Supportive care helps children meet the physical, practical, emotional and spiritual challenges of brain and spinal cord cancer. 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 children living with cancer and their loved ones, especially after treatment has ended.
Recovering from brain and spinal cord cancer and adjusting to life after treatment is different for each child, 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. A child who has been treated for brain and spinal cord cancer may have the following concerns.
Radiation therapy to areas around the pituitary gland and hypothalamus can reduce the amount of hormones that the pituitary gland releases.
The brain tumour, or its treatment, can cause changes in a child’s ability to think and reason (neurocognitive ability). These changes could include:
Neurocognitive changes can affect a child’s education and future financial and employment opportunities. Neuropsychologists (psychologists with specialized knowledge in childhood neurocognitive issues) should be part of the child’s healthcare team. Neuropsychologists can do an in-depth assessment of the child’s neurocognitive abilities and identify problem areas and challenges that the child may have. Together with the child’s teachers, an individualized plan can be developed to ensure that the child has the help, support and resources needed to cope with these changes. For further information, please refer to School Issues.
After children have been treated for a brain tumour, they may need to adjust to a number of physical changes. Depending on the location of the tumour and how it was treated, these changes may include the following.
Surgery on a brain tumour may cause a change in the child’s muscle strength and physical coordination. Depending on the location of the tumour and the extent of the surgery, paralysis may be a concern. The surgeon will try to avoid this if at all possible. Physical or occupational therapists are specialists in rehabilitation that will help the child regain as much coordination and strength as possible or adjust to paralysis, if necessary.
Radiation to the spine may slow the growth of the spinal cord and the bones in the spine. This could result in a shortened body height, while the child’s arms and legs grow to their normal length. Younger children are more vulnerable to these effects of radiation. Therefore, doctors will try to avoid giving radiation to children under the age of 3 years.
Tumours on the brain stem or their treatment may affect a child’s ability to swallow. Some children may only have a decreased gag reflex, but can still swallow. Others may not be able to swallow at all and may have to get their nutrition through a feeding tube. Speech therapists and occupational therapists can help with rehabilitation to improve the child’s ability to swallow and take foods orally again.
Tumours along the optic nerve or their treatment can affect a child’s vision in a number of ways. The child’s vision may be decreased, blurry or doubled. Cataracts may form if the eyes were in the direct path of radiation. Occupational therapists may be able to help the child adjust to vision problems. It may help for a child who has double vision (diplopia) to wear a patch over one eye to reduce the discomfort and headaches that often come with seeing double. Eye surgeons may be able to remove cataracts caused by radiation and restore the child’s vision.
Chemotherapy treatment with cisplatin (Platinol AQ) can result in hearing loss where the child can’t hear high-pitched (high-frequency) sounds like shrill whistles or birds chirping. Long-term use of cisplatin could result in the child not being able to hear lower-pitched sounds like voices. Radiation could also cause a certain amount of hearing loss. A hearing specialist (audiologist) will monitor the child’s hearing. Usually hearing loss is not reversible, but the child will get help to cope and adjust to this. Special programs will allow children with hearing loss to remain in school and complete their education.
Surgery on tumours in the back part of the brain (posterior fossa) sometimes causes posterior fossa syndrome (PFS). The main problem of PFS is the child’s inability to speak. This is called temporary mutism or cerebellar mutism. PFS is also associated with rapidly changing emotions (emotional lability), diminished muscle tone (hypotonia) and lack of muscle coordination (ataxia).
PFS, especially the child’s inability to speak, usually develops within the first few days after surgery. This can be frightening and frustrating for the child. It is important for children to know that they will be able to speak again, although it may take weeks or months for their speech to return. Sometimes parents say their child’s speech sounds different than it did before surgery. A speech therapist can help children with PFS regain their speech. Many children with PFS experience significant, if not complete recovery.
Treatment may cause delayed or early puberty. When puberty starts earlier than usual, it is called precocious puberty. This means that sexual development, such as body hair, breast enlargement, menstruation and enlargement of the scrotum, happen at a very early age. This can be difficult and embarrassing for a child when none of his or her other friends are going through this physical development at the same time.
Chemotherapy and radiation therapy, given together or separately, can cause infertility in teenagers with brain tumours. The healthcare team will discuss the impact of treatment on sexual development and fertility with the parents and the teenager (if appropriate) before treatment is started.
Treatment for childhood brain and spinal cord cancer causes a small but increased risk of developing a second cancer. The level of risk depends on different factors, such as the type of the first cancer and the type of treatments given for that cancer. Children who received radiation therapy tend to have a higher risk of a second cancer in the area that was treated.