Rare cancers in children
Childhood cancers are rare, but there are a number of very rare types.
More children than ever are surviving childhood cancer. There are new and better drugs and treatments. But it remains devastating to hear that your child has cancer, and at times it can feel overwhelming. There are many healthcare professionals and support organisations to help you through this difficult time.
Understanding more about the cancer your child has and the treatments that may be used can often help parents to cope. We hope you find the information here helpful. Your child's specialist will give you more detailed information. If you have any questions it’s important to ask the specialist doctor or nurse who knows your child’s individual situation.
This information is about rare cancers (tumours) that may affect children. You may also find it helpful to read the section on children’s cancers, which contains more information about cancers in children, their diagnosis and treatment, and the support services available.
Types of rare cancers in children
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Rare cancers in children make up fewer than 1 in 30 of all childhood cancers and can broadly be grouped as:
rare cancers that only affect children, such as pancreatoblastoma, malignant rhabdoid tumours and melanotic neuroectodermal tumours of infancy
cancers that usually only affect adults, such as cancers of the digestive system, the thyroid and the adrenal gland
rare cancers in the head and neck area, such as nasopharyngeal cancer
rare hormonal/endocrine cancers, such as phaeochromocytoma
rare brain tumours, such as meningioma
rare skin cancers, such as melanomas.
You can contact The Children's Cancer and Leukaemia Group (CCLG) for their booklet Brain and spinal tumours - a parent’s guide for more information about brain and spinal cord tumours.
Causes of rare cancers in children
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The causes of most rare childhood cancers are unknown. But if other family members have had particular types of cancer, this may sometimes suggest that there is an inherited faulty gene in the family. If this is a possibility, your child’s specialist will talk to you about it.
Treatment for rare cancers in children
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Rare cancers are treated with the same treatments used for other childhood cancers. This includes surgery, radiotherapy and chemotherapy. Your child may need a combination of these treatments.
Usually an operation is done to remove all or as much of the cancer as possible. Other treatments, such as radiotherapy or chemotherapy, may be given after or sometimes before surgery. They may also be used if an operation isn’t possible.
Radiotherapy uses high-energy rays to destroy the cancer cells, while doing as little harm as possible to normal cells. It can be used to treat any cancer cells that may be left behind after surgery, or to shrink a cancer.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is usually given as injections and drips (infusions) into a vein. Chemotherapy may be used to lower the risk of the cancer coming back or to treat cancer that has spread to other parts of the body.
Coping with a rare cancer
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It's always a difficult time for parents when a child has a rare disease. You may want to contact our cancer support specialists. We 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 for rare cancers in children
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The Children’s Cancer and Leukaemia Group (CCLG) aims to improve the care and treatment of children with cancer. They have a committee of specialists called The Rare Tumour Group who collect published information about certain rare cancers. They develop guidelines on the best ways of treating and managing them.
The committee meet regularly to discuss progress and to develop new forms of treatment. They also communicate with specialist 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 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 in this section all of the feelings you may have. However, our section on 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 variety of powerful emotions throughout their experience of cancer. Our section on children’s cancers discusses this further and talks about how you can support your child.
Children's Cancer and Leukaemia Group (CCLG)
CCLG 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 (there's a map of the centres on its website). Has information about the CCLG, childhood cancer and leukaemia.
CLIC Sargent offers practical support to children and young people aged 21 and under with cancer or leukaemia, and to their families.
This section has been compiled using information from a number of reliable sources, including:
Neville K, Steuber C. Clinical assessment of the child with suspected cancer. (accessed September 2012).
Pinkerton R, et al. Evidence-based paediatric oncology. 2nd edition. 2007. Blackwell Publishing.
Pizzo P, et al. Principles and Practice of Paediatric Oncology. 6th edition. 2011. Lippincott Williams & Wilkins.
With thanks to: Dr Bernadette Brennan, Consultant Paediatric Oncologist; and the people affected by cancer who reviewed this edition. Reviewing information is just one of the ways you could help when you join the Cancer Voices network.
We worked with the Children's Cancer and Leukaemia Group (CCLG) to write our information about children's cancer.