Warren's story: living with a dust disease

Warren developed a dust disease while working in an engineering firm. Despite only having one lung, he has remained independent, manages the family business and plays golf several times a week.

Warren standing with his wife, son and daughter

Work in dusty industries

Warren started work as an apprentice fitter machinist in 1979 in Muswellbrook New South Wales, where he was exposed to asbestos in power stations and at his workplace. At the time, he recalls, there wasn't any education about the hazards of working with asbestos. He finished his apprenticeship and spent the rest of his career working in coal mines. He also spent time working on the family's dairy farm.

One day in June 2018, Warren wasn't feeling well after working a 14-hour shift at the coal mine and the family farm the day before. He went to his local emergency department. The doctor listened to his chest and requested an x-ray. The doctor told Warren that his left lung had completely collapsed and there was fluid built up around the lung, which needed to be drained.

He was transported to Newcastle Private Hospital, where he underwent surgery in the coming days. The medical procedure, pleurodesis, is performed to stop fluid from collecting in the pleural space, which lies between the lung and chest wall. Warren's lung was re-expanded, and he recovered well after the surgery.

This is how Warren found out he had malignant pleural mesothelioma, a cancer affecting the cells which cover the lung and can affect the lining of other internal organs. The prognosis is not good.

"That was the start of it for me. I had no idea."

Later that year, Warren was admitted to hospital. Due to his illness, he had to stand down from his work. Many of his colleagues and managers got in touch, asking if they could help. During his work at the coal mines, Warren was having regular lung screenings, which came back clear. As he transitioned to contracting for the coal mines and working for himself, he didn't have lung check-ups as regularly.

Understanding his treatment options

Warren connected with Associate Professor Brian McCaughan, a cardiothoracic surgeon in Sydney, who guided him through his options. Associate Professor McCaughan specialises in thoracic cancer treatments and is considered a pioneering doctor in this space.

They discussed the option of extrapleural pneumonectomy (EPP) surgery to remove the diseased lung. At the time, Warren's daughter was overseas on exchange, so he wanted to wait until she returned before he went into surgery again.


EPP is a complex surgery that requires a lot of preparation and testing to ensure it is the right treatment for the person. In the meantime, Warren was undergoing chemotherapy and making financial arrangements with the help of his legal team.

In 2019, when Warren's daughter returned home, he had the EPP surgery.

"I was told in 2018 that with chemotherapy, I would have 18 months. It's been almost five years and I'm still here."

Accessing peer support

Prior to his surgery, Warren was introduced to the team at the Asbestos Disease Research Institute (ADRI). ADRI runs support groups for people with mesothelioma and their families. Warren and his wife, Christine, attended the support groups where they were introduced to others who had undergone the EPP surgery.

Learn more about support groups

"The support group was great. I was able to talk to people about what it's like to function with one lung. I spoke to people about their quality of life and they made me feel comfortable about surgery. This was a big part of us deciding to go ahead with surgery. I don't know how people do this by themselves. It would be difficult."
Warren, a Dust Disease Care client

These meetings continue to be important for Warren. Here he has spoken to people who are considering the EPP surgery and has been a support to people who've had the surgery by sharing their experiences. He emphasises that although everybody is different, they share similar experiences.

Post-surgery, Warren completed 30 sessions of radiation treatment, five days a week at the Chris O'Brien Life House in Sydney. Baseline scans were taken and now Warren has a follow-up scan every three months to monitor for any changes. He has been doing well until recently, where he has required some surgery and follow-up radiation treatment for the mesothelioma.

"There aren't many of us that have had EPP surgery. We meet every four to six months in person to talk about things that are happening medically, support new patients to understand the path ahead and being there in a supportive role."

Warren feels lucky that he has a strong support network around him which includes his wife, children, family and friends.

"It's hard for my family too. I think it's harder for the people that aren't sick as they need to watch me go through this. The support groups are great for my wife, Christine, so she also has that support network."

Warren and his wife continue to attend the ADRI support group, both online and in person, in Sydney. He is in regular contact with the team, where they check in to see how he is doing.

"Jocelyn, Pam and the team at ADRI have been amazing for us. They are the people I call who understand our situation. They know people who've had the EPP surgery, what they face and what's difficult. They are a one-stop shop for advice and support, which is a real help when you can't always call your surgeon or specialist."

"We can't always get to Sydney, so online meetings are great for us."

Along the way, Warren has had a few recurrences of mesothelioma. In March 2021, scans picked up two small lesions in his bowel and below his kidney. He was monitored for 12 weeks, had another PET scan and then surgery to remove the tumours.

Warren comes to Sydney every six weeks or so to attend medical appointments at the Chris O'Brien Life House. Here he has a PET scan and brain scan every three months.

"They are an amazing group of people and I trust them." 

Support from icare

Warren is supported by the icare Dust Diseases Care scheme, where he receives compensation payments and payment of medical bills associated with his dust disease. icare provides financial support to workers who have a disability because of a dust disease contracted in a NSW workplace.

"From day one, I developed a good relationship with my icare case worker. I would ring my caseworker to let him know how I was doing, and he would ring me as well. We developed a supportive connection and met for coffee when I was in Sydney. You need to be empathetic and understanding in that role, especially when people aren't doing well. My caseworker is excellent to deal with."

"icare have been great. I haven't always had a yes to every request, but I understand there are limits to what they can approve. I have never had a problem with any claims."
Warren, a Dust Disease Care client

Advice to others

"Through all this, Jocelyn, Pam and the team at ADRI have been an amazing support for us. They are so important to my wife and family. They've been the common denominator of support throughout my experience. They're all very special."

"My advice for people going through is to get good information and support. Be cautious of the internet, it's not necessarily a good place to get information about mesothelioma. Speak to experts in Australia who have had experience with this insidious disease."

Learn more about support groups 

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