An office in the Albury Wodonga Regional Cancer Centre is currently one of three sites nationwide undertaking crucial clinical trials for treatments.
The Border Medical Oncology Research Unit has run more than 7000 trials since 1999 and continues to build a reputation internationally as instrumental in putting drugs on the market.
Research Team Manager Jacqui McBurnie said among those drugs was Olaparib, recently approved on the PBS for women with advanced ovarian cancer.
“We are involved in the ANZGOG group, the Australian New Zealand gynaecological oncology trial group,” she said.
“They do a lot of investigator-lead clinical trials, ones that are unfunded.
“Those (trials) aren’t supported by big pharmaceutical companies, so they cost quite a considerable amount to run, but are asking important questions.”
Fiona Tuthill, business manager for the research unit, said this was were the Border Ovarian Cancer Awareness Group stepped in.
“That’s where BOCAG has been amazing in funding a research nurse for two days over three years,” she said.
“We would not be able to do those type of studies, did we not have that assistance.”
The Kelsey Watts memorial research grant, providing $108,570 over three years, is the only community-driven funding source for the unit to undertake specific cancer trials.
Ms Tuthill said without the grant, the experience of Border residents would be quite different.
“We would be referring local patients to Melbourne and Sydney,” she said.
“Clinical trials can give patients early access to something that will become standard care later, but hasn’t been listed on the PBS.
“If we don’t get the patients on trial, the scientists don’t get the data they need.”
Ms McBurnie, who has been part of the research unit for 13 years, said the Border’s international reputation flew under the radar in the wider community.
“There are times where we are one of three sites globally open, in which case you get really far-reaching referrals,” she said.
“People don’t realise research is being done locally – a lot of people think they have to go to the Peter Mac Centre or somewhere in large metropolitan centres.”
As for ovarian cancer specifically, Ms McBurnie said research was now looking at the disease on a “molecular level” and how to target mutations.
“The problem is, women with ovarian cancer are diagnosed in very late stages,” she said.
“It comes back to awareness of the symptoms.
“What BOCAG is trying to do is raise awareness, so people know the symptoms and present to their GP sooner rather than later.”
Almost 70 per cent of Australians don’t realise ovarian cancer is symptomatic and half of women wrongly think it can be detected through a pap smear.
These statistics were released on Teal Ribbon Day as part of national campaigning, as the Border Ovarian Cancer Awareness Group spread the word locally.
The lack of knowledge about the cancer is something BOCAG secretary Karen Ferguson knows well.
“Heather (Watts) was my best friend and it was really devastating when her daughter died … it’s really hard to get over,” she said.
“No one knew about ovarian cancer; that’s why we started this group.”
Ms Ferguson said things had changed – for the first time, teal ribbons were being worn in parliament house for the entire awareness month of February.
“It’s grown and grown; now we have the Kelsey Watts research grant,” she said.
“We all advocate for women to have an internal ultrasound and watch for the symptoms.
“It’s just a terrible disease, so the more awareness we can get out there, the better it is for everyone.”
The research grant would not be possible without community support of BOCAG’s various events.
Their second fundraising sky-diving day will be held next Saturday.
For details on how you can support the event, go to www.facebook.com/borderovarian.
When a woman is diagnosed with ovarian cancer, she will go through intensive surgery and chemotherapy.
But it comes back.
After another batch of treatment, she will go into remission, but it won’t be long before once again, scans confirm her worst fears.
This common trajectory is why Jane Hill, chief executive of Ovarian Cancer Australia, calls the disease ‘mind-bendingly-cruel’.
“This cycle will be repeated until the cancer cells become resistant to the chemotherapy,” she said.
“The five-year survival rate is 43 per cent, well below the average for all cancers.”
The rates are this dismal when the cancer is identified at an advanced stage – when it is detected early, women have an 80 per cent chance of being alive after five years.
The problem is, early detection occurs in only 15 per cent of cases.
In the absence of a screening process, Ms Hill said it was important women learnt the warning signs.
“Ovarian cancer has been found to be not just one type of cancer … that makes a population screening test very difficult,” she said.
“We recommend a CA125 blood test and internal ultrasounds … those tests can help put the puzzle together.
“Women should be asking whether there is any history of breast or ovarian cancer in their family.
“We are concerned about the treatment options; they haven’t really changed in 30 years.”
In saying this, the listing of Lynparza (or Olaparib) on the pharmaceutical benefits scheme last month was considered the biggest development in that time.
The drug is relevant for about 20 per cent of women who are in advanced stages and have a BRCA gene mutation.
Thanks to the listing, the cost of the drug dropped from $2250 to $38 per month, offering women an extended remission and valuable time with friends and family.
Ms Hill welcomed the news, but said more needed to be done – in honour of the woman who dies every ten hours of the cancer, and the 7750 who would be diagnosed over the next five years.
“Breast cancer has got a 90 per cent survival rate – it is through government funding and the work of community that we’ve made so many inroads,” she said.
“We want the same for ovarian cancer.”
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