Rare tumours 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, and we can now also work to reduce the after-effects of having had cancer in the past.
It is devastating to hear your child has cancer, and at times it can feel overwhelming, but 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, and if you have any questions it is important to ask the specialist doctor or nurse who knows your child’s individual situation.
This factsheet is published in conjunction with CCLG’s booklet entitled: ‘Children and Young People with Cancer: A Parent’s Guide’.
You may also find it helpful to read this information alongside our 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 childrenBack to top
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.
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.
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.
Clinical trials are usually not available as the number of children with rare cancers is so small. The Children’s Cancer and Leukaemia Group (CCLG) aims to improve the care and treatment of children with cancer and it develops guidelines on the best ways of treating and managing those with rare tumours. Doctors communicate with specialist colleagues in other countries to promote research in rare tumours and develop new forms of treatment.
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 in this factsheet all of the feelings you may have. However, the CCLG booklet ‘Children and Young People with Cancer: A Parent’s Guide’, 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 these further and talks about how you can support your child.
Children's Cancer and Leukaemia Group (CCLG)
CCLG supports the 1,700 children who develop cancer each year in the UK. It gives support to healthcare professionals involved in caring for children with cancer and is key to the development of high standards of care.
CLIC Sargent offers practical support to children and young people 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).
- Schneider, D. et al. Rare tumours in childhood and adolescents. 2012. Springer Heidelberg.
- Pizzo P, et al. Principles and Practice of Paediatric Oncology. 7th edition. 2016. Lippincott Williams & Wilkins.
Our children’s cancer information is written by the Children’s Cancer & Leukaemia Group (CCLG). It has been reviewed and edited by their publications committee, which includes medical experts from all fields of children’s cancer and care.