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New research provides hope to those with Forgotten Cancers

Friday 26 August, 2011

Around 30,000 Australians will be able to take part in the first epidemiological-based research project in the world focusing on less common cancers, thanks to the launch of The Forgotten Cancers Project at Cancer Council Victoria today.

New Cancer Council Victoria statistics show over half of all cancer deaths are due to less common cancers. This is despite the five most commonly occurring types - breast, bowel, prostate, melanoma and lung - accounting for 61% of cancer diagnoses in Victoria*.

The aim of The Forgotten Cancers Project is to understand the causes of less common and /or underresearched cancers, and establish ways to prevent them and detect them earlier, leading to reduced mortality rates.

The new research initiative was launched to coincide with the 25th anniversary of Daffodil Day, a day when many Australians show their support for the thousands diagnosed with cancer every year.

Cancer Council Victoria CEO, Mr Todd Harper, said The Forgotten Cancers Project is exciting because the same research approach successfully pioneered for the five most common cancers would be applied.

"Over the past 20 years, Cancer Council Victoria's Cancer Epidemiology Centre has been instrumental in driving groundbreaking studies which have considerably improved our knowledge of common cancers."

"However, the resources available for research into less common cancers have been more scarce. This is largely because a smaller portion of the population are diagnosed with any one of these cancers every year, making it difficult to conduct the large-scale studies needed to make powerful analyses."

"We hope this project will result in a major scientific resource that can be used for future long-term projects by scientists worldwide to test new ideas, methodologies and hypotheses."

"By discovering which lifestyle factors and which genetic factors increase the risk of cancer, we also hope in the long-term to be able to use the information to develop prevention campaigns to reduce people's risk."

Australians over 18 years of age, who have been diagnosed with one or more of the 15 targeted cancers: non-Hodgkin lymphoma, leukaemia, multiple myeloma, kidney, bladder, stomach, brain, liver, oesophagus, pancreas, uterus, thyroid, gallbladder, small intestine and bone cancer, are invited to participate in the study. If eligible, a nominated family member not affected by the same cancer may also be invited to take part.

Cancer Epidemiology Centre Deputy Director, Assoc Prof Gianluca Severi, said the 15 target cancers had been selected for specific reasons.

"We might know some causes of some of the cancers but not a lot. We know some have very poor survival and we really need to find out more about them so we can try to prevent them. And we've selected cancers for which we hope there may be genetic causes that we will be able to identify through analysing people's DNA."

Participants will be asked to complete an online questionnaire about topics such as lifestyle factors, family history of cancer, medical history and occupational history. They will also be asked to give DNA from either saliva or blood samples.

"We need 1,000 people with each type of cancer, and a matching number of relatives, in order to build sufficient information for our research platform."

Dr Severi said he hoped people would understand the importance for a project of this scale and encouraged Australians to support the initiative.

"Due to the very low incidence of some cancers, such as small intestine for example, we're really going to need as many people as possible with a diagnosis to come forward."

"What's really exciting is that once we've filled our quota for one of the cancers, we can then open the doors and select another cancer to start building up the resource."

With an ageing population, and the fact that cancer occurs more commonly in older people, the number of cancer patients is expected to increase by up to 30% over the next 10 years.

Dr Severi said it is imperative we invest in collecting data and building a research platform for the forgotten cancers now if we are to address this burden over the coming years.

Anyone diagnosed with one or more of the 15 cancers who may be interested in participating in The Forgotten Cancers Project can visit

Highlights from latest Cancer Council statistics


Rare overall but accounts for 3% of cancers in young Victorians (under 30 years) for whom these cancers rank in the top 10.


Second most common cancer in children under 15 (16% of all cancers in this age group); also relatively common in 15-29 (6th most common, 5% of all cancers). Brain & central nervous system cancers have the 4th highest premature loss of life (because of the poor prognosis and frequency in young persons). In 2009, YPLL (years of potential life lost) were 3,692 (=6% of total).


Relatively common in children (4th leading cancer, 5% of total cancers in under 15s).


The most common childhood cancer (35% of all cancer in under 15s and 7% in 15-29 year-olds). Overall incidence has increased at 1% per year in all Victorians, though mortality has decreased as a result of advances in treatment.


Accounts for 3% of tumours in under 15s and has one of the poorest survivals of all cancer (13 and 14% for men, women). Higher in Asian migrants (due to prevalence of Hepatitis). Incidence increasing by nearly 5% per annum - probably due to migration patterns.

Non-Hodgkin lymphoma

Second most common cancer in adolescents and young adults (15-29) - 17% of all cancer.


Poorest survival for any cancer in men and women (6% and 4% respectively). Ranks 5th in terms of mortality, though10th for incidence.


Highest survival in women, 2nd in men (after testicular cancer) 90%, 95% respectively. Much more common in women (307 to 109 men in 2009).

*PDF iconCanstat 50: Cancer in Victoria 2009 (608kb)