Rare tumours of childhood

Types of rare childhood cancer Back to top

All childhood cancers are rare, but there are a number of very rare types. These account for fewer than 1 in 30 of all childhood cancers and can be broadly categorised as:

• tumours that normally only occur in adults, including cancers of the digestive system, the thyroid and the adrenal gland
• rare tumours that only occur in children, including pancreatoblastoma, malignant rhabdoid tumours and melanotic neuroectodermal tumours of infancy
• rare tumours in the head and neck area, such as nasopharyngeal cancer  
• rare hormonal/endocrine tumours, such as phaeochromocytoma
• rare brain tumours, such as meningioma
• rare skin tumours, including 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.

Causes Back to top

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.

Treatment Back to top

The treatment for rare cancers may involve surgery|, chemotherapy|, 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.

Coping with a rare cancer Back to top

It's 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.

Our cancer support specialists| 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|.

Research Back to top

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 called 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.

Your feelings Back to top

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 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.

It's not possible to address here all of the feelings you may have. However, the booklet A parent’s guide to children’s cancer  talks about the emotional impact of caring for a child with cancer and suggests sources of help and support.

Your child may have a variety of powerful emotions| throughout their experience of cancer. The parent's guide discusses this further and talks about how you can support your child|. 

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 explore their feelings. 

Useful organisations Back to top

References Back to top

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

• Voute PA, et al. Cancer in Children: Clinical Management. 5th edition. 2005. Oxford University Press.
• Pinkerton R, et al. Evidence-based paediatric oncology. 2nd edition. 2007. Blackwell Publishing.
• Neville K, Steuber C. Clinical assessment of the child with suspected cancer.  (accessed September 2010).