Rehabilitation After a Brain Tumor

This page is for people with a brain or spinal cord tumor, and their families. It explains how rehabilitation (rehab) can help. It covers who is on the rehab team, when to start, and how to get a referral.

A tumor in the central nervous system (the brain and spinal cord) can affect the abilities the brain controls. So can the surgery, radiation, or drug treatment used against it. The National Cancer Institute summarizes adult central nervous system tumors. It lists these signs and symptoms of brain tumors: loss of balance and trouble walking, weakness, vision problems, hearing problems, speech problems, and seizures. It also lists changes in personality, mood, concentration or behavior. For spinal cord tumors it lists weakness or numbness in the arms or legs. It also lists trouble walking.

Those are the very things rehab works on: walking, using your hands, speaking, swallowing, remembering, concentrating, and steadying your mood.

The American Cancer Society says cancer rehabilitation "helps you manage the physical, emotional, and life changes that can happen during and after cancer treatment."

It has four goals:

• Help you stay as active as possible and take part in family, work and other life roles
• Lessen the side effects and symptoms of cancer and its treatment, including the emotional impact
• Help you stay as independent as possible
• Improve your quality of life

It is not aimed at the tumor. It is aimed at what you can do.

The NCI describes the main clinicians in plain terms.

Physical therapists "are trained to understand how different parts of your body work together." After a brain tumor, that usually means balance, strength, walking safely, and the risk of falls.

Occupational therapists "can help you regain, develop, and build skills that are important for day-to-day living." Think dressing, cooking, driving, and running a household routine.

Speech therapists "can evaluate and treat any speech, language, or swallowing problems you may have after treatment." That includes trouble finding words, not just the mechanics of speaking.

Psychologists "can talk to you and your family about your worries and teach you ways to cope with these feelings and concerns."

Oncology social workers "are trained to counsel you about ways to cope with the emotional and physical issues related to your cancer."

Dietitians "can help by teaching you about foods that are healthy, taste good, and are easy to eat." That matters when swallowing or appetite is affected.

The American Cancer Society lists what cancer rehab treats, including:

• Changes in thinking
• Fatigue, pain and swelling
• Balance problems and weakness
• Nerve damage, which doctors call neuropathy
• Problems with speech and swallowing

One named service is cognitive rehabilitation (therapy for thinking and memory).

Thinking and memory problems are easy to leave unmentioned. They do not look like an emergency, and they are hard to describe. But there is a therapy for them. Name them.

The American Cancer Society says cancer rehab is given by trained professionals during treatment, follow-up care or long-term survivorship.

There is also prehabilitation, done before treatment begins. "Research shows that cancer prehab can make a difference." It can help you stay stronger. It can help you handle treatment better. It can mean fewer complications and less time in the hospital.

So ask early, including before surgery. Do not wait until you are struggling.

ACS lists outpatient care (no overnight stay) as one option. Some people stay overnight or longer, as an inpatient. Some services can be given at home. Some are offered by telehealth.

The American Cancer Society states it plainly: "To get cancer rehab, you will need a referral from your health care provider." That referral may send you to a rehabilitation center. It may send you to a single specialist. Which one depends on your insurance coverage and your own needs.

This is the step most often missed. If rehab has not come up, ask your care team about it.

Federal patient material on brain tumors sets out no rehab protocol. NCI's summary of these tumors records the problems they cause. It also points to supportive care. But it gives no detail on physical, occupational, or speech therapy for this diagnosis. The rehab advice above comes from the American Cancer Society. It applies across cancer types. Ask your neuro-oncology team (the cancer doctors who treat brain tumors) what fits your tumor.

• Which abilities is this tumor, or this treatment, most likely to affect?
• Can I start rehab before surgery?
• Who evaluates memory and concentration, and how do I get that assessment?
• Is inpatient or outpatient rehab more likely after surgery?
• What does my insurance cover, and what referral do I need?

• National Cancer Institute — People in Health Care Who Care for People with Cancer: https://www.cancer.gov/about-cancer/managing-care/finding-cancer-care/providers
• National Cancer Institute — Adult Central Nervous System Tumors Treatment (PDQ), Patient Version: https://www.cancer.gov/types/brain/patient/adult-brain-treatment-pdq
• American Cancer Society — What Is Cancer Rehabilitation?: https://www.cancer.org/cancer/supportive-care/what-is-cancer-rehabilitation.html