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30 Nov 2018 at 12:00AM


Asia Pacific Neuroendocrine Tumor Society (APNETs) November 9-11 – by Simone Leyden

It was a great honour to play host to the 6th annual Asia Pacific Neuroendocrine Tumour Society (APNETs) meeting in Melbourne in November at the Melbourne Exhibition and Convention Centre (9th – 11th). APNETs, founded in 2013 by a group of healthcare professionals who recognized the need for the creation of a regional society dedicated to enhancing the care of patients with neuroendocrine tumours.

With close to 200 registrants representing over 19 countries, APNETS 2018 will go a long way in spreading and integrating NET research amongst the Asia-Pacific Region and beyond.

This year’s scientific program bought together experts from around the world in all disciplines of NET patient care, who presented the most up to date research, clinical trials, guidelines, treatment options and diagnostics. It was unique that every one of the invited speakers accepted our invitation, and we are so grateful to the experts who shared their knowledge over the three days, finishing with the patient symposium. We were happy to have leading experts including Prof Dermot O’Toole the Chair of the European Neuroendocrine Tumor Society (ENETs), the President of APNETs Dr Harjit Singh, Dr Anita Borges (India), Dr Ben Lawrence (New Zealand), Prof James Yao (USA), Prof Halfden Sorbye (Norway), Prof Anthony Gill AM (Australia) and Dr Simona Glasberg (Israel), to name but a few. Below is a snapshot of the program and what was presented with more details and published abstracts attached for review.

World NET Cancer Day on Saturday November 10 (the second day of the meeting) started with an early walk, “NETwalk”, organised in conjunction with our Gold sponsor Novartis. It was great to see so many of the attendees of APNETs as well as patients and families join in for a leisurely walk around Melbourne, a great way to start day two and World NET cancer Day.

As well as a program filled with the latest research and clinical trials in NETs, we also enjoyed a history lesson during the IPSEN breakfast session with “N.E.T – Connecting the last 110 years”. The interactive panel of NETs”.

Special thanks to Prof Rod Hicks and Dr Grace Kong of Peter MacCallum Cancer Centre, who did an exemplary job with the scientific program. Their dedication is second to none and worked tirelessly to bring the program together. Thanks also to the team at ASN Events lead by Jim Fawcett who once again pulled together the event with ease and commitment.

We would not have been able to hold the meeting without the commitment of our sponsors, thank you to our gold sponsor Novartis, Bronze Sponsors IPSEN, TELIX, CYCLOTEK, supporters AAA, Clarity, Compete ITM, and exhibitors ANSTO, IDB, Imaxeon, Iphase, and Merck. It is exciting to see the interest in the NET space and we look forward to working with our partners in future research.

APNETs above all, was an incredible opportunity to network, share ideas and motivate as we all strive to improve NET patient outcomes. We look forward to the many projects inspired by the meeting and working together further in the future.

Day One – Why Should I Suspect NETs?

Prof James Yao (MD Anderson Cancer Centre, United States)

An update on the evolving epidemiology, biology and prognosis of neuroendocrine neoplasms

Although much have been learned about the biology and natural history of neuroendocrine neoplasms over the past two decades, our understanding of these topics is still evolving due to continuing improvements in molecular diagnostics and therapeutics. Our recent analyses using Surveillance, Epidemiology, and End Results (SEER) registry data showed the incidence and prevalence of neuroendocrine tumors are continuing to rise (Dasari et al, JAMA Oncology 2017).

Dr Simona Glasberg (Hadassah-Hebrew University Medical Centre, Israel)

Endocrine Features of NETs

The natural history of patients with neuroendocrine neoplasms (NENs) is characterized by pronounced interpatient heterogeneity. This clinical variability reflects the diverse biology of NENs that show a wide spectrum of cell differentiation, proliferation, and invasiveness. A major determinant of the clinical course is attributed to the increased production and secretion of a multitude of neuropeptides and amines that cause distinct clinical syndromes. Over-secretion of a single hormone (functioning tumor) or absence of any hormonal over-secretion (non-functioning tumor) are the two most common clinical scenarios observed in NENs patients with sporadic disease.

Day One – Diagnosis of NETs

Prof Michael Hofman (Peter MacCallum Cancer Centre, Australia)

Molecular imaging in diagnosis and treatment planning

Molecular imaging is changing diagnostic and treatment paradigms in patients with neuroendocrine tumors through its ability to non-invasively characterize disease, supplementing the traditional role of using imaging for localizing and measuring disease. For patients with metastatic disease, there is an increasing range of therapies but these must be individualized to the specific subtype of tumor expressed, which varies in aggressiveness from well to poorly differentiated phenotypes. Positron emission tomography (PET) is now able to characterize these subtypes through its ability to quantify somatostatin receptor cell surface (SSTR) expression and glycolytic metabolism with SSTR and fluorodeoxyglucose (FDG) PET, respectively.

Day One – What patients want to know?

Prof Michael Jefford (Peter MacCallum Cancer Centre, Australia)

Survivorship considerations for people with NETs

There is little literature that specifically deals with the concerns and issues experienced by people living with and beyond a diagnosis of NET (that is, survivors). Limited extant data suggests that NET survivors experience many issues that are similar to other survivor groups, including physical concerns, such as fatigue and pain; emotional issues, such as fear of cancer spreading, uncertainty about the future, and depression; altered relationships; financial concerns; role and lifestyle changes, and changes in work. They may also experience unique symptom issues, including diarrhoea, cramping and breathlessness. These issues need to be identified and appropriately managed. Survivors frequently encounter inexperienced health care professionals and poor communication between providers, resulting in suboptimal care. As with other survivor groups, consideration should be given to models of care that may not be medically led or face-to-face. These might include greater use of nurse-led review and better integration with primary care, as well the use of phone and internet-based reviews, and remote monitoring. Many providers (including primary care practitioners) likely lack the information and guidance necessary to adequately care for survivors. Preliminary data suggests that NET survivors value survivorship care plans (SCPs). SCPs have been endorsed internationally. They include a summary of diagnosis and treatments, recommended follow up, and strategies to remain well.

Dr Erin Kennedy (Peter MacCallum Cancer Centre, Australia)

Nutritional aspects, including short gut syndrome

The pathophysiology of neuroendocrine tumours and their treatment can cause various symptoms with the potential to impact on nutritional factors such as vitamin synthesis and absorption, dietary habits, weight change and appetite. Patients with serotonin producing NETs and those on somatostatin analogue treatment are a risk of malabsorption syndromes, leading to potential deficiency in fat-soluble vitamins and niacin. Bowel resection leads to additional risk of malabsorption and malnutrition. Malnutrition and dietary modification is prevalent in NET patients, with up to 40-90% of patients reporting food intolerances or changing their diet to manage symptoms. Recent research has indicated that up to 38% of NET patients are at nutritional risk. Diarrhoea, flushing, abdominal pain and bloating are symptoms commonly misdiagnosed in NET patients, and have a significant impact on patients’ quality of life. Common nutrition issues reported by NET patients will be discussed, as well as recommendations for suitable screening and management practices.

We look forward to attending and contributing more to the important work of the global NET medical societies, and grateful to the partnership between patient advocates and medical experts as we all strive for better outcomes for NET patients.

Category: Advocacy