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For some people with a brain tumor or spinal cord tumor, treatment can remove or destroy the tumor. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but you might find it hard not to worry about the tumor coming back (recurring). This is very common.

For others, the tumor may never go away completely. Some people may get regular treatments to try to keep the tumor in check and to help with symptoms. Learning to live with a tumor that does not go away can be difficult, but many people find ways to manage their health and maintain a good quality of life.

Follow-up care after a brain or spinal cord tumor

Even after you’ve completed treatment, your doctors will still want to watch you closely. Talk to them about developing a survivorship care plan for you. This plan can guide your next steps after treatment, including follow-up appointments and ways to stay healthy.

What’s usually in a survivorship care plan

A survivorship care plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests, such as screening for other cancers, or monitoring for long-term health effects from your tumor or its treatment
• A list of possible late or long-term side effects, including what to watch for and when to contact your doctor
• Diet and physical activity suggestions

What to expect during follow-up visits

Whether the tumor was removed completely or not, your cancer care team will want to follow up closely with you, especially in the first few months and years after treatment to make sure there is no progression or recurrence. Depending on the type and location of the tumor and the extent of the treatment, the team will decide which tests should be done and how often.

During follow-up visits, your doctors will ask about any symptoms, examine you, and might order lab tests or imaging tests such as MRI scans to look for progression (growing) or a recurrence of the tumor. Even tumors that have been treated successfully can sometimes come back.

During this time, it's important to report any new symptoms to your doctor right away, so the cause can be found and treated, if needed. Your doctor can give you an idea of what to look for. If you need further treatment at some point, the doctor will go over your options with you.

Recovering from the effects of the brain or spinal cord tumor and its treatment

You might have side effects from the tumor itself or from its treatment, which can range from very mild to fairly severe. Some side effects might last a long time or might not even show up until years after you have finished treatment. Your doctor visits are a good time to ask questions and talk about any changes or problems you notice or concerns you have.

Once you’ve recovered from treatment (particularly surgery or radiation therapy), your doctors will want to do careful physical exams and get imaging tests (such as MRI scans) to determine the extent and location of any long-term changes in the brain.

Many types of doctors and other health professionals might help look for these changes and help you recover. For example:

• A neurologist (a doctor who specializes in medical treatment of the nervous system) may assess your physical coordination, muscle strength, and other aspects of nervous system function.
• If you have muscle weakness, paralysis, or numbness, you will likely see physical and/or occupational therapists and perhaps a physiatrist (a doctor who specializes in rehabilitation) while in the hospital and/or as an outpatient for physical therapy.
• If your speech is affected, a speech therapist (speech-language pathologist) will help improve your communication skills.
• If needed, an ophthalmologist (eye doctor) will check your vision, and an audiologist may check your hearing.
• After surgery, you may also see a psychiatrist or psychologist to determine the extent of any changes caused by the tumor or surgery. If you get radiation therapy and/or chemotherapy, this process may be repeated again after treatment is finished.
• If you had surgery or radiation therapy for a tumor near the base of the brain, your pituitary hormone production may be affected. You might need to see an endocrinologist (a doctor who specializes in hormone disorders). If hormone levels are affected, you might need hormone treatments to restore normal levels for the rest of your life.