Brain tumour care - supporting the transition into adulthood

Written by: Dr Helen Spoudeas
Edited by: Jay Staniland

Brain tumours in children are very rare; rarer than in adults. To put this into perspective, it is estimated that 1 in 750 people aged between 15 and 25 will have survived cancer, whereas only 1 in 3,000 will have had a brain tumour.

Brain tumours are often curable, with the cure rate being at around 80%, but patients have to live with the negative effects of the treatment, such as radiotherapy and chemotherapy, which affects their quality of life.

Consultant paediatric endocrinologist Dr Helen Spoudeas talks about the SUCCESS charity which she founded, and how it aims to provide multidisciplinary care to childhood brain tumour and brain cancer survivors.


Different types of brain tumour in children


Although they are very rare, children can be affected by two kinds of brain tumour: those that are located in the back part and the upper part of the brain, and those that are located deep in the middle of the brain. Malignant tumours such as medulloblastoma and ependymoma, which are frequently located in the back part and the upper part of the brain, and tumours such as gliomas, craniopharyngiomas, and pituitary adenomas, which are more often located deep in the middle of the brain close to vital pituitary, endocrine, visual and metabolic pathways. The latter are often less easily resectable, may recur and can also threaten life and wellbeing.

The strategy for treating brain tumours generally is surgical removal, followed by radiotherapy which gives an approximately 70% cure rate; if chemotherapy is added the cure rate increases to around 80%. The downside of this treatment, is that the tumour, along with the treatment, can have detrimental effects on the child’s health, and can even last into adulthood.


After the brain tumour is cured


Following brain tumour treatment, it doesn’t mean that the child will be completely well. They would likely still have the neurological and visual problems that resulted from the tumour, probably lose some intellectual ability, especially in those patients below the age of seven, they would lose their hair, they would develop growth hormone deficiency in almost every case, and will often go through an early puberty. If the tumour is deep-seated in the midbrain, more hormone deficiencies occur which are potentially life-threatening. There is little point in curing children of one life-threatening disease, simply to let them suffer another.

If chemotherapy is used, the child will have more side-effects from the treatment. Such effects include a higher chance of deafness, infertility, kidney problems, undernourishment, and an increase in their needs at school.

Radiotherapy given during the treatment for the brain tumour can cause problems with the endocrine system, which controls growth, puberty, development, breast feeding, and fertility. On top of this, the chemotherapy given can affect the glands around the body, again affecting fertility, kidney impairment, and cause heart toxicity.

It is also thought that vision impairment and hearing impairment affect up to 50% of children treated for a brain tumour.


The role of a multidisciplinary approach to care


With a brain tumour or brain cancer, often the only specialist involved in the case is an oncologist to treat the cancer. However, a multidisciplinary approach is needed to support the under-recognised acquired brain injury with support from a neurologist, endocrinologist and psychologist, regardless of the treatment received but especially in those treated most intensively and at the youngest ages. A child’s brain is adaptable, and with the right approach, can recover well following injury.

Often it is very difficult to know whether it is the illness, the tumour, the surgery, any tumour recurrence, the treatment and which treatment, that is causing the negative effects.

The role of SUCCESS is to try to provide high level neurorehabilitative aftercure care for children after they have gone through brain tumour treatment, care that is often not provided to a high enough standard once the tumour has been removed.

To make an appointment to see a paediatric endocrinologist, click here.

By Dr Helen Spoudeas
Paediatric endocrinology, diabetes & metabolism

Dr Helen Spoudeas is a highly-experienced, leading endocrinologist based in London. She is a paediatric endocrine subspecialist consultant, with 20 years' experience at both Great Ormond Street Hospital, the leading children's hospital in the UK, and at University College Hospitals.

Dr Helen Spoudeas is an international expert on the neuroendocrine effects of brain and pituitary tumours, particularly abnormalities of growth and development, hormone excess and deficiency.

Dr Spoudeas has published original research and articles in peer-reviewed literature, and has appeared as a guest speaker at national and international conferences on the topics of hormone secretion, growth, pubertal and fertility status after cancer therapies. Dr Spoudeas is a member of a multitude of reputable professional bodies.

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