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Germ cell tumours

Germ cells are the type of cells that develop into eggs (in the ovaries) or sperm (in the testicles). Germ cell tumours affect these germ cells.

Germ cell tumours can develop before or after birth. They can form in the ovaries or testicles, or in other parts of the body. This is because sometimes, when babies are in the womb, germ cells travel to other parts of the body. Germ cell tumours can release hormones or enzymes that can cause symptoms.

Germ cells tumours are named for where they are formed:

  • gonadal germ cell tumours form in the ovaries or testicles
  • intracranial or intraspinal germ cell tumours form in the brain or spinal column
  • extracranial, extragonadal germ cell tumours tend to form along the midline of the body, such as
    • in the bottom of the spine
    • at the back of the belly
    • between the lungs
    • on the neck.

Germ cell tumours can be one of three types.

Mature teratomas

Mature teratomas are benign tumours that are not likely to become cancerous. They usually occur:

  • in the bottom part of the spine in babies
  • in the ovaries of girls when they reach puberty.

Mature teratomas are the most common type of extracranial germ cell tumours.

Immature teratomas

Immature teratomas might become cancerous. They usually occur in the same places as mature teratomas:

  • in the bottom part of the spine in babies
  • in the ovaries of girls when they reach puberty.

They can contain several types of cells, such as bone, hair and muscle.

Malignant germ cell tumours

Malignant germ cell tumours are cancerous. They are divided into germinomas and nongerminomas, depending on the type of hormone they release.

Germinomas are the most common type of intracranial germ cell tumour.

 

Chance of a cure

One of your biggest concerns on learning your child has cancer may be about their chance of being cured.

Due to major advances in treatment, many children treated for cancer now survive into adulthood. Children diagnosed with cancer between 2004 and 2012 have a 5-year survival rate of 85%. In the 1980s, the 5-year survival rate for all cancers was about 73%.1

Talk to your child’s doctor about your child’s diagnosis, treatments and long-term survival. Long-term survival is also called the outlook or prognosis. It on depends several things, including:

  • age of your child at diagnosis
  • extent or stage of the cancer
  • how the cancer cells look under a microscope (the shape, function and structure of the cells)
  • how the cancer responds to treatment
  • cancer or tumour biology, which includes
    • the patterns of the cancer cells
    • how different the cancer cells are from normal cells
    • how fast the cancer cells are growing.

To learn more about survival for germ cell tumours in children, visit Australian Cancer Childhood Statistics Online

References

[1] https://cancerqld.blob.core.windows.net/content/docs/Childhood-Cancer-in-Australia-1983-2015.pdf

 

Clinical trials

It’s possible that your child may be able to be part of a clinical trial. Clinical trials are research investigations to test new treatments, interventions or tests, as a way to prevent, detect, treat, or manage various diseases or medical conditions. The patients involved in clinical trials are volunteers.1

With regard to cancer, researchers run clinical trials to test new ways to:

  • treat cancer
  • find and diagnose cancer
  • manage cancer symptoms and treatment side effects.

If a trial is available, taking part in one will be entirely the family’s decision.

It’s important to note that any new treatments are strictly regulated and must be approved before they can be used in a clinical trial. Your child’s doctor will explain everything about the trial and give you detailed written information.  If you wish your child to be part of the trial, you will need to give permission.

Participating in a clinical trial may or may not directly benefit your child. But the results of clinical trials today help children with cancer in the future. If you’re interested in participating in a clinical trial, ask your child’s doctor if there are any suitable for your child.

You can find further information on our Clinical trials and research page.

References

[1] https://www.australianclinicaltrials.gov.au/what-clinical-trial

 

Diagnosis

When your child is diagnosed with cancer, it can feel overwhelming This phase involves finding out if your child has cancer, and determining the type of cancer they have. Children’s cancer can be difficult to diagnose, as many symptoms are similar to those caused by less serious conditions, or injuries. This means that your child may need several tests and medical appointments before you receive confirmation that your child has cancer.

If your doctor thinks your child has a germ cell tumour, your child will have several tests which may include:

  • medical history and physical exam, including a neurological exam
  • eye exam
  • blood tests
  • medical imaging, such as
    • X-ray
    • ultrasound
    • computed tomography (CT) scan
    • magnetic resonance imaging (MRI)
  • biopsy, with tests for genetic changes to help find the best way to treat your child
  • lumbar puncture (spinal tap).

Our section, How is cancer diagnosed? explains these tests in more detail.

Staging

Doctors use staging to describe how much the cancer has grown. Some of the tests will also help to stage the tumour. Staging measures or is determined by:

  • where the tumour is
  • how big the tumour is
  • if the tumour has spread to other parts of the body.

Your doctor will use this information to determine the best way to treat the disease. Staging will also give your doctor an idea of how well these treatments are likely to work (prognosis).

Doctors have no standard staging system for germ cell tumours in the brain. Instead, they stage tumours based on a range of factors. They classify the factors into different risk groups.

For other types of germ cell tumours, how doctors assess the stage or extent of the cancer varies. For more information about staging, see the publications from the National Cancer Institute.

