Rare tumours

Introduction

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 that 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.

Types of rare cancers in children

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

Causes

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

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.

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 sometimes 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 (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.

Research

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.

Your feelings

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 CCLG booklet Children & Young People’s 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.