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What is a rare cancer?

In Australia, a Rare cancer is defined as one which has fewer than 6 diagnoses per 100,000 of the population and a Less Common cancer is one which has fewer than 12 diagnoses per 100,000 of the population.



Common Cancers

The successes we’ve seen over the past 20 years for common cancer patients are significant. While incidence rates have increased, as a result of increased surveillance and screening, mortality rates have decreased due to improvements in early diagnosis and treatment. As a result, patients today diagnosed with common cancer have a much higher chance of survival than they did in the early 1990s.

Graph 1: Incidence and mortality rates for common cancers compared to population change since 1992


Rare and Less Common Cancers

As distinct from common cancers the percentage increase in incidence and mortality for RLC cancers occur at roughly the same rate, i.e. twice the rate of population increase. While we have seen increases in incidence for common cancers, we have also seen dramatic reductions in mortality due to early diagnosis and improved treatments, but this has not been the case for RLC cancers where diagnosis remains slow, and treatment availability limited. The same effect is even more devastating in rare cancer diagnoses.

Graph 2: Incidence and mortality rates for rare and less common cancers compared to population change since 1992


Rare Cancers

Australian patients diagnosed with a rare cancer face the greatest challenge of all. In the past 20 years we have made significant advances in reducing the mortality rates for common cancers compared to incidence; and we have even seen incidence and mortality rates increase at roughly the same rate for RLC cancers. But for rare cancer patients the increase in mortality rates far outstrip the rising incidence rates. 

We need to recognise that a rare cancer diagnosis is often accompanied by a very poor prognosis and as our population ages we will continue to see the worsening impact of these very neglected and under treated cancers.

Graph 3: Incidence and mortality rates for rare and less common cancers compared to population change since 1992


Among all cancer deaths in this young age group of 20-39 year olds, RLC cancers account for 61% of all cancer deaths. Indeed RLC cancers kill 1 young Australian every day.

Graph 4: Total cancer deaths of Australians aged 20-39, in 2012


RLC cancers are once again the most common cause of cancer death in the 40-59 year old age group, accounting for 52% of all cancer deaths. Other age-related cancers have increasing impact in this age group; with prostate cancer causing 1% of deaths and deaths by other cancers such as lung and melanoma both on the rise.

Graph 5: Total cancer deaths of Australians aged 40-59, in 2012


RLC cancers remain the most common cause of cancer death in the 60-69 year old age group, accounting for 51% of deaths.

As the Australian population continues to age, the actual numbers of RLC cancer patients in this age group is set to continue to increase.

While common cancer patients may be offered some hope by our improving ability to diagnose and treat their cancers, RLC cancer patients remain destined for the same outcomes as the early 1990s. Examples of our impact on specific cancer examples are discussed in the following chapters.

Graph 6: Total cancer deaths of Australians aged 60-69 in 2012


Diagnosis by Generation

In Australia each year 52,000 people are diagnosed with a rare or less common cancer; 25,000 wont survive.

Gen Z & Alpha

One child diagnosed every 4 days.


Gen Y

One Gen Y diagnosed every day.


Gen X

Ten Gen X's diagnosed every day.

Boomers

RLC cancers claim more lives than any other cause of death.





Funding Cancer Research

In 2015 an Audit of Cancer Research showed a slight increase in research funding for less common cancers, it demonstrated a continuing strong focus on common cancers within the Australian Research Community. Indeed it even recommended that ‘Research funding investment in Australia could be prioritised for cancers which have a high impact (incidence and mortality) and burden of disease – disability-adjusted life years (DALYs)’.44

Graph 7: Percentage cancer research expenditure (per annum) versus percentage burden of disease and deaths

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