Neuroendocrine tumours (NET)

Neuroendocrine tumours develop in the neuroendocrine system. This system is made up of nerve (neuro) and hormone (endocrine) cells. It is responsible for producing hormones and other chemicals that control normal body functions

Neuroendocrine tumours can occur anywhere in the body but particularly the small intestine, pancreas, lungs, appendix, and rectum. 

Victorian Cancer Registry data indicates there were more than 8000 Victorian patients with neuroendocrine cancers from 1982 to 2019, and the incidence is rising. 

The PeterMac NET Service is the leading site in Australia and the Southern Hemisphere for the treatment of these complex tumours, and it sees patients primarily from across the country as well as New Zealand and South East Asia.  

It was the first outside of Europe to be granted “Neuroendocrine Cancer Centre of Excellence” status from the European Neuroendocrine Tumour Society (ENETS).  

The NET Service is currently co-chaired by Professor Michael and Associate Professor Grace Kong, and it recently appointed a NET Unit Clinical Nurse Consultant in Kate Wakelin and Centre of Excellence coordinator Wing Fai Nip. 

The NET Service is composed of a multidisciplinary team of NET experts from both Peter Mac and the Royal Melbourne Hospital. All the members of the team have extensive experience of managing people with NETs including all aspects of diagnosis, treatment, supportive care and community outreach. Alongside this central focus on patient care is a strong commitment to education and research. 

Depending on your presentation and diagnosis, you will be seen by the NET Clinical Nurse Consultant, alongside a single specialist or a number of specialists. This may include a surgeon, medical oncologist, radiation oncologist, nuclear medicine specialist, endocrinologist, or another specialty. The patient navigator will help manage appointments and will be the first port of call regarding ongoing appointments etc. 

Your specialist may arrange a number of investigations including scans, blood and urine tests, as well as obtaining reports of prior investigations. Your case will often be discussed at a multidisciplinary team meeting, with all the specialist team present, including radiologists and pathologists, in order to generate a personalised management plan. You will then be reviewed in the multidisciplinary clinic by all the required specialists. 

The team is here to support you through your diagnosis and treatment(s) and help you make informed decisions about your care.  

Referrals 

We understand how stressful and difficult cancer can be. 

Your team of experts are sensitive to your individual health and wellbeing needs – we are here to help.  

You will need a referral from your GP or medical practitioner to access this service. 

Find out more about Getting started at Peter Mac

Neuroendocrine tumours: patient information and support

NeuroEndocrine Cancer Australia 

NeuroEndocrine Cancer Australia is the only Australian not-for-profit medical charity providing specialised support to people living with NETs. They focus on patient support, education, research, awareness and advocacy.

Their NET Nurse Support service is available -

  • Phone: 1300 287 363
  • Email: This email address is being protected from spambots. You need JavaScript enabled to view it..

For more information, visit NeuroEdocrine Cancer Australia.

Cancer Council 

The Cancer Council in your state provides information and support for cancer patients. Cancer Council’s 13 11 20 phone service is open Monday to Friday, 9 am to 5 pm, and staffed by experienced cancer nurses who can support those affected by cancer, their carers and loved ones by providing emotional and practical support. 

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