Beyond builders and miners: mesothelioma hits home

Desley and Les Carbon are preparing for a much-anticipated road trip from their home in Perth up the Western Australian coast to Exmouth. “I’ve just purchased a couple of large fishing rods”, says Mr Carbon. “My wife loves fishing but she’s allergic to fish — so if she catches any I’ll eat them!”

The couple in their 60s are looking forward to a few weeks of relaxation after what’s been a difficult 18 months. Early last year, Mrs Carbon began experiencing recurrent flu-like symptoms, with a hacking cough and difficulty breathing. Multiple courses of antibiotics did little to relieve the symptoms.

Her asthma worsened, and she was diagnosed with pneumonia. She had a litre of fluid drained from her lungs, but continued to experience chest pain. “I saw a specialist and said ‘why do I still have pain, when all the fluid’s gone?’” She had various chest x-rays and a CT scan, but nothing showed up.

In April, after a PET scan followed by a biopsy, Mrs Carbon was diagnosed with pleural mesothelioma. “The first question I asked was, ‘How long have I got?’ The doctor said 12 months. But I hope I will get a bit longer than that.”

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Mesothelioma is a rare and fatal cancer of the pleura or peritoneum, almost always caused by exposure to asbestos. As Nola Olsen and colleagues write in this issue of the Journal, asbestos was mined and used widely as a building material for decades in Australia. Until the 1960s, 25% of all new homes used asbestos cement cladding. The legacy of this era is that Australia now has the highest mesothelioma rate in the world.1

Historically, mesothelioma was mainly an occupational cancer, but Mrs Carbon is one of a growing number of people with the disease who were exposed to asbestos at home, particularly during renovations or home maintenance.

Olsen and coauthors find that although the number of cases associated with occupational asbestos exposure has plateaued, those related to domestic exposure continue to rise. “Malignant mesothelioma cases associated with home maintenance and renovation have increased markedly over the past 10 years and remain on an upward trend”, they write.

This group of mesothelioma cases has been called the “third wave”, and it is not known when this wave will peak. The first wave affected workers involved in mining, milling and manufacturing asbestos products, while the second wave comprised workers who used asbestos products in industry, such as builders and plumbers.

Margaret Kent, practice group leader in asbestos litigation at Slater & Gordon lawyers, has been obtaining compensation for people with asbestos diseases for the past 15 years. Like Olsen and colleagues, she has noted a “gradual and very discernible” trend in the nature of asbestos exposure among people seeking compensation for mesothelioma.

“The decrease in occupationally exposed people and the increase in non-occupationally exposed people have been very obvious. Once upon a time most people who called us would be occupationally exposed but that’s not the case any more.”

Clients have included people who developed mesothelioma after washing the clothes of their husband or father who worked in the asbestos industry, people living near a business that used asbestos, or painters who’ve sanded back asbestos-laced walls.

Although most of Slater & Gordon’s clients are over 60 years of age, some are in their 30s and 40s. The youngest that Ms Kent has worked with was only 22 years old and may have been exposed as a toddler.

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As an indication of how ubiquitous asbestos is in Australia, Mrs Carbon has identified six occasions when she may have inhaled asbestos fibres, starting from when she was a young girl watching her uncle build extra bedrooms on to their farmhouse. “I used to help my uncle hold the big asbestos sheets while he was cutting them. We would play with the bits that fell off.”

At age 25, and newly married, she lived in a house in Albany, WA. When Cyclone Alby tore the asbestos-laden roof off the house in April 1978, she and her husband lifted the pieces of broken roof to be cleared away. The newlyweds renovated their house, including sanding down the eaves, which also contained asbestos. “We used a steel wire brush, and sometimes we used sandpaper. There was lots of dust going everywhere.”

Mrs Carbon knew other people with mesothelioma at the time of her diagnosis, but she was shocked to be diagnosed herself. “I had thought it could be cancer, but I never for one minute thought that it was mesothelioma.”

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Ms Kent from Slater & Gordon says there is still a public perception that mesothelioma is an occupational disease. She says most people exposed to asbestos during home renovation had no idea of the dangers and receive a “particularly bad and huge shock when they discover they have an asbestos-related illness”.

She is concerned that there is a lot of misinformation in the community about the nature of asbestos and the potential risks of home renovation. “It worries me. We’re a great renovating country and the estimate is that one in three houses has some asbestos in it. Increasingly, people don’t know what it looks like, and they don’t understand that it’s very hazardous, potentially even in small quantities.”

