‘Women Are Needlessly Dying’: Calls For Ovarian Cancer Funding As Leading Advocate Farewelled
Six women have candidly shared their gut-wrenching and inspirational ovarian cancer journeys to ensure their voices are heard after Pink Meets Teal founder, Jill Emberson, was farewelled in Newcastle on Jan 23.
Emberson launched an organisation that aimed to see ovarian and breast cancer equally supported and was instrumental in securing tens of millions of dollars for research and clinical trials.
“There’s not many ovarian cancer advocates left. We lost quite a few of our really big voices in the last few years,” Carla Bower, an advocate for ovarian cancer awareness, told 10 daily.
One of those was Queensland Young Australian of the Year Finalist, Kristen Larsen.
She died just before Christmas and within days of Emberson - she was 27 years old.
“We need them not to have died in vain so hopefully, hopefully in the future, we won’t just be dying.”
The five-year survival rate for ovarian cancer remains at just 46 per cent, compared to diseases like breast cancer which has a 91 per cent survival rate.
Bower was diagnosed with terminal Stage Four ovarian cancer in 2017, which developed in just three months between careful monitoring.
“Women are needlessly dying. There’s more that can be done,” she said.
“Breast cancer survival rates are incredibly high and that is through dedicated research and advocacy."
Bower also carries the BRCA gene which was made famous by actress Angelina Jolie and is known to give a predisposition to breast and ovarian cancers.
“I have five daughters, four of them are over 18. They’ve been tested for the BRCA gene and three of them carry it," she said.
So, we need funding, we need research and they need hope.
Tasha Armour was so determined to support research after her 16-year-old daughter was diagnosed with a rare form of ovarian cancer, that she launched a charity.
"I started up a foundation called Rare Ovarian Cancer Incorporated known as ROC Inc.," she told 10 daily.
In their first year, they were able to launch a research project into the rare disease, where Australians as young as 11-months and as old as 52 were diagnosed.
She is joined in ROC Inc. by Melanie York, who was also diagnosed with a rare form of ovarian cancer that was fortunately found in its early stages.
“I didn’t need chemo. Chemo doesn’t work on a slow-growing tumour so yeah, I feel a lot of guilt about that,” she said, adding she watched a family friend succumb to the disease.
York described herself as the ‘cancer person’ at work, a role she happily took to help educate women about ovarian cancer.
One of her key concerns is that most women assume a cervical screening or pap test checks for ovarian cancer.
“We call it our ‘special internal wand’,” she said about a pelvic ultrasound. “Because it’s probably the best ultrasound to see your ovaries.”
“It’s not an early detection test, it’s nothing but I’ve just encouraged them to be a little bit more aware of their bodies and that there are things you can ask for as a woman.”
The onus seemingly being on women to ask for help is something that frustrated Jacinta Frawley Werger.
She had no symptoms until sudden bloating right before she received a diagnosis of high grade, aggressive, advanced ovarian cancer.
When I was first presented with this abdominal swelling it really was, you know, you’re a post-menopausal woman, what do you expect?
In her experience, primary care practitioners were “very kind people, they sent me for the right scans but they absolutely no idea about ovarian cancer.”
“One of the GP’s she had, she actually said to me, I didn’t know ascites was a symptom of ovarian cancer. And you just sort of think, well, that’s tough.”
However, there was one group that did screen Frawley Werger for ovarian cancer…her insurance company.
“I have my own business and I have very good income protection which excludes breast and ovarian cancer - because my mother had breast cancer," she said.
“I said to one of my GP’s, well my insurance company screened - I had to tick all my family history and they knew to exclude me.
"The GP’s never spoken to me about ovarian cancer."
Unable to work and still in the early stages of her treatment, which will require multiple surgeries and chemotherapy, Frawley Werger estimated it has cost her around $15,000.
Improving access to treatment is what Kristin Young is determined to do after she was fortunate enough to be accepted into a clinical trial.
“Without this clinical trial, I would be pushing up daisies,” she told 10 daily.
Young was diagnosed at Stage 3, C a decade ago.
“What they’re measuring in clinical trials is getting smarter, so they’re finding ways to look at the common feature of a drug, not just for one cancer type, but for cancers that share common characteristics.”
Ovarian cancer is more than one disease; there are five known sub-types meaning not all women will suit available clinical trials.
There’s still the majority of people with advanced ovarian cancer who don’t have as much freedom to access a drug that’s been such a miracle for me.
A clinical trial is also proving successful for Claire Mitchell who was diagnosed with Stage Four ovarian cancer in 2018.
“You know, we’ve got fabulous researchers but they just don’t have consistent funding,” she told 10 daily.
“It could be your daughter that gets ovarian cancer, your mum, your sister and it’s underfunded.”
Mitchell recently had a 52-week scan that was “all clear”.
“I’m really trying to keep upbeat... I get lots of side-effects but you’ve just got to chin up and get on with it really.”
February is Ovarian Cancer Awareness Month which encourages women to watch out for the warning signs of the disease dubbed the “silent killer”.
The common symptoms of ovarian cancer are: persistent abdominal bloating, pelvic pain, feeling full after eating little and frequent urination.
They also have a helpline if this article has raised any concerns for you or someone you know: 1300 660 334.