Each year, fewer than 45 children in the UK develop malignant germ cell tumours. Most children who develop germ cell tumours will be cured.
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.
Germ cell tumours
Germ cell tumours can appear at any age. They develop from cells that produce eggs or sperm so germ cell tumours can affect the ovaries or testes. However, it is possible for a germ cell tumour to develop in other parts of the body.
As a baby develops during pregnancy, the cells producing eggs or sperm normally move to the ovaries or testes. However, occasionally they can settle in other parts of the body where they can develop into tumours. The most common places for this to happen are the bottom of the spine (sacrococcygeal), the brain, chest, and abdomen.
Germ cell tumours are sometimes given different names based on their characteristics. These include yolk-sac tumours, germinomas, embryonal carcinomas, mature teratomas and immature teratomas.
They may be non-cancerous (benign) or cancerous (malignant). Malignant tumours have the ability to grow and spread to other parts of the body.
Benign tumours do not spread but may cause problems by pressing on nearby tissue and organs.
Immature teratomas fall between benign and malignant. They can spread within the abdomen but not beyond, and can be removed with an operation.
The cause of germ cell tumours is unknown but research into the causes of different cancers is on-going.
Signs and symptoms
The symptoms depend on where the tumour develops. Usually it starts with a lump that can either be felt or causes other symptoms.
How germ cell tumours are diagnosed
Different tests may be needed to diagnose a germ cell tumour. Usually, the doctor will remove a sample of tissue from the lump (a biopsy) for examination under a microscope to find out if it is a cancer or not.
CT or MRI scans may be used to see the exact position of a tumour within the body. Chest X-rays may be taken to see if there’s a tumour in the lungs.
Germ cell tumours often produce proteins called tumour markers that can be measured in the blood. The ones that are produced by germ cell tumours are alpha-fetoprotein (AFP) and human chorionic gonadotrophin (HCG). Your child will have blood tests to check these tumour markers when they are being diagnosed. The doctors will continue to check these during treatment and after treatment is over.
Sometimes a germ cell tumour can be diagnosed with a tumour marker and scan results so that a biopsy isn’t necessary. This is particularly so if surgery is not needed for treatment, for example if the tumour is in the brain.
The stage of a cancer describes its size and whether it has spread from where it started. Knowing the stage helps doctors to decide on the most appropriate treatment.
Generally cancer is divided into four stages:
The cancer is small, has not spread and has been completely removed.
Stages 2 and 3
The cancer is larger and may not have been completely removed, or may have spread to nearby organs.
The cancer has spread to other parts of the body.
Cancer that has spread to distant parts of the body and formed new tumours is known as secondary or metastatic cancer.
The treatment your child will have usually depends on a number of factors, including the size, position and stage of the tumour. It usually includes either surgery or chemotherapy, or a combination of the two.
A benign tumour can be cured if it is removed by surgery. It may mean removing a testicle or an ovary if this is where the tumour started.
If the tumour is malignant and can be completely removed with surgery, chemotherapy is not always needed, especially if it began in the testis or ovary. If the tumour cannot be removed easily or has spread, your child will be given chemotherapy.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Germ cell tumours are very sensitive to chemotherapy. It’s usually given as injections and drips (infusions) into a vein.
A combination of drugs is usually given every three weeks for three or five months. The length of time chemotherapy is given for depends on the position of the tumour, the level of AFP, and whether or not the tumour has spread.
Treatment of malignant germ cell tumours in the brain is a little different. Although they are very sensitive to chemotherapy, treatment with radiotherapy is also needed. Radiotherapy is the use of high-energy rays to destroy cancer cells. Unlike germ cell tumours elsewhere in the body, it’s not always necessary to remove germ cell tumours in the brain with surgery.
Side effects of treatment
Treatment often causes side effects, and your child’s doctor will discuss these with you before treatment starts. The operation your child has will be individually planned to try to reduce any possible problems. The surgeon and specialist nurse will discuss this with you.
The side effects of chemotherapy usually gradually improve when treatment is over and many of them can be well controlled.
The side effects of treatment depend on the drugs used but can include:
- feeling sick (nausea) and being sick (vomiting)
- hair loss
- increased risk of infection
- bruising and bleeding
Late side effects
A small number of children may develop long-term side effects of treatment, sometimes many years later. These are not common but may include problems with how the kidneys or lungs work and some hearing loss. Your child’s specialist doctor or nurse will tell you more about any possible late side effects.
If your child has only one ovary or testis removed, they’ll usually still be able to have children in the future.
Many children have their treatment as part of a clinical research trial. Trials aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version. Specialist doctors carry out trials for children’s cancers. If appropriate, your child’s medical team will talk to you about taking part in a clinical trial and will answer any questions you have. Written information is often provided to help explain things.
Taking part in a research trial is completely voluntary, and you’ll be given plenty of time to decide if it’s right for your child.
Sometimes, clinical trials are not available for your child’s tumour. This may be because a recent trial has just finished, or because the tumour is very rare. In these cases, you can expect your doctors and nurses to offer treatment which is agreed to be the most appropriate, using guidelines which have been prepared by experts across the country. The Children’s Cancer and Leukaemia Group (CCLG) is an important organisation which helps to produce these guidelines.
Your child will continue to have regular blood tests during and after treatment, to check their levels of AFP and HCG. If the levels rise, this indicates that the tumour might have come back and further treatment is needed.
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 the situation in detail.
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 with cancer. The Parent’s Guide discusses these further and talks about how you can support your child.