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 find it hard not to worry about cancer coming back. This is very common if you’ve had cancer.
For other people, bladder cancer might never go away completely or might come back in another part of the body. Some people may get regular treatment with chemotherapy , immunotherapy, or other 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.
Life after bladder cancer means returning to some familiar things and also making some new choices.
After treatment, your doctors will still want to watch you closely. People who've had bladder cancer have a high risk of developing a second bladder cancer, so it’s very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you're having and will 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. These visits are a good time to ask questions. And be sure to tell your doctor about any changes or problems you notice or concerns you have.
Doctor visits and tests
Your schedule of exams and tests will depend on the stage and grade of the cancer, what treatments you’ve had, and other factors. Be sure to follow your doctor’s advice about follow-up tests.
Most experts recommend repeat exams 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 urine tests, physical exams, imaging tests (like x-rays, MRI, or CT scans), and blood tests. These doctor visits and tests will be done less often as time goes by and no new cancers are found.
- If your bladder hasn’t been removed, regular cystoscopy exams will also be done every 3 months for at least the first 2 years.
- If you have a urinary diversion, 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 will be checked at least once a year because urinary diversions made with your intestine can affect B12 absorption. 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 tests discussed in Can Bladder Cancer Be Found Early? 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 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 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 keep 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. Unfortunately, it’s not yet clear if there are things you can do that will help.
Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for 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, although 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, by Stage.
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. In fact, bladder cancer survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Bladder Cancer.
Moving on after bladder cancer
For patients 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.
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.
American Society of Clinical Oncology. Bladder Cancer: Follow-Up Care. 10/2017. Accessed at www.cancer.net/cancer-types/bladder-cancer/follow-care on January 25, 2019.
DeGeorge KC, Holt HR, Hodges SC. Bladder Cancer: Diagnosis and Treatment. Am Fam Physician. 2017;96(8):507-514.
Narayan VM, Adejoro O, Schwartz I, et al. The Prevalence and Impact of Urinary Marker Testing in Patients with Bladder Cancer. J Urol. 2018;199(1):74-80.
National Comprehensive Cancer Network, Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Bladder Cancer, Version 5.2018 -- July 3, 2018. Accessed at www.nccn.org/professionals/physician_gls/pdf/bladder.pdf on January 25, 2019.
Information provided by American Cancer Society.