality and feeling good about your body

Bladder cancer treatment can often affect your sex life. (See Bladder Cancer Surgery for more on this.) Learning to be comfortable with your body during and after bladder cancer treatment is a personal journey, one that's different for everyone. Information and support can help you cope with these changes over time. Learn more in Fertility and Sexual Side Effects in People with Cancer.