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 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:  eg nasopharyngeal cancer  
• rare hormonal/endocrine tumours: eg phaeochromocytoma
• rare brain tumours:  eg 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.

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| 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.

Coping with a rare cancer Back to top

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.

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 (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 is not possible to address all of the feelings you may have on this fact sheet. However, our booklet, A parent’s guide to children’s cancers| , talks about the emotional impact of caring for a child with cancer, and suggests sources of help and support.

Your child may have a range 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 to explore their feelings.

Useful organisations Back to top

CLIC Sargent

Griffin House, 161 Hammersmith Road, London W6 8SG

Tel 0800 197 0068

Email helpline@clicsargent.org.uk|

www.clicsargent.org.uk|

Offers practical support nationally, to children and young people aged 21 and under with cancer or leukaemia, and their families.

 

Children's Cancer and Leukaemia Group (CCLG)

University of Leicester, 3rd Floor, Hearts of Oak House,

9 Princess Road West, Leicester LE1 6TH

Tel 0116 249 4460

Email info@cclg.org.uk|

www.cclg.org.uk|

Coordinates research and care for children and their parents. There are 21 CCLG specialist centres for the treatment of childhood cancer and leukaemia, covering all areas of the UK and Ireland. A map of the centres is on its website. All of the group's activities are coordinated within the central office in Leicester. Information about the CCLG and childhood cancer and leukaemia resources can be obtained from the address above.

References Back to top

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

• PA Voute et al. Cancer in Children: Clinical Management. 5th edition. 2005. Oxford University Press.
• R Pinkerton et al. Evidence-based paediatric oncology . 2nd edition. 2007. Blackwell Publishing.

For further references, please see the general bibliography| .