She adds that do-it-yourself TV shows have a role to play in increasing awareness of the risks of home renovation. “If they show pictures of people hacking with sledgehammers into asbestos sheeting, then it’s incredibly irresponsible, but if an explanation of the hazards is given, and some attempt to demonstrate doing it properly — then that could be a good thing.”

Ms Kent’s concerns are shared by Unions NSW, which passed a unanimous resolution last month, calling on home renovation TV shows to include on-air warnings about the dangers of asbestos. Network Ten’s TV program The Renovators did not respond to the Journal’s request for a comment.

Mrs Carbon agrees that there needs to be greater awareness of the risks of home renovation. “You have to be very careful; it only takes one fibre. You really have to wear masks, but we didn’t. We didn’t know anything about it.”

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Mrs Gladys (Joyce) Hyde, aged 78, was similarly surprised when she was diagnosed with mesothelioma 18 months ago, particularly given that she had never worked with asbestos or handled it during home renovation. Her asbestos exposure was indirect and probably occurred when she was living with her family in south-west Melbourne. They were next door to an agricultural company that conducted substantial building work in the late 1970s and early 80s. No one warned the family of possible risks and she had no idea her health was potentially in danger. “We didn’t think about it at all.”

She was admitted to hospital 18 months ago because she was having difficulty breathing. “I could barely get to the bathroom to have a shower, it was that bad.” She ended up having five litres of fluid drained. “When they found the mesothelioma, it was a shock.”

Professor Bill Musk, a Perth-based respiratory physician, says patients with mesothelioma typically present to their GP with chest pain or breathlessness. “The GP then does a chest x-ray and finds something on it, particularly pleural effusion.” A cell sample to confirm the diagnosis is usually obtained by aspirating the pleural effusion, but false negative results are common. A closed biopsy, a video-assisted thoracoscopic biopsy, or occasionally an open biopsy, can also confirm the diagnosis of mesothelioma.

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Mesothelioma is an unpredictable disease. Once diagnosed, the median survival is 9 to 12 months, but it is difficult to give an accurate prognosis. “Occasionally, a patient survives 10 to 15 years”, says Professor Musk. And although the cancer is almost always linked to asbestos exposure, it’s impossible to predict who, of those exposed, will develop the cancer.

Mr Carbon has luckily not developed the disease, despite having sanded back the same eaves with his wife in Albany in the late 1970s. He also had a career as a ship’s master, which involved putting asbestos lagging on exhaust pipes, and later breaking it off when it became hard and brittle. “It was the most dangerous thing we could do to it, but I’ve never experienced any problems”, he said.

Mrs Hyde is also acutely aware of the unpredictability of mesothelioma. “My oncologist said that a man could work with asbestos all of his life and never get it, but his wife could wash his clothes and get it. His view was it’s just the luck of the draw.”

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At the urging of her grandson, Mrs Hyde approached the law firm Slater & Gordon to seek compensation.

Slater & Gordon’s defendants have included everyone from asbestos manufacturers, James Hardie and Wunderlich (a subsidiary of CSR), to state and federal government bodies. Legal claims focus on proving that there was a failure to warn of the dangers or of the need to take precautions, or to provide ways of minimising the asbestos dust. “It ranges from failure to put a warning on the product to failing to inform the public of the known dangers”, says Ms Kent.

As lawyer John Gordon writes in this issue of the Journal , neither James Hardie nor CSR have ever taken any steps to systematically warn people of the dangers of asbestos products in their homes, or “of the potential for fatal consequences in 20 to 40 years if they demolish those products today”.

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Both Mrs Hyde and Mrs Carbon have had chemotherapy. “I’m waiting for 4 weeks to see if the cancer has shrunk. I’m a bit in limbo at the present”, says Mrs Hyde. A grandmother of 10, she is enjoying time with her family. Twice a week she helps with reading lessons at the school where her daughter works. “That’s been fabulous”, she says.

She used to be a keen lawn and tenpin bowler, but the cancer and treatment have tired her out. “I was always reasonably active, and then to get something like this and it mucks everything up. It is hard but I’ve got a good family. You just have to keep on going.”

Mr and Mrs Carbon are also pushing on. With the oversized fishing rods packed in their motorhome, they’re taking their minds off the diagnosis for a few weeks. “When I was first told it was mesothelioma I thought, ‘how am I going to get this out of my mind? I was thinking about it all day’”, Mrs Carbon says.

Mr Carbon says the couple are only now coming to realise the full impact of the diagnosis. “But we’re boxing on and trying to enjoy life, making the most of every minute.”