WHEN Carolyn Riordan was diagnosed with lung cancer, she left the respiratory physician's office with a card for an appointment with an oncologist the following week.
That was it.
"I had a week with no information," the 57-year-old Sydney woman told AAP.
"I didn't have access to a lung cancer nurse, there was nothing on that card to suggest where I could find out any information, so in that situation you just Google."
Her husband and four daughters were also scanning the internet for information after her diagnosis last year, learning the survival rate for the disease was just 17 per cent.
"If we'd had a lung cancer nurse or a number for a lung cancer nurse, it would've saved me so much time and heartache," Ms Riordan said.
"It would've given me some resources that were evidence-based and reliable and it would have made such a difference to me, trying to navigate such a shocking diagnosis."
Five months later, she learnt Lung Foundation Australia had a lung cancer nurse, who helped guide patients through their treatment.
"That was probably one of the best phone calls I ever had," she said.
"She was a wealth of information and she knew so much about lung cancer and she helped me greatly."
Ms Riordan never smoked, but learnt living with lung cancer often meant people assumed she had, adding to the stigma around the disease.
"It's more like people don't actually say it to your face, they sort of say it to your friends, and they'll say, 'oh I didn't know Carolyn was a smoker'," she said.
"But it shouldn't matter ... no one deserves lung cancer."
Just one-fifth of people with lung cancer are life-long smokers.
Ms Riordan is among a dozen lung cancer patients descending on Parliament House in Canberra on Thursday.
The 12 are sharing their stories to encourage policymakers to ramp up support for those grappling with the disease.
Ms Riordan hopes politicians who could make a difference understand they could easily be in her shoes.
"They probably don't think they can get lung cancer. But if you have lungs, you can get lung cancer."
Lung Foundation Australia, which is spearheading the campaign, is hoping the 47th parliament will be the first to properly recognise gaps in treatment, care and empathy for people with the disease.
While lung cancer is the fifth most common type of cancer overall, it is the leading cause of cancer deaths in Australians, with one-in-five people diagnosed with the condition never receiving treatment.
Less than half of those who are diagnosed also treated by "multi-disciplinary teams", bringing together a range of health professionals and boosting people's chance of survival.
"A strong, continued, and concerted effort is necessary if we are to truly make inroads in lung cancer, a disease which has historically been massively under-funded," Lung Foundation chief executive Mark Brooke said.
The organisation says an extra 25 lung cancer specialist nurses are needed immediately across the nation.
Australian Associated Press
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