An Australian woman whose asbestos-related cancer was misdiagnosed twice says doctors and patients need to be more aware of the symptoms of mesothelioma.
Two months ago Ruth Rose and her husband, Geoff, from Tuross in NSW, were getting ready for the trip of a lifetime — they were headed to New York to travel along Route 66.
But when she got off the plane in New York, Ms Rose could barely breathe.
“I was shocked to find that I had a chest cavity full of fluid, because it’d never entered my head that that was the problem,” she said.
Her lung had collapsed; one doctor said it resembled a sponge full of water.
“I remembered that my brother had fluid with his mesothelioma, so I told them I’d been exposed to asbestos and [the doctors] knew what to look for, then,” Ms Rose said.
“It gave them the clue to do further tests to prove that that’s what it was.”
After surgery to drain the fluid, a biopsy from the lining of Ms Rose’s lung confirmed she had developed the asbestos-related cancer that her brother is also fighting.
“It was like I was outside my body, like it was happening to somebody else not me,” she said.
Mesothelioma is a terminal cancer with few treatment options. It is nearly exclusively caused by asbestos, but it is hard to diagnose.
It was an extreme way for Ms Rose to find out, especially after she had sought help from her doctor for chest pain and shortness of breath — common symptoms of mesothelioma — twice in the week before her trip.
“[My GP] sent me in to the hospital where they said they were going to do an ultrasound of my abdomen — thinking it was a gall stone — and a chest x-ray,” Ms Rose said.
“But because they were so busy and small-staffed, they did the ultrasound and said, ‘double your [medication] and go home, you’re fine, no chest x-ray’.”
On the second occasion, a day before she flew out, her doctor told her to call paramedics.
“And they said, ‘look we’ve been watching you breathe, you seem to be okay, you’ve probably pulled a muscle in your back, you’re right to glide’,” Ms Rose said.
Symptoms similar to other conditions
Part of the problem was how similar the symptoms of the disease were to a range of other conditions like asthma and emphysema, said Dr Samantha Herath from not-for-profit integrated cancer treatment centre Chris O’Brien Lifehouse.
“It’s not simple, certainly not simple to diagnose at the beginning,” she said.
“Having vigilance and a patient saying that they had exposure helps to raise red flags, and even at specialist levels it’s a combined diagnosis that requires a biopsy.”
In Ms Rose’s case, she told her doctor when her brother was diagnosed last year that she had been exposed to the toxic substance.
She lived in Wittenoom — a former asbestos mining town in West Australia that has since been closed after growing health concerns — for 11 years with her brother during the 1970s and 80s.
“Neither of us thought to mention it,” Ms Rose said.
“I didn’t really believe I was seriously ill, I didn’t know what it was, but I’m a tough ancient girl.”
Ms Rose said even with what she knew from her brother’s experience, she had no thought she could also have the disease.
“I probably was getting small signals but didn’t realise it,” she said.
“I place it all down to my age … I just didn’t bother going to see anyone because I just didn’t reckon anything was seriously incorrect.”
Greater awareness of symptoms needed
Ms Rose’s misdiagnosis experience was not an isolated incident, said National Asbestos Diseases Foundation president Barry Robson.
“It’s a terrible terrible tale, but it highlights the fact that most GPs in this day and age, even with all the publicity of all the dangers of asbestos, can still misdiagnose an asbestos-related disease,” he said.
Mr Robson said he was concerned that public awareness of the dangers of asbestos were slipping, despite it occurring across the country.
“I reckon people have got a bit complacent,” he said.
“The possibility of being exposed is still there; we keep trying to make the public aware that the danger of asbestos is still present in our community.”
Last month, asbestos was found in the Alice Springs Hospital pathology building, and has also been learned in Perth Children’s Hospital.
It has been a long-standing issue in Canberra, with a number of homes insulated with Mr Fluffy still to be demolished.
After spending 11 days in a New York hospital, Ruth is now back home trying to work out exactly how far her mesothelioma has progressed.
She said she knew she would not beat the cancer, but was determined to make the most of the time she had left.
“I’m going to have the largest party you can imagine and invite all my friends, I don’t want them celebrating after I’ve gone,” Ms Rose said.
“I want to celebrate my life with them.”
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