Doctors often describe germ cell tumours that are not in the brain in four stages:

  • Stage I – the tumour is only in one place in the body. Surgery has removed it fully.
  • Stage II – the cancer has spread to the organ’s outer covering, or to nearby lymph nodes. Surgery has removed all visible cancer, but some cancer cells remain.
  • Stage III – surgery cannot remove all the visible cancer, or it has spread to the lymph nodes.
  • Stage IV – the cancer has spread to other parts of the body. These can include the lungs, liver, brain or bone.

 

Risk factors

A risk factor is anything that increases a person’s chance of getting a certain condition or disease. Researchers know about some risk factors that increase the chance of developing cancer. However, for most children with cancer, the cause is unknown.

What we do know is that if a child develops cancer, it’s not because of something they, or their parents did to cause it. No one is to blame if a child develops cancer.

Even if your child has a risk factor, it doesn’t mean they will develop cancer. Many children with a risk factor will never develop cancer, while most children with cancer have no known risk factors. Even if a child with a risk factor develops cancer, the risk factor may not have had much to do with it.

Researchers do not completely understand what causes germ cell tumours. But they link some things with a higher chance of developing germ cell tumours.

Genetic conditions

Genetic conditions that affect the sex chromosomes can increase your child’s chance of getting a germ cell tumour. These include:

  • Klinefelter syndrome
  • Swyer syndrome
  • Turner syndrome.

If your child has one of these genetic conditions, they will need specific care. Your health care team will talk to you about which ongoing tests your child will need.

Childhood cancers with links to genetic conditions may also affect the risk for other family members. You can ask your child’s treatment team if you or your family should get genetic counselling.

To learn more about genetic conditions, see the children’s cancer glossary or the Centre for Genetics Education.

Other factors

Male children who have an undescended testicle may have a higher chance of getting testicular germ cell tumours.

 

Support and more information

A diagnosis of cancer in a child is difficult for your family. It’s normal for you and your family to feel overwhelmed, scared, anxious or angry.

If or others around you are having trouble coping, make sure you speak to your child’s treatment team. They have helped and supported many other families who have been through what you’re currently going through. Sometimes just letting other people know how you’re feeling helps you feel less alone. If you feel supported, then you will feel more able to support your child.

Most children’s hospitals will allocate a social worker to each family to provide support throughout treatment. If you need support, contact your hospital-based social worker to let them know how you’re feeling and to see what support can be made available to you and your family, including music therapists, play therapists or education support staff.

The following webpages and organisations also offer support and/or extra information for kids with cancer and their families:

  • Living with children’s cancer has information about physical, emotional and practical issues during and after diagnosis and treatment.
  • Organisations that can provide support and information.
  • Redkite is a national organisation that provides emotional support, financial assistance, information and resources to families who have a child with cancer. You can reach them through their support line 1800 733 548 (1800 REDKITE), which is open (9am-7pm AEST), email support@redkite.org.au or live chat on www.redkite.org.au
  • Canteen provides a service called Canteen Connect, an online community for young people aged 12-25 dealing with their own or a close family member’s cancer, and Parent Connect, an online community with resources, information and peer support on parenting through cancer. Online counselling is available seven days a week, including evenings. Visit https://canteenconnect.org or call 1800 835 932.
  • The Cancer Council in your state or territory can give you:
    • general information about cancer
    • information on resources and support groups in your area.
  • You can call the Cancer Council Helpline from anywhere in Australia on 13 11 20.
  • Any of the major children’s hospitals and networks in your state or territory can provide information about childhood cancer.

For more information about germ cell tumours, see the treatment PDQs® from the National Cancer Institute (United States):

Note that information from international organisations may not always apply to children in Australia.

 

Symptoms

Symptoms of germ cell tumours outside the brain may include:

  • a lump in the belly, lower back or testicle
  • pain in the belly
  • fever
  • constipation
  • in girls, not having periods or having unusual bleeding from the vagina.

Germ cell tumours in the brain may cause symptoms such as:

  • extreme thirst
  • urinating often
  • headaches
  • nausea or vomiting
  • changes in vision
  • loss of appetite
  • weight loss
  • tiredness
  • early or late puberty.

Symptoms of germ cell tumours depend on:

  • where the tumour is
  • how big it is
  • whether it produces hormones.

Many conditions can cause the symptoms above, not just cancer. If your child has any of these symptoms and you are worried, talk to your child’s doctor. The earlier cancer is found, the better.

 

Treatment

Your team of doctors, called a multidisciplinary team (MDT), will care for and treat your child, and will ensure that all your child’s needs are considered while they have cancer treatment. The section called The treatment team has further information about this.

Treatment for germ cell tumours depends on:

  • the age of your child
  • the stage of the cancer
  • other factors.

Doctors will suggest treatments based on your child’s situation. Treatment may involve one or more of the following:

  • surgery
  • chemotherapy
  • radiation therapy
  • stem cell transplant
  • careful observation.

Surgery

Your child may have surgery to remove all or part of the tissue containing the tumour. This can include removing:

  • one or both testicles
  • one ovary and one fallopian tube.

See How is cancer treated - surgery for more detail about cancer surgery.