Monash researchers bond with donors to fight rare cancers

Suzanne Neate (right) with her mother Teresa, who died in 2016.

Image: The Aftershock

by Anne Crawford

After Suzanne Neate’s mother Teresa died of thyroid cancer five years ago, Suzanne wanted to make an impact on the lives of other people similarly enduring high mortality rate cancers.

Teresa had spent time in rehabilitation; Suzanne thought of funding equipment, walkers or wheelchairs for those in care. “Then I thought ‘No, the problem is she shouldn’t have been there to begin with – how do you stop someone being there to begin with?’,” she said. “You research – everything comes back to research.”

Suzanne, CEO of The Aftershock, the not-for-profit organisation she founded in 2017, has joined forces on a research project into lethal oesophageal cancer with Professor Wendy Brown, Alfred Hospital surgeon, researcher and Head of Monash University’s Department of Surgery.

L-R: Suzanne Neate with Professor Wendy Brown. The Aftershock
is supporting research into oesophageal cancer.

It’s the third research study being conducted by Monash Central Clinical School (CCS) researchers with The Aftershock. An anonymous donor is funding the project through the organisation.

This year, around 1000 Australians will be diagnosed with oesophageal cancer with only 50% expected to live beyond 12 months and few surviving beyond five years. This is largely because diagnosis is usually made when the disease is advanced.

“At least 50 to 60 per cent of people present at a time when we can’t offer them a cure and the curative treatments we have available are pretty intense,” Wendy said.

Treatments involve chemotherapy and radiotherapy followed by an operation removing a large segment of the oesophagus (gullet or swallowing tube) then recreating a tube from either the stomach, or large bowel that connects the stomach, to the remaining oesophagus, allowing the patient to swallow. “Sometimes this means dragging the stomach up into the chest and even into the neck. It’s bigger than a heart transplant in terms of invasiveness,” Wendy said.

Only a minority of patients diagnosed with oesophageal cancer, perhaps 30%, are physically able to have the surgery and whilst their long-term survival rate is lengthened, quality of life never completely returns, she said. Patients suffer ongoing swallowing difficulties, nausea, severe food intolerance, malnutrition and lethargy. These problems are associated with psychological distress, anxiety and depression.

“Food’s a huge part of our lives, one of life’s enjoyments,” Suzanne said.

Whilst much progress has been made in treatments for more common cancers such as breast cancer, survival rates and surgical techniques for oesophageal cancer have improved little over the past 70 years.

“The reason why the survival rate hasn’t improved is because there’s not a lot of conversations or campaigns out there and not a lot of projects being funded because unfortunately these patients do pass away,” Suzanne said. “If we invest in research it means we’re improving not only the survival rate and extending lives but also improving quality of life, the knowledge of that particular cancer, and stopping people from having those awful hospital stays,” she said.

The Aftershock is supporting CCS research aimed at improving the outcomes and quality of life of those undergoing curative surgery, including optimising swallowing. The research is being conducted by PhD student, surgeon Dr Kaleb Lourensz, who’s developing new techniques to better understand the ‘pulled up’ stomach works after surgery.

The study uses dynamic magnetic resonance imaging (MRI) in concert with high-resolution nuclear scintigraphy – a scan using radioactive chemicals to track food moving through the digestive system – to help evaluate how contraction and emptying of the reconstructed oesophagus evolves over time. It will also compare patients who have a good long-term functional outcome from their gut after surgery, with those with a poor outcome to see what works and what to avoid.  
 
“We’re hoping to then create an algorithm or ‘recipe’ for what we should be doing during the operation to create the best conduit (or new oesophagus) that we can – how wide, the best shape, the best blood supply – to optimise the situation so patients have the best quality of life,” Wendy said.

“We’re very grateful for the opportunity to do this research. It’s hard to get people interested in oesophageal cancer. People like Suz, with her passion, are priceless. It’s the typical Aussie spirit, fighting for the underdog!” she said.

“She’s an inspirational young woman who’s taken it upon herself to take tragedy and turn it into something really positive for the community.”

The Aftershock is a small organisation aiming to “make a big bang” by concentrating on a few research projects, initially work by the CCS’s Associate Professor James Lee into thyroid cancer, then Professor Meng Law’s group investigating the deadly brain cancer glioblastoma, and now oesophageal cancer.

Its other aim is to raise awareness of high mortality rate diseases through events such as Teresa’s Trotters, an annual six-kilometre walk (Teresa used to walk that far daily) and a podcast in which Wendy participated.

“I wanted to do anything I could to support the charity not just for my own research but because I think that rare cancers are forgotten cancers, and people with these cancers should have the same opportunities as those with more recognised cancers,” Wendy said.

In 2019, Suzanne spent a day with Wendy at The Alfred, observing an oesophagectomy – “a real eye-opener” – meeting her team and talking to some of Wendy’s patients. The Aftershock staged an exhibition later featuring 16 stories about those affected by cancer, among them patients, family members, oncologists and surgeons.

“Wendy’s been a great supporter, and a really big part of The Aftershock for the last couple of years,” Suzanne said.
 
“It makes it so rewarding to close the loop between donors and researchers and clinicians because we’re all working together for the good of our patients, which is a really satisfying feeling,” Wendy said.