A Sydney mum who has to use her superannuation to access a drug for ovarian cancer says not enough is being done to improve survival rates.
“I feel like I have a responsibility to scream and shout loudly about it and say ‘hey, this is killing women in Australia’,” Vanja Wilson, 39, said.
Wilson was diagnosed with advanced ovarian cancer in May after her initial symptom, a golf ball-sized lump on her abdomen, was dismissed.
Her GP thought it was scar tissue from having two caesareans but sent Wilson for an ultrasound.
“It came back saying it’s probably just a muscle tear, nothing to worry about,” she said.
Six months later, she discovered blood in her stool and a colonoscopy confirmed it was cancer.
“We knew from the biopsy that it was ovarian cancer but we didn’t know how much it had spread,” she said.
Wilson was diagnosed with stage 4 ovarian cancer which meant it had spread to other parts of her body.
Doctors performed six hours of surgery to remove the cancer and Wilson has just completed 16 weeks of chemotherapy.
“This is the problem with ovarian cancer, it’s found so late,” she said.
“I was so full of energy and life and just would never have assumed.”
About 70 per cent of women with ovarian cancer are diagnosed when the disease is already advanced and for those with stage 4, there is a 90 per cent chance the cancer will return even after aggressive treatment.
Wilson is throwing everything at the disease, including funding a drug that will delay its return, but that will come at a huge financial cost.
She is tapping into her superannuation to help pay for a daily pill called Zejula which is only available on the Pharmaceutical Benefits Scheme for those with an inherited cancer gene.
“At this point, I’m not talking about retirement, I’m talking about survival,” she said.
The Ovarian Cancer Research Foundation says while the decision to list drugs on the PBS is based on clinical evidence, many women like Wilson are disadvantaged due to the subsidy limits.
“I don’t think it’s acceptable with such few treatment options for women with ovarian cancer,” said Robin Penty, Ovarian Cancer Research Foundation CEO.
“It’s heartbreaking. I think all women with ovarian cancer face significant financial hurdles.”
Despite Vanja’s own battles, she raised $25,000 for the foundation, which has provided seed funding to researchers such as Professor Carlos Salomon Gallo at the University of Queensland.
His work on a blood test has received a significant boost, with further funding from the OCRF and the federal government awarding more than $1.4 million through the National Health and Medical Research Council.
A study, involving 1000 women has already shown that the test called OCRF-7 is over 90 per cent accurate in identifying stage 1 and 2 ovarian cancer.
That compares to the current CA-125 test which identified ovarian cancer in 60 per cent of the patients.
The test identifies the exosomes or bubbles of information that are released from the tumour cells on the surface of the ovary and fallopian tube into the bloodstream.
“If everything goes as we plan, we should be able to have enough data to make a decision about, are we able to actually deliver this test to the community in around three to four years time,” said Professor Salomon Gallo.
He knows that early detection is vital to boosting survival rates.
“The majority of women who suffer from this terrible disease don’t have any symptoms. In the future we’d like to implement this test as a screening program for the Australian population,” he said.
Five women are diagnosed with ovarian cancer every day in Australia and the average five-year survival rate is 49 per cent compared with 92 per cent for breast cancer and 74 per cent for cervical cancer.
“We have screening for bowel cancer, we have vaccines for cervical cancer, there’s nothing for ovarian cancer and you know, I have two daughters. It’s just scary,” Wilson said.
