Shirley Cuff Cancer Research Foundation helps find potential biomarkers for personalised treatments.
Grief turned Jeff Cuff into a man on a mission. He needed a purpose, a strategy that might wring some meaning out of the cruel loss of his wife and friend of 38 years. He wanted to create something that would remember her in the most powerful way imaginable.
The result is the Shirley Cuff Cancer Research Foundation. Its first partnership is in supporting the work of the Walter and Eliza Hall Institute colon cancer research team.
“Shirl had always been a fit, robust, out-there sort of person,” says Jeff. She wouldn’t indulge so much as a cold – she had too much to do. Their three children were grown but she reveled in friendships, was devoted to her rambunctious, deeply-connected Sri Lankan family and found great satisfaction in a long career as a scientific officer at Sydney’s Concord Hospital.
But for several years Shirley struggled with abdominal discomfort that had been diagnosed as irritable bowel syndrome after ruling out ovarian cancer. Jeff suspects now that she didn’t let on quite how nasty the pains were, but they persisted. After an agonising episode one morning in 2009 the couple sought out a second opinion. Jeff wrestles with terrible regret they didn’t take that step sooner.
The new doctor ordered a colonoscopy. “I vividly recall the doctor coming out and saying ‘we need to have a chat’,” says Jeff. “And the news was broken that she had not just colon cancer, but advanced colon cancer, past stage four. It had gone through the wall of the bowel and was already in her liver.
“We had on our bucket list to go to Tuscany. So the choice was to think about that, or start treatment rigorously with the hope it just might do something. But with that diagnosis Shirl didn’t want to leave her family.” And so she had surgery, a bowel resection, and began aggressive chemotherapy, followed by internal radiation and ablation therapy, which uses microwaves to try to destroy tumors. The treatments were toxic and the side effects gruelling.
Meanwhile Jeff, who knew his way around the medical landscape having long worked as an executive in the biochemical and biopharmaceutical industries, began investigating other treatment options. He arranged to send biopsy samples to the United States for molecular profiling – an emerging treatment option identifying a patient’s biomarkers, their individual biological measurements, and optimal treatments. It could also identify drugs that were unlikely to work.
“The results came back and suggested a particular drug that was well down the pecking order of treatment options,” says Jeff. The drug was a savage one, and by then Shirley was too sick to endure the side effects.
The potential of biomarkers
Shirley Cuff, 61, died at home surrounded by her family on 20 July 2013. Jeff was shattered. He threw himself into the task of setting up a foundation in her name. He developed a relationship with the NSW Cancer Research Council, visited research institutions around the country, talked to countless professors and laboratory leaders, scoured the internet for new discoveries. “People in these places are so willing to give you time if you show half an interest.”
He came to Melbourne to visit the Walter and Eliza Hall Institute, and was ushered up to the boardroom where he shared Shirley’s story with half a dozen senior scientists. He wondered out loud about the potential of biomarkers to personalise and optimise treatments, and was gratified to see heads nodding around the table. Then each of the researchers shared with him a synopsis of their work.
Foundation to channel donations
Certainly they were all likely aware that he was a man looking to donate to a cause close to his heart. “But I didn’t feel at any stage that it was about how much money was in my pocket. And the inclusiveness of it – it was just obvious that this was the place I needed to be.”
Jeff set up the foundation to channel donations directly, in its first phase, to Professor Tony Burgess’ work investigating the role of a protein called APC as both a protection against colon cancer and, when damaged, a trigger for it. “The potential is for what might be a very easy treatment, it sounds very attractive, and because it involves drugs already in use there won’t be the lag time of a new drug.
“So hopefully we can get something out there to all the other Shirls a lot quicker.
“The other big interest I have is understanding biomarkers to direct people to the most appropriate treatment. Dr Oliver Sieber is doing a lot of great work in that area (at the institute), and I plan to link up with him as a supporter and an advocate.”
“I’m hoping that in just a few years there is an answer to colon cancer. And then maybe the Shirley Cuff Cancer Research Foundation can focus on pancreatic cancer, where there are still just horrific outcomes.”