Supportive care for brain and spinal cord tumours

Supportive care helps with the physical, practical, emotional and spiritual challenges of cancer. This important part of cancer care focuses on improving the quality of life of people with cancer and their loved ones, especially after treatment has ended.

Adjusting to life after treatment is different for everyone. Your recovery will depend on many different factors, including the type of brain or spinal cord tumour, the treatment you had and its side effects. Neurological symptoms and complications from brain and spinal cord tumours can be disabling and can severely affect quality of life.

If you have been treated for a brain or spinal cord tumour, you may have the following concerns.

A seizure is a sudden abnormal burst of electrical activity in the brain that temporarily interrupts the normal working of the brain. Brain tumours or their treatment can cause changes in the brain's electrical system.

Symptoms of a seizure can include:

• arm or leg twitching
• confusion
• eye blinking or staring
• changing emotions, especially becoming anxious or fearful
• physical convulsions (severe shaking movements)
• loss of consciousness

Most seizures are controlled with medicines. Your healthcare team will decide how long you will need to be on antiseizure medicines (anticonvulsants) based on your seizure history.

Not everyone diagnosed with a brain tumour will have seizures. Spinal cord tumours do not cause seizures.

Cognitive problems or changes are a significant and distressing effect of brain tumours. You may experience cognitive problems because of the tumour, its progression or side effects of treatments like surgery or radiation therapy. You may or may not be aware of changes to your personality and thinking, but people close to you will likely notice. Changes to personality can be one of the hardest changes for people with a brain tumour and their loved ones to cope with.

Cognitive rehabilitation may help you regain the mental skills of thought, reason, perception and memory or help you cope with changes in your cognitive function. Counselling may help you and your loved ones adjust to the changes.

Find out more about cognitive problems.

Brain tumours may affect a person’s ability to speak and swallow. Talk to your healthcare team if you feel like food is sticking in your throat, if you are coughing or gagging when swallowing, or if you have trouble talking. They can refer you to a speech-language pathologist (also called a speech therapist) who can assess and teach you how to manage swallowing and speech problems.

Find out more about difficulty swallowing.

Most people with brain tumours have significant fatigue during their illness. Sleep-wake disturbance is a change in sleep during the night, which is followed by problems functioning well during the day.

Sleep problems include:

• not being able to sleep (insomnia)
• sleepwalking
• restless sleep
• emotional reactions during sleep
• sleep-related breathing disorders

A combination of medicines and cognitive therapy may be used to manage sleep-wake disturbance.

Find out more about sleep problems.

Brain and spinal cord tumours and their treatments can affect your normal physical abilities by causing problems such as:

• complete or partial paralysis
• muscle weakness
• difficulty walking
• problems with balance and coordination

Physiotherapy and occupational therapy may help in your physical rehabilitation.

Physiotherapy helps you get back to your normal levels of mobility and physical activity while preventing further problems. It is provided by a physiotherapist. Physiotherapy is important if you have lost muscle tone, have trouble with balance, or need to use canes or other assistive devices.

Occupational therapy helps you prevent and live with illness, injury and disability. An occupational therapist will assess, treat and help you manage physical, mental and cognitive problems related to the cancer or cancer treatment. They are trained to assess the layout of your home, school or workplace and suggest ways to improve your mobility and help you cope with daily activities.

Self-esteem is how you feel about yourself. Body image is how you see your own body. They are often closely linked. Brain and spinal cord tumours and their treatments can affect your self-esteem and body image. Often this is because cancer or cancer treatments change your body in different ways, including:

• physical changes such as difficulty walking and problems with coordination and balance
• cognitive problems such as changes in personality, thinking, understanding and memory
• hair loss after radiation therapy
• difficulty with speech and swallowing
• scars and redness on the scalp after surgery or radiation therapy

Some of these changes can be temporary. Others can last for a long time or be permanent.

But treatment can affect your self-esteem or body image even if it does not affect how you look. Other people may not be able to see changes to your body, but you may still worry about how they now see you. This may affect your self-esteem, making you feel angry or upset, afraid to go out or worried that others will reject you.

Find out more about coping with body image and self-esteem worries.

Having many emotions is a normal part of having cancer. Brain tumours can also cause changes in personality and mood. Many people have increased emotional reactions – sometimes anger and frustration, other times sadness or happiness. Brain tumours can increase the risk of depression and anxiety. Cognitive changes may make it difficult for you to understand and cope with these emotions.

Find out more about your emotions and cancer.

You may be concerned about being able to drive when you have a brain or spinal cord tumour.

You may not be able to drive for a period of time after you’ve been diagnosed, especially if you have had seizures or problems with your vision, coordination and movements.

Driving laws are different in each province and territory. Check with the driving license agency in your area to find out more about the laws that apply to you.

To make decisions that are right for you, ask your healthcare team questions about supportive care.