This information is about rare tumours that may occur in children. It is helpful to read it alongside our general information on children's cancer, which contains detailed information about cancers in children, their diagnosis and treatment, and the support services available.

All childhood cancers are rare, but there are a number of very rare types. These account for fewer than one in 30 of all childhood cancers and can be broadly categorised as:

• Tumours that normally only occur in adults. These include cancers of the digestive system, the thyroid, and the adrenal gland.
• Rare tumours which only occur in children. These include pancreatoblastoma, malignant rhabdoid tumours, and melanotic neuroectodermal tumours of infancy.
• Rare tumours in the head and neck area. For example, nasopharyngeal cancer.
• Rare hormonal/endocrine tumours. For example, phaeochromocytoma.
• Rare brain tumours. For example, meningioma.
• Rare skin tumours. These include melanomas.

In general, these rare cancers behave like the more common ones. They have the ability to keep on growing, and to spread to other parts of the body.

The causes of most rare childhood tumours are unknown. However, if other family members have had particular types of cancer, this may indicate an inherited faulty gene.

The treatment for rare cancers may involve surgery, chemotherapy or radiotherapy, or a combination of these.

Your child’s doctor will normally contact other specialists and discuss treatments that may have been used in similar cases. It will not usually be necessary for you to travel and visit other doctors for second opinions; your doctor can discuss results, or send on x-rays or samples of tissue from the tumour for other specialist doctors to review. The treatment recommended will usually be available within your own childhood cancer hospital.

If you have specific concerns about your child’s condition and treatment, it is best to discuss them with your child’s doctor, who knows the situation in detail.

It is always a difficult time for parents and doctors when a child has a very rare disease, as there is little information available to help with decisions about the most appropriate treatment, or for predicting the future.

Cancerbackup can give you information and support, and talk issues through with you. We can also give you details of any relevant support groups or organisations.

The Children’s Cancer and Leukaemia Group (CCLG) pays particular attention to rare tumours. It aims to improve the care and treatment of children with cancer. A specialist committee (The Rare Tumour Group) collects published information about rare cancers, and develops guidelines on the best ways of managing particular types of rare tumours. Members of this committee meet regularly to discuss their progress, and to develop new forms of treatment. They also liaise with colleagues in other countries.

As a parent, the fact that your child has cancer is one of the worst situations you can be faced with. You may have many different emotions, such as fear, guilt, sadness, anger and uncertainty. These are all normal reactions, and are part of the process that many parents go through at such a difficult time.

Your child may have a range of powerful emotions throughout their experience of cancer. Our booklet, Peppermint Ward is a storybook for younger children with cancer. It looks at the issues that they and their family may face, and helps them to explore their feelings. You can order the booklet online.

This section has been compiled using information from a number of reliable sources, including:

• Cancer in Children: Clinical Management (5th ed). Eds PA Voute et al. Oxford University Press, 2005.

For further references, please see the general bibliography.