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 What are Rare Childhood Cancers?

Compared with adult cancers, childhood cancers are rare, and several very rare types account for around 20-25% of all childhood cancers. Most behave like other children’s cancers, growing and spreading to other parts of the body.


Rare children’s cancers are broadly categorised as follows:

Children’s liver tumours:

·    Hepatoblastoma (usually occurs in children under five)

·    Hepatocellular carcinoma or HCC (which is rarer and usually occurs in older children).

·    Liver cancer can be either primary (starting in the liver) or secondary (metastatic and spread from another part of the body)

Other rare childhood cancers:

Tumours that normally only occur in adults are occasionally found in children and include cancers of the digestive system, the thyroid, and the adrenal gland.


Rare tumours which only occur in children include:

·    Pancreatoblastoma

·    Malignant rhabdoid tumours

·    Melanotic neuroectodermal tumours of infancy

·    Rare tumours in the head and neck area (Nasopharyngeal Cancer)

·    Rare hormonal/endocrine tumours (Phaeochromocytoma)

·    Rare brain tumours (Meningioma)

·    Rare skin tumours (including Melanomas).

Rare cancer occurrence:


Rare cancers are where the occurrence is less than 5% in diagnosis. They also have less chance of survivorship.

Families out of pocket costs:

In addition to the expected high social and emotional impacts, the majority of families reported suffering from great or moderate economic hardship. Factors predictive for families at risk included single parenthood, lower household income, and greater distance from the hospital. The results show that the distribution of resources is not equitable and is currently failing to negate significant financial stresses for many Australian families. (Source: Childhood cancer: its impact and financial costs for Australian families John A Heath 1R Mario LintuuranGemma RiggutoNicole TokatlianMaria McCarthy

A second study showed eighty percent of the sample reported a minimum of five different out-of-pocket expenses (total mean value = 19,064 Australian dollars; approximately 9,723 US dollars). The majority reflected travel, accommodation, and communication costs, use of work-related entitlements, and changes in paid employment. In lifestyle terms, the area of greatest impact was found for the social domain, such as cancelling vacations and giving up recreational pleasures and social expenditure. (Source: Hidden financial costs in treatment for childhood cancer: an Australian study of lifestyle implications for families absorbing out-of-pocket expenses Richard J Cohn 1Belinda GoodenoughTali ForemanJenny Suneson).

Rate of Ongoing support:

Two-thirds of childhood cancer patients will have long lasting chronic conditions from the cancer treatments that require ongoing treatment.


Getting the news that your child has cancer is unimaginable for those who haven't gone through it. The extraordinary emotional toll can't be calculated. Unfortunately the financial toll can, and it's immense. At a time when the family's focus needs to be on caring for their child and dealing with their own emotional stress, they are faced with crippling bills and are forced to asked the question, ‘Can we afford to take care of my child?” 

For more information on rare childhood cancers, check out these webpages:

Australian Cancer Research Foundation

Cancer Council

Zero Childhood Cancer

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read our assistance guidelines.

To request our assistance, complete the form on our contact page:

Assistance Request Form

Or you can complete this form and email it to us at or print it out and post it to 37 Mellington Loop, Googong, NSW 2620.

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