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, pleuropulmonary blastomas 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
Watch expert Dr Amos Burke, Consultant Paediatric Oncologist and CCLG member, explain more about rare cancers in children.
Causes
The causes of most rare childhood cancers are unknown. If other family members have had particular types of cancer, this may sometimes suggest that there is an inherited gene in the family. If this is a possibility, your child’s specialist will talk to you about it.
Treatment
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.
Across Europe, there is now a body of experts in rare tumours for children who have a system to discuss difficult cases with standard guidance on how they should be treated. This is a big improvement in care over the last five years.
Surgery
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 before surgery. They may also be used if an operation is not possible.
Radiotherapy
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
Chemotherapy is the use of anti-cancer 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.
Research and treatment guidelines
Clinical research trials may not be available for your child’s particular tumour due to the small number of children with rare cancers.
Your child’s doctor will offer the most appropriate treatment, using guidelines which have been agreed by experts across the UK. Children’s Cancer and Leukaemia Group (CCLG) is an important organisation which helps to produce these guidelines.
Doctors also communicate with specialist colleagues in other countries to promote research in rare tumours and develop new forms of treatment.
Late side effects
Months or years later some children may develop late side effects from the treatment they have had. These may include a reduction in bone growth, a change in the way the heart, lungs and kidneys work, a risk of infertility and a small increase in the risk of developing another cancer in later life. It is important to understand that not all late effects will happen to all patients. You can find more information in our Living beyond cancer resources.
Your child’s doctor or nurse will talk to you about any possible late side effects and will keep a close eye on possible long-term side effects in follow-up clinics.
Follow-up care
Once treatment has finished, the doctors will monitor your child closely with regular appointments to be sure that the cancer has not come back and there are no complications. After a while, you will not need to visit the clinic so often.
If you have specific concerns about your child’s condition and treatment, it’s best to discuss them with your child’s doctor, who knows their situation in detail.