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.

The Saturday Paper - - The Week Contents - 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.”

Ovar­ian can­cer sur­vivor Kristin Young.

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