Adelaide NET Patient Education Forum

Our final NET Patient Forum for 2019 was held at SAHMRI at Adelaide University on Thursday, 14 November 2019. This was very well attended by more than 40 patients, carers and health professionals. The forum was also videoed for those who could not attend, and will be available on YouTube soon.

The forum commenced with Prof Tim Price (Queen Elizabeth Hospital) giving an overview of NETs and an update on Medical Management of NETS.  This was very comprehensive and explained the diversity of treatments now available.

The next speaker was Dr Gabby Cehic. Gabby, who, despite having technical difficulties with the PowerPoint presentation, delivered a very informative and engaging update on Nuclear Management of NETs.

Simone Leyden (CEO Unicorn Foundation) provided an update on what is happening at the Unicorn Foundation and projects – current and future. During her presentation Simone spoke about the PLANET Registry and the App, which is hoped to be rolled out at Queen Elizabeth Hospital in the very near future (early 2020.) To date the registry is active at Peter MacCallum (VIC) and Royal North Shore (NSW) is about to distribute unique codes for patients to access the app. The other sites, Fiona Stanley Hospital (WA) and Royal Brisbane and Women’s Hospital (QLD) will be active early 2020.

Holly Evans emphasized the importance of Exercise Physiology for NET patients and maintaining a good quality of life in the next presentation. Holly highlighted potential research which could be done and we are keen to look at ways this can be achieved collaboratively.

Polly Baldwin from Cancer Council SA spoke about the resources and information the Cancer Council   provides to the Forum attendees.  Kate Wakelin was the final speaker and presented information about diet and living well with NETS.

We then opened the floor for Questions and Answers from the attendees. There were questions around current trials being conducted and also information requested about the use of Medicinal Cannabis. As much of the prescribing to date of Medicinal Cannabis has been via Clinical Trials, there was good discussion about the indications and criteria for use. There were general questions asked about treatments and options and also about the use of the patient app.

We are very grateful to the Cancer Council SA for providing the refreshment prior to the forum. The venue and the catering were fabulous. We are also very grateful to Jackie Barreau and Kathy Hatzi for their assistance with the evening – especially Jackie’s photography expertise.

Report by Meredith Cummins (Unicorn Foundation – Project Officer)


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