My mother died from ovarian cancer, and it was awful.
Something I’ll always remember about Mum is that she hated swearing – she would tut her tongue and give a hard sigh whenever she heard it on the TV, or if she caught one of us kids.
But I’m sure Janet Smith would allow me this: ovarian cancer is a f***ing bastard of disease.
The survival rate is terrifyingly low and it kills more than 1000 women in Australia every year.
Because, almost always, by the time a woman knows she has it, it’s far too late. This is how the story usually goes: woman visits doctor with bloating and pains. Woman has tests. Doctor tells woman she has tumours in her ovaries. Woman gets some treatment. Woman dies soon after.
The symptoms are so non-specific that they’re often dismissed by patients and GPs as something else.
I asked 20 women this question: “What is the early detection test for ovarian cancer?”
A staggering majority — about 17 — said either the pap smear, or the HPV vaccine, or there was a test but they weren’t sure what it was.
A couple of them said they didn’t believe there was a test, but only one had the right answer: there is no early detection test for ovarian cancer. Nothing.
And I’m talking about smart, well-connected, strong women. Yet most believed that their ovaries where being protected by tests and vaccines for cervical cancer. They had no idea how little power they had over ovarian cancer.
From here, there is good news and bad.
Good: I’m told there is real hope for the development of an early detection test and trials have begun.
Good: the test could be available within five years.
Bad: the government is not putting a cent into it.
I had contacted the office of federal Health Minister Greg Hunt and asked what money was going into the development of an early detection test. They replied with a list of programs and funding for ovarian cancer. And it’s pretty good, but that wasn’t the question.
When I pushed for an answer, they said early detection was covered by a project called TRACEBACK — where women are identified with the BRCA1/2 genes that put them at risk of ovarian and breast cancers.
Unfortunately, these genes are present in only 10 to 20 per cent of women with ovarian cancer. It’s not even close to being an early detection test — it only signals who may be at risk.
Then I also asked the office of the Opposition’s Catherine King. She lost a friend to the cancer and certainly cares.
They told me if she becomes health minister, she would commit funding to treatment, recovery and research. But again, that wasn’t the question. After pushing for an answer, you find the Opposition has no plans to commit money to developing early detection tests and they base that decision on a document called the National Action Plan for Ovarian Cancer Research. It’s an impressive document but it was released on 2014 and is based on data collected between 2008 to 2013.
Professor Magdalena Plebanski from RMIT University, is one of many passionate about the pursuit of an early detection test.
“Enormous strides have been taken in the last few years in identifying markers for potential tests,” she told me.
And Professor Ian McNeish, director of the Ovarian Cancer Action Research Centre in the UK, says “Ovarian cancer early detection programs are becoming more of a reality as researchers have made great strides in understanding the biology of the complex disease.”
Greg Hunt and Catherine King can’t be accused of ignoring ovarian cancer, but there is some ignorance in both camps. And without their money, development for the tests will remain slow in Australia.
Ovarian cancer doesn’t get the attention of other cancers and disease, mainly because there are very few survival stories to tell. Most tales have no triumph just misery and death.
But as more women start to realise that they are untested, they must start pushing our leaders and demanding that money be spent on the development of early detection tests.
By 2025 — with money and determination — every Australian woman should be able to write “ovarian test” in their diaries.
Even more than swearing, Mum hated missing out anything. She would sit at a crowded dinner table and involve herself in three different conversations at once. The idea of missing a bit of news, or a joke, even one word, was unthinkable.
Our sadness comes from knowing all the things the grandkids would have told Mum are lost to her.
No more women should have to miss out – not if there is something we can do about it.
Justin Smith is a 3AW presenter, Herald Sun columnist, and an ambassador for the Ovarian Cancer Research Foundation
Article taken from the Herald Sun, 28 March, 2019, p.21