Germ cell tumours

This is a tumour which has started in the germ cells. These are cells in the testis, or cells in the ovary which normally develop into a baby in the womb.

In this section

During development, some germ cells become abnormal and later produce a tumour. This tumour usually develops in the ovary and testis but can also form in the abdomen, chest, lower spine or brain.

The tumour may be called by different names that describe where it started or what it looks like under the microscope, such as, yolk sac tumour, dysgerminoma and teratoma. These tumours may be benign (non-cancerous) or malignant (cancerous).

Who gets a germ cell tumour?

About 45 children develop a germ cell tumour in the UK each year. These tumours can occur at any age. The cause of germ cell tumours is unknown.

Signs and symptoms

The symptoms depend on where the tumour develops. Usually a lump appears which can be felt, for example: swelling of a testis, abdominal swelling or the lump may cause other symptoms.

Tests/investigations

We will need to carry out some tests to find out as much as possible about the type, position and size of the tumour. These tests include:

  • Blood tests – germ cell tumours often produce hormones which can be measured in the blood; these are called ‘tumour markers’
  • Chest X-ray to see whether there is any tumour in the lungs
  • Ultrasound scan – this is usually done if your child has abdominal or testicular swelling.
  • CT scan or MRI scan to tell us the exact position of any tumour within the body
  • Biopsy – a small operation, usually under general anaesthetic, to remove a small piece of the tumour; if the tumour is localised and can be easily removed then this will be carried out at diagnosis
  • Bone scan – this can tell us if the tumour has spread to the bones (metastases); a mildly radioactive dye is injected which is harmless, then a scan is taken

Staging

Staging refers to the size of the tumour and whether it has spread. Knowing the stage of the cancer helps the doctors decide on the most appropriate treatment for your child. We use the following staging system for germ cell tumours:

  • Stage I: small localised tumour that has not spread
  • Stage II: larger localised tumour that has not spread
  • Stage III: localised tumour with involvement of lymph nodes
  • Stage IV: tumour has spread to other parts of the body

Treatment of germ cell tumours

The treatment for germ cell tumours depends on the size, position and stage of the tumour. This usually involves surgery and sometimes chemotherapy (anti-cancer therapy).

If the tumour is benign and can be removed completely then no further treatment is needed. If the tumour is malignant and can be removed completely then chemotherapy may still be needed if the tumour is large or there are some cancer cells left behind. In all other situations chemotherapy and possible further surgery will be needed.

Chemotherapy

A combination of anti-cancer drugs is used to destroy the cancer cells. The treatment is usually given every few weeks. The exact combination and number of courses of chemotherapy depends on the response to treatment.

If your child takes part in a clinical trial, the treatment is explained in more detail in the specific trial information sheet. An outline of the treatment will be provided in the form of a ‘road map’.

Clinical trials

Clinical trials are medical research trials involving patients that are carried out to try and find new and better treatments. In cancer, clinical trials are most commonly used to try and improve different forms of treatment such as surgery, radiotherapy or chemotherapy.

The treatment being tested may be aimed at:

  • Improving the number of people cured (for example, trying new types of surgery or chemotherapy)
  • Improving survival
  • Relieving the symptoms of the cancer
  • Relieving the side effects of treatment
  • Improving the quality of life or sense of well-being for people with cancer
  • Clinical trials may also involve research aimed at understanding more about the tumour’s biology. You may be asked to allow us to do research on the tumour sample removed at surgery, or on blood samples

Well-run clinical trials have led to a significant improvement in the treatment of children with cancer. You can find more general information on clinical trials in the separate information sheet. If you are asked to consider entering your child into a clinical trial you will be given specific information about the trial before deciding whether to take part.

Effects of treatment

The prognosis is good for germ cell tumours. Most children are cured.

General side effects of chemotherapy

Bone marrow suppression (myelosuppression)

Chemotherapy drugs decrease the production of blood cells by the bone marrow for a variable period of time. This results in low red blood cells (anaemia), low white blood cells (neutropenia) and platelets (thrombocytopenia). Your child may need blood or platelet transfusions and will be at increased risk of infections. The doctors and nurses caring for your child will tell you more about these side effects.

Nausea and vomiting

Some of the chemotherapy drugs used may make your child feel sick or vomit. We will give anti-sickness drugs at the same time to stop nausea and vomiting. These are usually very effective.

Hair loss

Temporary hair loss is common.

Specific drugs

For details of the side effects of individual drugs please see Macmillan specific drug information leaflets.

What are the possible long-term effects of treatment?

A small number of children develop side effects many years later because of the treatment they have received. These include problems with puberty and fertility, hearing problems, impaired lung function and a small risk of developing a second cancer later in life. Provided only one testis or ovary is removed then your child should still be able to have children when they grow up.

About five years after treatment finishes we will transfer your child’s care to our long term follow-up clinic. Your child will be seen at regular intervals in this clinic, indefinitely, so that we can help with any long term effects of the treatment.