Why Joe Roff says it no longer feels right to call footy players courageous

Joe Roff is well known in Canberra for his rugby career and his work as chief executive officer of the John James Foundation.

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What is less well known is the shadow that cancer casts across three generations of his family.

Joe Roff says whatever member of his extended family is facing cancer, the whole family will be supporting them in the fight. Picture by Keegan Carroll

After taking to the field as both a Wallaby and a Brumby, when heroes are often mentioned in the sporting realm, Mr Roff said his extended family’s experience with cancer had redefined what courage means to him.

“There’s this false definition of courage about going out to play footy, compared to when you are actually dealing with things that are serious in life and that actually do matter,” he said.

“I’ve redefined what courage means when I look at my cousins and how they’re dealing with this and my uncles who are advocating and speaking publicly about this to build awareness.”

On Wednesday night, Mr Roff for the first time publicly shared that 17 members of his extended family, across three generations, carry genes that put them at a heightened risk of developing cancer.

Thankfully, Mr Roff is not affected by the gene mutation, nor are his own children. His brother Jake died in 2015 at the age of 41 from brain cancer, but that was not due to anything genetic.

“My brother’s death is what’s called a ‘general population cancer’. There was no rhyme or reason as to why that happened and it was just extremely unlucky. If you look at our family as a forest of trees, someone came in and chopped down a big oak, which was Jake,” he said.

“Genetic cancer is a bit like someone come into that family forest with a flamethrower and hit a whole lot of trees.”

The people living with the increased risk of cancer due to genetics are Mr Roff’s much-loved uncles and cousins.

Joe Roff’s five uncles all inherited the BRCA1 gene mutation. His father, Glenn, was the only one of the six brothers who did not. Picture by Keegan Carroll

On Wednesday night, he spoke at a dinner at the Hotel Realm for Inherited Cancers Australia, of how the BRCA1 gene mutation affected 17 members of his family including men and women.

The BRCA1 mutation stands for the breast cancer gene 1 mutation which increases the risk of people developing cancers such as breast, ovarian, prostate and pancreatic.

His grandparents carried the BRCA1 gene and five of their six sons did as well.

The only brother to escape the gene was Mr Roff’s own father, Glenn.

All the brothers are still alive, including Glenn, the oldest, who is 77.

Mr Roff spoke about his family’s experience as Inherited Cancers Australia launched a campaign to make Australia “a world leader in preventing cancers caused by inherited risk”.

For the large and extended Roff family, genetic testing has been critical.

Joe Roff in 2001 in his Brumbies playing days. Picture by Adam McLean

“That knowledge has meant people in our family have had to make life-changing decisions about screening, surgery and how to manage their risk,” he said.

“One of my uncles was diagnosed with prostate cancer through PSA testing because he knew he was at increased risk. Thankfully, it was detected early.

“Another cousin was diagnosed with ovarian cancer when she undertook her risk-reducing surgery.

“That’s why we need more people to understand inherited cancer risk and make sure families have the information and support they need.”

‘People need pathways’

Inherited Cancers Australia chief executive Sarah Powell said up to one in 100 Australians lived with an inherited cancer risk, yet her organisation had “no sustained funding”.

The new campaign launched in Canberra on Wednesday night – Ahead of Cancer – would bring together health professionals from across the nation to identify where the gaps were in supporting people with inherited cancers and to “drive meaningful change”.

“Genetic testing can provide life-changing information, but knowing your risk is only the beginning. People need clear pathways and support beyond the test so the value of genetic testing can be realised,” Ms Powell said.

“Right now, there are people who develop cancer while waiting for preventive surgery, there’s significant out-of-pocket costs and uncertainty about who is responsible for their ongoing care.

“We have the knowledge and the tools to prevent some cancers and save lives. What we are missing is a nationally coordinated approach to making that prevention possible.”

Mr Roff said young adult members of his extended family were having to be made aware of the risk to them of cancer and have tough conversations about any preventive measures that might need to be taken.

“There’s child-bearing implications, there’s decisions around preventative operations – mastectomies, hysterectomies, various other procedures – that will support your chances of a longer life expectancy as a result but they’re really difficult decisions to make in your 20s,” he said.

Similarly, Mr Roff proudly supported his uncles who in their later years were becoming advocates for people with inherited cancers.

“Blokes are not the best talkers, particularly that generation. That generation are very stoic and very closed and get on with things,” he said.

“I’ve been very proud of their courage to address the issue directly, both publicly and within the family.”

All six Roff brothers and their families – more than 100 people – will gather soon to celebrate Christmas together. Grateful for another year. And grateful for each other.

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