Brisbane NET Patient Forum

(report by Meredith Cummins – NSW Project Officer)

On Tuesday 27 August a NET Patient Forum was held in the evening at the Cancer Council’s Auditorium in Fortitude Valley. We had a wonderful attendance for this Forum with approximately 80 registered for the event. Looking around the auditorium it was wonderful to see most seats filled – from the previous forum 2 years ago the attendance had doubled. We may need to look for a bigger venue in 2 years.

The guest speakers for the evening covered a diverse range of topics about Neuroendocrine Tumours. The first speaker was A/Prof David Wyld (Medical Oncologist) who gave an overview of the incidence of NET internationally, nationally and locally in Queensland.  A/Prof David Pattison (Nuclear Medicine Specialist and Endocrinologist) then spoke about current treatment with PRRT (Peptide Receptor Radionuclide Therapy).  The next speaker was Dr Amanda Love (Endocrinologist) who discussed Hereditary Syndromes which included Pheochromocytoma, Paraganglioma and MEN (Multiple Endocrine Neoplasias).  We then had Prof Jane Turner (Psychiatrist) speak about the Psychological Impact of Living with NETs – the roller coaster experience for patients and significant others, detailing coping mechanisms and seeking help in dealing with this. Rebecca Fichera (Dietitian) provided a very comprehensive presentation about diet, vitamin deficiencies and malabsorption issue. 

We then opened the floor up for a Question and Answer session with the panel of speakers including Louise Gordon, a Health Economist, who provided an update of the results from the Financial Toxicity study. Many questions were asked of the panel which was very beneficial for the attendees as some questions were asked which many had not thought to ask.

We then finalized the evening with an update on the Unicorn Foundations activities by Kate Wakelin and Cancer Council Queensland’s services by Carien Rees, Manager CCQld.

The feedback from the attendees has been very positive and we are so pleased to have been able to organize a successful evening in Brisbane. We have had the event filmed so this will soon be available on the Unicorn Foundation YouTube channel for all to watch. 

A huge thank you to Cancer Council Queensland, for enabling us to use the Auditorium for the Forum. 

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