‘Forgotten’ cancers in focus on Rare Disease Day

Monday 29 February, 2016

This Rare Disease Day (Monday 29 February) Cancer Council Victoria is shining a light on less common cancers, which account for more than half of all cancer deaths in the state.

This is despite the five most common cancers - breast, prostate, bowel, lung and melanoma - accounting for 60 percent of all cancer diagnoses.

Survivors of rare and less common cancers, like those of the brain, pancreas and bladder, are urged to take part in the Forgotten Cancers Project, a world-first study to improve the detection and treatment of less common cancers.

For Janet Micallef, a visit to the optometrist three decades ago led to the chance discovery of brain cancer, and was the catalyst for eight separate surgeries - the most recent in 2014.

"When you're diagnosed with a less-common cancer you often feel like you don't belong. Studies like this are a great reminder that there are others going through the same experience as you, and that together we can all help future patients.

"Earlier diagnosis would be incredible. It's often hard to tell with brain cancer what exactly is going wrong until significant damage is done."

Brain cancer takes about 1200 lives nationally every year and is the leading cancer killer for young people under the age of 39 and children under 15 years of age. There is no regular screening test available, and its exact causes are not known.

Cancer Council Victoria Support Services Director Nicola Quin said that Victorians over 18 who had been diagnosed with a cancer that was not one of the five most common were eligible to take part in the Forgotten Cancers Project.

"Today two-in-three Victorians will survive cancer five years after diagnosis. If we are to lift overall cancer survival rates, we need to better understand the causes of ‘forgotten' cancers, and find new ways to detect and prevent them."

Cancer Council Victoria researcher Dr Fiona Bruinsma said in recent decades cancer research had focused primarily on the five most common cancers, which has resulted in significant progress in the detection, treatment of and survival from prostate, bowel, breast, lung and melanoma.

"There are more than 200 types of cancer and many of these are under researched."

Participants are asked to complete four online questionnaires that will collect details on diet, occupation, lifestyle, family history and early life exposures. They will also be asked to provide a saliva sample for DNA analysis using a kit that will be mailed out.

Those eligible can register for the study online at www.forgottencancers.com.au or by calling 1800 068 289.