Patient-centred outcomes: beyond survival rates

Driven by his passion for improving quality of life for patients, Matt chairs the STOPNET trial for patients with neuroendocrine tumours, or NETs.

NETs arise from neuroendocrine cells, which are all over the body. These cells coordinate the activity of various organs, including in the digestive system. Gastro–intestinal NETs tend to be slower to grow than other GI cancers. This means that, while an estimated 5,437 people were diagnosed last year in Australia, the number of people currently living with NETs is likely to be two times as high.

Our STOPNET trial aims to understand whether monthly injections are necessary for patients with NETs after they have undergone radiation therapy.

“These injections are given once a month, and they’re usually given long-term,” Matt says.

“The problem is, after someone undergoes successful radiation treatment, we don’t know whether they need to be continued or not.”

Since patients with NETs need to attend cancer centres in person for their appointments, many are forced to plan their lives around it. They must be able to travel to a cancer centre that offers the treatment, no matter how far the closest centre is. They must also be able to take time off for the appointment, travel and recovery from the potential side effects.

Jennifer, one of Matt’s patients, experienced mood-related side effects. “I’d have the treatment on the Monday and I could bet that on the Thursday I’d feel like crap,” she says.

It also made her feel as if she was solely ‘the sick patient’ – nothing like the jet-setting, travel-loving woman that she truly was.

At the GI Cancer Institute, we believe that better outcomes for people with GI cancer means more than survival rates. Our STOPNET trial could free patients from unnecessary appointments, giving them back significant time, resources and energy that they would otherwise spend.

“If it gives people agency over their own life, then you’re giving back something that they thought was going to be taken away from them,” Jennifer says.

Thanks to the generosity of donors like you, we’ve made significant progress on STOPNET. With your support and a prestigious $50,000 grant, we have more than 70% of the funding needed to open this trial.

“I want to thank everyone in the GI cancer community for supporting STOPNET,” says Matt.

“If we’re successful, it will make a real difference to the lives of patients with NETs. Thank you very much.”

Exciting STOPNET news!

  • Travel costs will be covered for STOPNET’s rural and remote patients
  • STOPNET will soon be available as a teletrial
  • STOPNET is gaining interest overseas and will open internationally

This article was featured in The Digest, Issue 3, 2023.

Get our feature articles delivered to your inbox for free