What will happen after treatment for bladder cancer?

For some people with bladder cancer, treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer growing or coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.

It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are living full lives. Our document, Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed information on this.

For other people, the bladder cancer may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the cancer in check. Learning to live with cancer as a more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. People who have had bladder cancer are at high risk of developing a second bladder cancer, so it is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you may have and may do exams, lab tests (such as urine cytology), and imaging tests. These tests are described in the section “How is bladder cancer diagnosed?”

In people with no signs of cancer remaining, most experts recommend repeat exams every 3 to 6 months to see if the cancer is growing back or if there is a new cancer within the urinary system. Your schedule of exams and tests will depend on the original extent 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. A typical follow-up plan includes urine cytology, a general physical exam, imaging tests, and routine blood tests. If your bladder has not been removed, regular cystoscopy exams will be part of the plan as well. The time between doctor visits may be extended after a few years if no new cancers are seen.

Some doctors recommend other lab tests as well, such as flow cytometry, image cytometry, or tumor marker tests. Many different kinds of urine tests can help see if the cancer is coming back, but so far none of these can take the place of cystoscopy.

Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Almost any cancer treatment can have side effects. Some may last for a few weeks to several months, but others can last the rest of your life. Don’t hesitate to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.

If cancer does recur, treatment will depend on the location of the cancer and what treatments you’ve had before. It may be surgery, intravesical therapy, radiation therapy, chemotherapy, or some combination of these. For more information on how recurrent cancer is treated, see the section “Treatment of bladder cancer by stage.” For more general information on dealing with a recurrence, you might also want to see our document, When Your Cancer Comes Back: Cancer Recurrence. You can get this document by calling 1-800-227-2345.

For patients with a urostomy

If you have a urostomy, you may worry about even everyday activities at first. It’s normal to have worries and concerns when adjusting to such as 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 about the 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 document, Urostomy: A Guide.

Seeing a new doctor

At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy:

• A copy of your pathology report(s) from any biopsies or surgeries
• Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.
• If you had surgery, a copy of your operative report(s)
• If you stayed in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
• If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given
• If you had chemotherapy or other treatments, a list of the drugs, drug doses, and when you took them

It is also 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.