“Had this been in place five years ago, I would be speaking to you as a stage 1 patient. I may have had the opportunity to be cleared of my cancer,” says Anne Fidler.
An energetic and focused consumer advocate for people with lung cancer, Anne will share her lung cancer experience at the VCCC Alliance Lung Cancer Screening Symposium on Friday 23 May. The symposium is designed to prepare Victoria’s healthcare workforce for Australia’s National Lung Cancer Screening Program, which rolls out across the country from 1 July.
For Anne, being a consumer representative is about the legacy she, and others within the lung cancer space, can leave.
“The Lung Cancer Screening Symposium is a great opportunity for anyone who has an interest in lung cancer to learn about the National Lung Cancer Screening Program,” Anne said. “And it’s a great opportunity for me to help them understand what it’s going to take to make this program tick and move forward.
“Everyone who will be in that room needs to participate with this question in mind: ‘How is my role in this going to make a difference?’”
Anne’s experience with lung cancer began five years ago, when she was diagnosed with stage 3a lung cancer. After being cancer-free for two and a half years, she discovered the cancer had returned and that she had stage 4 lung cancer, with a K-RAS G12C mutation.
The five-year survival rate for people with this mutation is 20 per cent, but Anne is a woman on a mission and told her oncologist she wants to be around for 10 years. “I don’t have time to die, I have too much to do,” Anne said.
Anne had no symptoms when she was diagnosed. She was 57, a past smoker and said she was super fit and healthy, going to the gym four to five times a week.
“I had to get a CT scan for an unrelated matter, and they ended up scanning a larger area than originally suggested. That scan showed a mark on my lung, which led to my diagnosis.”
Anne said until then, she “was just doing life like everyone else”. She had a couple of kids, lived in a nice area and had a good job in real estate.
“I want other people to look at me, and hear my story, and think ‘Hey, I’m the same as this woman’. I want them to know that if they’re at high risk of lung cancer, but they have no symptoms, that this screening program is for them.”
Because of Anne’s experience and her desire to help others who might be at risk of, or who have been diagnosed with lung cancer, she became a consumer advocate. She currently serves as the Chairperson of Lung Foundation Australia’s Consumer Advisory Committee and has contributed her insights to the National Lung Cancer Screening Program committee as a Lived Experience member.
“I was approached to look at the policies and procedures, and the participant information being developed. My first thought was, ‘How much have I got to offer here?’”
It turns out Anne has a quite a bit to offer. After one of the consumer meetings, she created her own template and content for an information brochure for potential participants, then headed to the closest stationery store to gather supplies and get to work creating materials to share with committee leaders.
“I knew what I would want to see as a consumer,” Anne said. “And I think I know how people want to access information.”
Anne says it’s the responsibility for everyone – government departments, GPs, nurses, radiologists and medical oncologists – to understand they have to control the narrative and have respectful conversations with potential participants.
“There is such stigma attached to smokers and lung cancer patients. We need the support of healthcare professionals, our family and friends - please don’t ostracise us or make us feel bad; we don’t deserve to die because of lifestyle choices. Just look past the judgement and get that person to the CT scan!”
“I thought I had dodged a bullet, but I didn’t,” Anne said. “After talking to my mum about my second diagnosis, and her asking, ‘Why you?’, I realised that it’s because I’m strong, and I am going to make a difference.
“If I change one view, if I get that one patient to have a CT scan and change the outcome of their life for the better, then I’ve done my job,” Anne said.
And that, for her, is her legacy in a nutshell.
The Lung Cancer Screening Symposium takes place Friday 23 May at The Florey Institute on Royal Parade Parkville. You can attend in person or online, click here for more information or to register
