Support Groups

NeuroEndocrine Cancer Australia has established patient support groups across Australia, as well as two active Facebook Private Discussion Groups and linkages to Cancer Connect program which is one to one peer support.

Being diagnosed with Neuroendocrine Cancer or sometimes called NETs, can be even more confusing and daunting due to the lack of information and support readily available.

Support groups can be a wonderful way of getting local knowledge, as well as being a fantastic way to connect and share experiences with others.

Finding a Support Group

Join online or state-based in person support groups to connect with others who understand a neuroendocrine cancer diagnosis.

Facebook Support Groups

Our private, moderated Facebook groups offer a flexible way to connect online with others living with neuroendocrine cancer. These groups provide peer support, shared experiences, and community connection, whether you’re newly diagnosed or further along your journey.

Enrol in our "Living with NETs" program.

To further support patients and carers, our “Living with NETs” online education program is available to register to attend.

This is a free, nurse-led program designed to help you better understand neuroendocrine cancer, treatment options, manage side effects, and navigate life with neuroendocrine cancer.

Peer Support via Phone

NECA can also link those recently diagnosed with neuroendocrine cancer with trained Peer Support Volunteers, via phone, through the Cancer Council’s Cancer Connect Program.

These volunteers are people who have had neuroendocrine cancer (many of them for several years), who have undergone careful selection and training via the Cancer Council. This is a free, confidential service.

To learn more about this service, click the button below.

Patient Stories

Alison Danis

Gastric

My name is Ali and I live in rural/remote SA. Surgeons discovered I had NETs when they were operating on my re-occurring bowel cancer in 2017. A PET scan followed and they found an inoperable NET tumour in my small bowel (primary is unknown).

Allison, W.A.

Small Bowel

This experience has made me a firm believer in screening, early diagnosis, and specialist NET care. I feel incredibly lucky — and grateful — that my NET was found at such an early, treatable stage.

Amanda Massey, QLD

Pancreatic

Honestly, pre-NETs now seems like another life for me. The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.

Amanda, QLD

Appendix

For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.

Amelia, QLD

Pancreatic|Pheochromocytoma|Von Hippel-Lindau Syndrome (VHL)

Von Hippel-Lindau was explained. Genetic testing was sent to Western Australia. My mum Toni, 2 sisters and I all had VHL. I have two children, both Boys. They both have VHL, Belzutifan could change their future

Amy, NSW

Large Bowel

I was diagnosed with NEC high grade small cell neuroendocrine carcinoma in a duplication cyst of my colon. I was born with a duplicate colon I never knew about and my cancer was found within it.

Angela, ACT

Pheochromocytoma

My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance.

Ann, VIC

Pancreatic

If you are recently diagnosed with Carcinoid Cancer your shock, dismay, stress, and anxiety level does not change, but you learn to deal with it as time passes. It is worth noting how things HAVE changed and improved over the years.

Ashley, W.A.

Pancreatic|Von Hippel-Lindau Syndrome (VHL)

I was diagnosed with Von Hippel-Lindau Syndrome (VHL) in 2016, I am classified as de novo or a mosaic as I am the first in my line having VHL, both of my parents have been tested and neither have the mutation in the Chromosome 3p25.3.

Birgitte, South Australia

Large Bowel

I have fully recovered from the surgery and I’m feeling terrific, and I hardly think about my NET. I am extremely grateful for the early diagnosis.

Your NET Care

Understanding NETs

Support & Resources