Rehabilitation After a Brain Tumor

A tumor in the central nervous system can affect the abilities the brain controls. So can the surgery, radiation, or drug treatment used against it. The National Cancer Institute summarises adult central nervous system tumors. Among the signs and symptoms it lists "loss of balance and trouble walking," "weakness," "vision, hearing, and speech problems," "seizures," and "changes in personality, mood, ability to focus, or behavior." For tumors of the spinal cord it lists "weakness or numbness in the arms or legs" and "trouble walking."

Those are the very things rehab works on. Walking. Using your hands. Speaking. Swallowing. Remembering. Concentrating. Steadying your mood.

The American Cancer Society defines it as "a supportive care program that helps you cope with changes in how your body moves, feels, or functions as a result of cancer or its treatment."

It has four goals. Get you as active as possible in daily life. Reduce the side effects and emotional impact of treatment. Keep you independent. 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.

One more role is worth knowing. A physiatrist is a doctor. They focus on the "prevention, diagnosis, and treatment of nerve, muscle, and bone disorders." A physiatrist often leads the rehab plan.

The American Cancer Society lists what cancer rehab treats. Changes in thinking are on that list. So are fatigue, pain, swelling, poor balance and weakness. So is nerve damage, which doctors call neuropathy. So are problems with speech and swallowing. One named service is cognitive rehabilitation.

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 is clear: "You can get cancer rehab at any stage of your cancer journey. Early rehab can often help with problems before they get worse or cause other issues."

There is also prehabilitation, done before treatment begins. "Research shows that cancer prehab can make a difference. It can help you stay stronger, tolerate your cancer treatments better have fewer complications."

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

Most people go as an outpatient. That may be at a cancer center, a hospital, or a rehab unit. Some people stay overnight, as an inpatient. That is more likely with advanced cancer, or with complex problems. You can have some services 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 or to a single specialist. Which one depends on your insurance coverage and your own needs.

This is the step most often missed. Rehab is rarely offered unless you ask for it.

The NCI describes vocational rehabilitation. These "specialists can help you find suitable jobs." They offer counseling. They offer "education and skills training." They also give "help in obtaining and using assistive technology and tools."

Federal patient material on brain tumors sets out no rehab protocol. NCI's summary of these tumors records the deficits. It 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 what fits your tumor.

• Which abilities is this tumor, or this treatment, most likely to affect?
• Can I start rehab before surgery? Should I see a physiatrist?
• 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
• National Cancer Institute — Cancer Support Services: https://www.cancer.gov/about-cancer/managing-care/finding-cancer-care/support
• American Cancer Society — What Is Cancer Rehabilitation?: https://www.cancer.org/cancer/supportive-care/what-is-cancer-rehabilitation.html