Anna Bay resident Carolyn Armstrong had pain in the chest and difficulty swallowing. She thought it was anxiety.
She put off seeing a GP, partly due to the pandemic and initially attributed her symptoms to work stress.
"Then I got really short of breath and thought, this is actually not quite right. I got a diagnosis and it was pretty dire," she said.
"It had already spread to my neck and lymph nodes in the middle of my chest. It was inoperable. It came out of the blue really."
She was diagnosed with stage IV lung cancer in November last year.
She's sharing her story to support a Lung Foundation Australia report, to be released at Parliament House in Canberra on Wednesday, calling for the federal government to fund a national lung cancer screening program.
If a screening program had existed, Ms Armstrong believes she would have used it.
"How much time I have is very unknown for me, but it's not a long time. I'm hoping to see change. How can the biggest cancer killer in the country not have a screening program?"
Ms Armstrong had a stressful job working for the Department of Education, supporting schools to help children with special needs and disabilities.
"I had little symptoms that I didn't know could be lung cancer," she said.
"I was working from home because it was lockdown and we were isolated. I just thought it was stress and anxiety from a high-pressure job. I just kept going."
To be treated for lung cancer in the public health system, she faced a minimum wait of 9 to 10 weeks for treatment. But she didn't have time to wait, so she went through the private system.
She had breast cancer when she was 30, but that was a different experience in accessing treatment.
"I had the diagnosis on the Wednesday and the mastectomy on the Friday and treatment started 10 days later."
She has found that lung cancer comes attached with guilt, shame and blame, given the link to smoking.
The report found that lung cancer patients have a 30 per cent higher than average prevalence of poor mental health, compared to other cancers.
The stigma experienced by people living with lung cancer "exacerbates psychological distress, placing them at a high risk of suicide".
Ms Armstrong said it's "a very isolating disease".
"Some people say, 'did you smoke?' But some people might eat too many hamburgers and have a heart attack. Others might not look first before they cross the road and get hit by a car. I haven't smoked since I was 20. You could smoke in aeroplanes and offices then and it was acceptable."
The link between smoking and lung cancer carried the notion that "it's your fault and you deserved it".
Other risk factors for lung cancer are: air pollution, asbestos exposure, radon, family history, personal history of lung disease and genetics.
Ms Armstrong has been through chemotherapy and radiation. With surgery not an option, she's currently receiving immunotherapy to prolong quality of life.
She doesn't know how long she has left, but she takes solace from Buddhist concepts of death.
"Thich Nhat Hanh, the Buddhist leader with a global following who recently died, has a talk titled 'A cloud never dies'," she said.
It's an insight into the interconnected nature of life, with nothing created, nothing destroyed and everything in transformation.
"I used to work in oncology and some babies don't survive. I'm 53, I'm lucky. That's not a cliche. I don't want to die. I have three children and a beautiful husband. I'm special but no more special than anyone else. I try to focus on what we've had, rather than what I'll miss out on. That's just a rabbit hole.
"I've had a big life. Of course the regret is being so busy and not being present enough. I don't have a bucket list. My only goal is to be present with family and friends."
When she hugs her family members, she extends those moments because she knows time isn't endless.
"I treasure that couple more seconds of touch."
The foundation's report said a lung cancer screening program would save 12,000 lives in its first decade.
The foundation is also urging the government to fund 100 specialist lung cancer nurses by 2025.
"Our nation is currently asking each specialist lung cancer nurse to care for a staggering 616 patients each," the report said.
"This is a stark comparison to other cancers, with one nurse for every 185 patients with breast cancer and more than double the number of prostate nurses than lung."
Only 1 in 5 lung cancer patients are still alive five years after diagnosis.
Despite this, lung cancer has the lowest levels of federal funding for specialist nurses of the top five cancers.
Last year's federal budget committed $6.9 million to scope the screening program. The foundation urged the former Morrison government to scale up this investment for further piloting and development, but no further funding eventuated in the March budget.
The foundation hopes the Albanese government backs its plan for establishing the program by 2027.
Mark Brooke, CEO of Lung Foundation Australia, said "we have faith that this new government will not leave those with lung cancer behind".
Associate Professor Nicole Rankin, of University of Melbourne, said a targeted lung cancer screening program in Australia would "tackle the persistently poor outcomes that we've seen over many decades". She added that it would also enable "unprecedented changes in how lung cancer is managed".
