HEALTH: Cancer survivors teaching.
A program sparked by an ovarian cancer survivor is bringing fellow patients into medical schools to help guide professionals in their approach to the deadly but often undiagnosed condition, writes Cat Rodie.
Bronwyn Grout was just 31 when she was diagnosed with stage 3 ovarian cancer. It came as a huge shock. Although she had been suffering from symptoms such as “periodlike” pain, her health practitioners had been telling her that at her age, there was nothing to worry about. Statistically, the chances of Grout having ovarian cancer were slim. So when her symptoms could be explained away with more obvious reasons, a miscarriage and a history of period pain, the possibility that it could be something much more ominous was overlooked.
Sadly, Grout’s story is not unusual. The symptoms of ovarian cancer – such as abdominal and pelvic pain, bloating and changes to bowel movements – are notoriously difficult to spot and easily mistaken for other more common illnesses such as irritable bowel syndrome.
In Australia, about 1500 women are diagnosed with ovarian cancer every year. The prognosis is bleak; only 43 per cent of women diagnosed at the advanced stages of the disease will survive for more than five years. For this reason, it has become known as the silent killer – a diagnosis with stage 4 ovarian cancer is considered a death sentence.
For Grout, who underwent surgery and chemotherapy for stage 3 ovarian cancer, the statistics were sobering.
“I was fundamentally changed by ovarian cancer. I had a lot of trouble trying to understand what my future was going to be – the statistics were so terrible. You know, 40 per cent survival… Do you start hoping for the future, or do you not?” she says.
Grout, now 42, made a full recovery. But living, when others hadn’t been so lucky, provided a different sort of challenge. “It was really difficult to get back into life. I wanted to make sense of how other women that I had met in treatment had already passed away and yet somehow I was surviving.”
Grout, who now lives in Dundas Valley in New South Wales, was living in the United States at the time of her treatment. She wanted to find a way to channel her energy into something positive and started looking for groups with which to get involved.
“There were a lot of groups doing political activism, which wasn’t really me, and others doing fundraising. I did do some of that – the odd walkathon and morning tea – but it’s hard to fundraise on an ongoing basis,” she says.
When she stumbled across the Survivors Teaching Students (STS) program, Grout immediately knew she had found the right cause. During STS sessions, ovarian cancer survivors give presentations to groups of medical students to increase their awareness of the disease.
The program educates trainee doctors and other medical professionals about the symptoms of ovarian cancer and the importance of asking the right questions. Rather than diagnosing in line with the odds and assuming that presented symptoms are a sign of a more common ailment, such as IBS, STS urges doctors to rule out ovarian cancer first.
It sounds simple enough but it could save a lot of lives. As Grout says, “If you misdiagnose IBS, you’re uncomfortable. You misdiagnose ovarian cancer, then there is a 60 per cent chance you’ll be dead.”
Grout started volunteering at the hospitals in the New Jersey/New York area as a survivor, telling her story to hundreds of medical students. “I found it hugely rewarding, being able to actually make sense of my story and knowing that there’d be some value to it – that my story might help other women get diagnosed in the future,” she says.
When she returned to Australia in 2014, Grout started looking for an STS program to join. But none of the major cancer organisations were running programs of this nature. Taking matters into her own hands, she started canvassing for STS to be launched in Australia.
Her efforts paid off. Together with Dr Helen Gooden and the Australia New Zealand Gynaecological Oncology Group (ANZGOG) and with support from Cancer Australia’s Supporting People with Cancer grant initiative – funded by the federal government – an Australian STS program became a reality, piloted in Sydney.
For Gooden, the power of STS comes from the volunteers, all of whom have firsthand experience of ovarian cancer. “Some women are still undergoing treatment, others are being followed up regularly, and some have passed the five-year survival milestone,” she says. “Some of our volunteers are husbands, partners or siblings of women who have already been lost to the disease.”
Of course, due to the nature of ovarian cancer, there are times when STS volunteers can’t keep up with the demand for presentations. Medical appointments and, sadly, disease recurrence are issues that organisers need to keep in mind. “We’ve seen already in Sydney that nearly half of the volunteers recruited last year have had to take a break or withdraw. And tragically, due to the nature of the disease, we have to prepare for the eventuality that some volunteers may die from their disease,” says Gooden.
For the volunteer presenters of STS the benefits are enormous. Gooden notes that for many, having the opportunity to share their story is extremely empowering and provides a huge sense of reward.
“Our volunteers get to make an impact on the future of the health system and medical community. They are raising awareness of ovarian cancer, the signs and symptoms, and crucially, the importance of early detection and diagnosis, which give women the best chance of survival,” Gooden says.
Kristin Young, 55, is an ovarian cancer survivor. She has been involved with STS since the initiative launched in Australia. “I get such a feeling of satisfaction from doing the presentations. It’s nerve-racking – but it’s so worth it,” she says. Young notes that although some of the presenters she shares a stage with have heart-wrenching stories, her personal style isn’t emotional.
“I’ve got quite a dark sense of humour,” she says, laughing. “I actually think it works quite well. It’s a mirror of what doctors and nurses will encounter in practice. One minute they’ll have a patient who is blasé and optimistic, the next they’ll see someone who is crying and devastated.”
STS is well established in the US, Britain and Canada, where surveys show it’s working. The US program, initiated by the Ovarian Cancer Research Fund Alliance, currently has 811 active volunteers working in more than 100 medical schools. In 2015 they educated 10,266 medical students. A review of the program showed medical students demonstrated a 21.4 per cent increase in knowledge of ovarian cancer.
So how are medical students in Australia responding to the program? Robert Dewar is a fourthyear student at Sydney Medical School and the 2018 president of the Northern Clinical School Medical Student Society. He was at one of the first Australian STS presentations in November last year.
“The session began by asking us to reflect upon our own experiences, noting everyone in the room has known someone who has been touched by cancer at some point in their lives. It set the stage for open discussion of a topic that impacts everyone at one time or another,” Dewar says.
Hearing from cancer survivors directly allowed him to set aside his medical theory and experience the “whirlwind” of a cancer diagnosis and treatment.
“It was valuable to hear from women and families directly about what we can do in our clinical practice to provide the best possible care to our future patients, no matter what specialty we are in,” he says.
“It also reinforced transferable skills, including breaking bad news and dealing with bad news, where your communication and who you are as a person become just as important as who you are as a doctor/clinician. It also showed us the human aspect of medicine.”
Bronwyn Grout is optimistic about the future. Not only has she been cancer free for more than a decade, she has also been able to have three children, using donor eggs. “I’m kind of one of these anomalies in the statistics, where I’ve had no recurrence, and I’m perfectly well, 10 years on,” she says.
She has high hopes for STS, too. “I’d like to see STS rolled out around Australia so that every medical student that comes through has the opportunity to be in an STS session. And then, when a woman walks into their office they might think twice about what her symptoms might mean.
“I think it’s going to mean a lot to the women involved and make a big difference to the next generation of doctors.”