When former teacher Nick Pitsonis was diagnosed with chronic lymphocytic leukaemia a year ago, he didn't even know the rare type of cancer existed.
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"A thousand people a year in Australia get diagnosed with it and no one's ever heard of it," he said.
"And that's just one of the 16 obscure cancers.
"Thousands of people a year and some of them are kids."
Since then, Mr Pitsonis and his wife Alice have taken part in a national project investigating rare types of cancer, which scientists hope will help to save a new generation of sufferers.
The Forgotten Cancers Project was started by the Cancer Council to build a database of information about people diagnosed with cancers which don't receive much attention or research.
Cancer Council Victoria research co-ordinator Fiona Bruinsma said anyone who had been diagnosed with a cancer outside the top five most common – breast, bowel, prostate, melanoma and lung cancers – should take part.
"There's still very little known about the causes of some of them and there's been very little improvement in the survival rates for those less common cancers and less research done on them," she said.
"We were really interested in trying to address that, trying to find out more about the causes of those less common cancers and how we could better treat them and improve survival."
Mr Pitsonis said it was a second kick in the guts on top of his diagnosis to realise the lack of research into the type of cancer he had been diagnosed with.
"You don't begrudge the funding for the other cancers but you feel like you're being left behind a bit," he said.
"The research dollars only stretch so far ... [but] there's hope if there are some research monies and some research done.
"Who knows, it could save my life or many other peoples' lives down the track."
Dr Bruinsma said anyone who had been diagnosed with a rare cancer should register for the study.
Afterwards, participants would be sent out a survey and a swab to collect a sample of their saliva for genetic analysis.
"It's called forgotten cancers not because people are forgotten about but just that it's been forgotten in terms of the research that's being done," she said.
Dr Bruinsma said the study would take a long time and no results were expected for at least a couple of years.
If you want to get involved with the program, visit www.forgottencancers.com.au.
