Supportive care for brain and spinal cord tumours

Supportive care helps people meet the physical, practical, emotional and spiritual challenges of brain and spinal cord tumours. It is an important part of cancer care. There are many programs and services available to help meet the needs and improve the quality of life of people living with a brain and spinal cord tumour and their loved ones, especially after treatment has ended.

Recovering from a brain or spinal cord tumour and adjusting to life after treatment is different for each person, depending on the extent of the disease, the type of treatment and many other factors. The end of cancer treatment may bring mixed emotions. Even though treatment has ended, there may be other issues to deal with, such as coping with long-term side effects. The neurological symptoms and complications produced by brain and spinal cord tumours are very disabling and can severely affect quality of life.

A person who has been treated for a brain or spinal cord tumour may have the following concerns.

How a person feels about themselves is called self-esteem. Body image is how a person sees their own body. A brain or spinal cord tumour and its treatments can affect a person’s self-esteem and body image. Often this is because the tumour or treatments may result in body changes, such as:

• 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

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

For many people, body image and how they think other people see them is closely linked to self-esteem. It may be a real concern for them and can cause considerable distress. They may be afraid to go out, be afraid others will reject them, or feel angry or upset, even if the effects of treatment may not show on the outside of the body.

Find out more about how to cope with problems of self-esteem and body image.

Brain tumours, or their treatment, can cause seizures. (Spinal cord tumours do not cause seizures.) Seizures occur because of abnormal electrical signals in the brain. Some seizures are mild and may not be noticed, while others have more obvious signs and symptoms. 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.

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.

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.

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

Cognitive problems or changes are a significant and distressing effect of brain tumours. You may experience some type of cognitive problem because of the tumour, its progression or side effects of treatments like surgery or radiation therapy. You may, or may not, be aware of the differences in your personality and thinking.

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 family 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, you are coughing or gagging when swallowing or you have trouble talking. A referral will be made to a speech-language pathologist or speech therapist who can assess and teach you how to manage your 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 daytime impairment. Sleep problems include insomnia, abnormal behaviours, movements or emotions during sleep, and 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.

Emotional health is a concern to people with brain and spinal cord tumours. Increased emotional reactions, lower frustration tolerance, depression, anxiety and lessened family functioning can occur.

Anxiety and depression are normal responses to the diagnosis of a brain or spinal cord tumour and the disabilities it may cause. Cognitive changes may make it difficult for you to understand and cope with these emotions.

There is no one way to deal with your emotions. One day you will feel better and then uneasy again the next day. Everyone doesn’t have the same feelings but all will experience a range of emotions. Discuss your feelings with your doctor who will decide if you need to talk with a counsellor about your emotional health.

See a list of questions to ask your doctor about supportive care after treatment.