Everyday, four women are diagnosed with this type of cancer, and three women will die from it. Only 46 percent of the women will reach a five-year survival point.
Few of us are aware of these starling facts about ovarian cancer. Including Paula Benson. Benson was 34 when she took herself to her GP after experiencing a range of unusual symptoms.
“I noticed a real change in my urinal and bowel actions,” she told me over the phone. “I couldn’t fit into my clothes. I had this tummy, even though I was exercising and eating so well.”
Benson’s doctor sent her to undertake a trans-vaginal ultrasound. It was there the doctors discovered a large cyst attached to her ovaries.
“I had no history of ovarian cancer,” she says. “But I was incredibly fortunate. I was taken straight to a gynaecological oncologist and a surgery was booked for me.”
Benson was unaware however, that during the procedure doctors were forced to take out her ovaries, fallopian tubes, and cervix. She’d undergone a radical hysterectomy.
“The loss of my fertility was devastating to me,” Benson said. “But five days after my surgery, they told me my cancer had been contained.”
Benson acknowledges that her story is rare. “Unfortunately for most women who are diagnosed, the cancer is discovered at a late stage, so there’s a lower survival rate. It’s so important to know the symptoms and if they persist, women should see their GPs and then be referred to a gynaecological oncologist.
So what are the main symptoms of ovarian cancer? [From the Ovarian Cancer Australia (OCA)]
Abdominal or pelvic pain, pressure or discomfort
Increased abdominal size
Persistent abdominal bloating
Excessive fatigue or lethargy
Needing to urinate often or urgently
Changed bowel habits
Feeling full after only eating a small amount
Unexplained weight loss or gain
Bleeding in-between periods, or
Paula Benson’s survival from ovarian cancer inspired her to join OCA in 2007 as a board member, where she stayed for 11 years. She went on to build a support team for patients and their family and friends.
“At the time I was going through treatment, there was no support group for young women who’d been through the cancer,” Benson said. “Ovarian cancer can be a lonely diagnosis. Recurrence rate is very high. Because of that and the way it can eat away at people and affect their mental wellbeing, our support serves are so critical.”
Before joining OCA, Benson had a long career in government affairs, and knew she had outstanding skills she could bring to an organisation like OCA.
“I’ve since made life long friends as part of that work with OVA. I wanted us to be really ambitious. We provide support and advocacy for women — we want to advocate on patients’ behalf and get them access to new treatment. I also knew that we couldn’t just be best at support and advocacy alone. We also had to drive the research agenda.”
Chair of OCA, Marina Go agrees that support within the community of survivors and patients is crucial, including support which came in more unconventional ways.
“Ovarian Cancer Australia produces a Resilience Kit that is distributed to women when they are diagnosed,” she says.
“The kit helps them understand what to do next and who to speak to. Our increased distribution of the kit during the past two years has been mainly due to our collaboration with health professionals. We have built great relationships with the key gynaecological oncologists as well as the gynaecological centres of excellence.”
Technology has also improved the lives of survivors. According to Go, it has assisted the growth in access to information for women living with ovarian cancer.
“During Ovarian Cancer Awareness Month last year, we had almost 150,000 page views for the month to our signs and symptoms page,” she wrote. “We also have an “always on” highly targeted social media campaign to ensure all those diagnosed are offered support services as early as possible. We gain a lot of referrals via private messaging on Facebook.”
Under Benson and Go’s leadership, the OCA have developed a national action plan for Ovarian Cancer research which was published in 2015 and has since been refreshed in 2019. It was Australia’s first National Action Plan for Ovarian Cancer Research, which aimed at strategy building to address the ovarian cancer research effort.
“That’s a blueprint for how Australian needs to address research to get the best outcomes,” Benson said. “Ovarian cancer is a very complex disease. There are four sub-types and they’re all very different. We have to address research across the spectrum. We want to make sure we push for early detection.”
“We need faster, more agile trials,” she added. “We need more funding. We need bio-banks to support researchers.”
The pair joined forced to advocate for $3 million in Federal Government funding for the TRACEBACK program, which is one of the ovarian cancer prevention programs, instigate a National Clinical Quality Registry for Ovarian Cancer and secure $20 million for ovarian cancer research from the Medical Research Future Fund.
Go believes the research grants provided by the government is critical for building a brighter future for cancer patients and decrease mortality rates.
“Although the Federal Government has committed significant funds to ovarian cancer organisations for research and support in recent years, it remains underfunded by comparison,” she said. “So we rely on the generosity of donors and our commercial partners to fund gaps in our annual programs.”
She thinks one of the most important factors in this brighter future is creating awareness around the cancer. One of these events is the Teal Ribbon Day.
“The work that Ovarian Cancer Australia has done over the past few years to elevate awareness of the cancer through marketing of our Teal Ribbon events and activities has meant that more Australians are likely to have at least heard of the cancer than ever before,” she wrote.
“Twice as many people know that the Teal Ribbon is for ovarian cancer than they did 2-3 years ago. However, compared to pink meaning breast cancer we are only at around 30 percent of the awareness that they have so there is still a lot of work to do.”
“OCA works with real women who are living with ovarian cancer or the fear of a relapse. We help them tell their stories because it’s important that we understand there is no typical candidate for the disease. Ovarian cancer can strike at any time and we have worked with women in their twenties right through to women in their sixties. The stories are devastating but we must continue to tell them so that we can be alert to the realities.”
One of the most harrowing yet inspiring stories recently told was by Caitlin Delaney, an IVF scientist who shared her personal story in front of the nation’s leaders at the Teal Ribbon Parliamentary Breakfast earlier this week in Canberra. She spoke of the country’s need to change the story of ovarian cancer, and suggested ways to improve outcomes for the 1,500 Australian women diagnosed with ovarian cancer each year.
“When you tell people you have ovarian cancer, there’s this face they get — it’s the Ovarian Cancer Gaze,” Delaney said. “An expression of compassion, fear, and pity. Sometimes people can’t even meet your eyes, because they think they know what your story is, or more significantly, how it ends. A doctor even once said to me: “This is just the story of ovarian cancer. This is what happens.”
“Well quite frankly, that’s not good enough. It makes me want to scream. Because we CAN change the story. Thirty years ago, women like me were getting the Breast Cancer Gaze. Now, when someone tells you they have Breast Cancer, what do you say to them? You say: “You can beat this. It is not a death sentence. There is hope. Let’s get to work.” I want to hear someone say that to me.”
Marina Go, who attended the Teal Ribbon Parliamentary Breakfast and watched Delaney speak, wants to see a nation where every woman living with ovarian cancer has access to support whenever and however she needs it.
“Ovarian Cancer Australia is the organisation that focuses on supporting the women and their families and we have a fantastic team of support nurses who offer our women support remotely, mostly via a phone call,” she says.
“Our dream is to fund ovarian cancer nurses so that all women who are diagnosed can sit down and talk to someone in person as the diagnosis usually comes as a complete shock to them.”