Introduction
Rhabdoid tumours are rare and aggressive cancers that are found in:
- soft tissues like the muscles
- organs like the kidneys and brain
- the central nervous system – the system that controls how we think, feel and move.
Around half of rhabdoid tumours are found in a part of the brain called the cerebellum. The cerebellum is the lower part of the brain just above the brain stem that connects to the spinal cord. It controls movement.
Rhabdoid tumours are found in:
- babies aged 11-18 months
- children aged 2-13 years.
Rhabdoid tumours are very rare but spread quickly and are very difficult to treat.
Signs and symptoms
Signs and symptoms of a rhabdoid tumour will develop quickly and worsen over days or weeks. Symptoms will also depend on where the tumour is growing.
See your local doctor as soon as possible if your child shows signs like:
- headaches first thing in the morning
- headaches that go away after vomiting
- nausea and vomiting
- being unusually sleepy or low energy
- loss of balance, lack of coordination, or trouble walking
- for babies, an increase in head size.
Diagnosis
Your child’s local doctor will try to rule out any other illnesses first. They will:
- take a blood test
- take a urine test
- take a medical and family history
- do a physical check.
Your child will be referred to a cancer specialist, called an oncologist.
The oncologist will be able to check symptoms and diagnose a rhabdoid tumour using:
- biopsy - taking a tissue sample and testing it in a lab
- ultrasound, X-ray, CT and MRI scans to see inside the body.
CT and MRI scans can help doctors get a detailed image of the tumour, but diagnosis is made using biopsy results. This is because rhabdoid tumours in the brain can look very similar to other types of brain tumours.
If cancer cells are found during the biopsy, the surgeon may continue to try to remove the tumour as safely as possible.
Treatment
Rhabdoid tumours are aggressive and spread quickly, so they must be treated immediately.
Treatment involves:
- surgery - to remove as much of the tumour as possible.
Rhabdoid tumours can be very large, so they may need multiple surgeries to remove them completely.
- radiotherapy – to kill or stop cancer cells from growing.
- chemotherapy and high-dose chemotherapy – to kill or stop cancer cells from growing.
Some children will need stronger or high-dose chemotherapy to treat their rhabdoid tumour. High-dose chemotherapy can also destroy the cells inside the bone marrow that help form blood and fight illness.
- stem cell transplant – to replace healthy cells destroyed by high-dose chemotherapy.
Stem cell transplant
A stem cell transplant is also known as a bone marrow transplant.
Stem cells are very early cells made by the bone marrow; the spongy material found inside bones.
Stem cells develop into:
- red blood cells - cells that carry oxygen around the body
- white blood cells – cells that protect the body from illness and infection
- platelets - cells that help to stop or prevent bleeding from happening.
High-dose chemotherapy can damage bone marrow, which means the body cannot produce these cells.
Before chemotherapy starts, some children will have healthy cells from their bone marrow taken out and stored.
After treatment, the healthy cells are put back into the bone marrow to grow and replace the destroyed cells.
Management
Cure rate
Rhabdoid tumours are aggressive, spread quickly and are difficult to treat. The average survival time for children with a rhabdoid tumour is between six and 11 months.
Children who have better outcomes for surviving rhabdoid tumours:
- are generally over the age of three
- have had the entire tumour removed with surgery
- have had treatment with high-dose chemotherapy and a stem cell transplant.
There is a low chance of the cancer returning if the rhabdoid tumour:
- is successfully removed and treated
- does not return within one year after treatment.
Children under three years old have a higher chance of rhabdoid tumours returning after treatment.
Support for families
A cancer diagnosis can leave families and children feeling overwhelmed, scared, anxious, and upset. Practical and emotional support during and after treatment is essential and can come from:
- family
- friends
- healthcare professionals
- specialised support services.
Speak to your child’s treatment team for information about support services.
Resources and more information
- Cancer Institute NSW - provides general information, support and research about cancer (opens in a new tab)
- Cancer Australia - provides general information, support and research about cancer (opens in a new tab)
- Cancer Council Helpline - free and confidential, 13 11 20 (opens in a new tab)
- Children’s Cancer Institute Australia - medical research institute dedicated to curing childhood cancer (opens in a new tab)
- CanTeen - national support organisation for 12 - 24-year-olds who are living with cancer (opens in a new tab)
- RedKite - financial and emotional help, and support groups. (opens in a new tab)