Patient Support Groups and Coronavirus (COVID-19)

IMPORTANT ANNOUNCEMENT

Patient Support Groups are temporarily moving online

Based on the recent announcements from the World Health Organisation (WHO) and the regulating health and government bodies within Australia regarding COVID-19 we will be moving all patient support groups to an online video format (details to follow).

This decision has been made with the health and well-being of our patients, volunteers and staff at the forefront of our minds. Currently this change only applies to support groups scheduled through March and April.

We are regularly monitoring the most up-to-date information provided by the Australian Government and will be in touch with more information regarding future patient support groups scheduled in throughout May 2020 and beyond.

To ensure that our patient support groups remain private and we maintain a safe space for you to discuss your experiences we will be emailing login details and instructions to current support group members. 

Any patients who do not currently attend support groups, but would like access to this temporary online service please register your interest via our online form and our NET Nurse will get in contact with you.

Patient Support Groups Moving Online:

April 

  • St George Hospital, NSW ( 6th April, 2020)
  • Brisbane, QLD  (7th April, 2020)
  • Adelaide, SA (7th April, 2020)
  • Royal North Shore, NSW (8th April, 2020)
  • Coffs Harbour Health Campus, NSW (8th April, 2020)
  • Melbourne, NSW (14th April, 2020)
  • Canberra, ACT (17th April, 2020)
  • Gold Coast, QLD (17th April, 2020)


May

  • Hobart, TAS (5th May, 2020)
  • Sydney Adventist Hospital, NSW (21st May, 2020)
  • Canberra, ACT (22nd May, 2020)
  • Dubbo, NSW (23rd May, 2020)


June

  • Brisbane, QLD (2nd June, 2020)
  • Adelaide, SA (2nd June, 2020)
  • Murdoch, WA (3rd June, 2020)
  • Kew, VIC (9th June, 2020)
  • North Shore Hospital, NSW (10th June, 2020)
  • Coffs Harbour, NSW (10th June, 2020)
  • St George Hospital, NSW (11th June, 2020)
  • Gold Coast, QLD (12th June, 2020)
  • Sandy Bay, TAS (16th June, 2020)
  • Canberra, ACT (19th June, 2020)
  • Warrnambool, VIC (30th June, 2020)

Please click on your state in the map below to view any group changes.

NeuroEndocrine Cancer Australia has established patient support groups across Australia, as well as two active Facebook Private Discussion Groups and linkages to Cancer Council Telephone Support Groups.

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

Support groups can be a wonderful way of getting local knowledge about the doctors and system more generally, as well as being a fantastic way to connect with others who have travelled a similar path.

Find a Support Group

Click on the relevant state to locate your closest face-to-face support group.

Facebook Support Groups

We also have two Private Groups on Facebook, which is another way of connecting with others affected by NETs.

These are private groups, meaning Facebook friends can’t see who is in the group, or anything you post in the group space.

Our main Private Discussion Group can be found here, and our Private NET Carers group here (once you click on “Join Group”, you will be guided to answer three questions, so your membership can be approved).

Peer Support via Phone

We can also link those recently diagnosed with NETs with trained Peer Support Volunteers, via phone, through the Cancer Council’s Cancer Connect Program. These volunteers are people who have had NETs (many of them for several years), who have undergone careful selection and training via the Cancer Council. This is a free, confidential service.

To link up with a volunteer, please contact our NET Nurse.

Click here to find out more about Telephone Support Groups for those with Advanced Cancer and for Carers.

New South Wales and ACT

North Shore Private Hospital

Dates/Times – 2020  
Wednesday 5th February, 5pm – 7pm
Wednesday 8th April, 5pm – 7pm:  ONLINE
Wednesday 10th June, 5pm – 7pm: ONLINE
Wednesday 12th August, 5pm – 7pm
Wednesday 14th October, 5pm – 7pm
Wednesday 2nd December, 5pm – 7pm

Location
North Shore Private Hospital
Ground Floor Conference Room
Westbourne Street
St Leonards

Sydney Adventist Hospital (SAN)

Dates/Times 2020
Thursday 16th January, 1.30pm – 3.00pm
Thursday 19th March, 1.30pm – 3.00pm: ONLINE 
Thursday 21st May, 1.30pm – 3.00pm ONLINE
Thursday 23rd July, 1.30pm – 3.00pm
Thursday 17th September, 1.30 – 3.00pm
Thursday 19th November, 1.30 – 3.00pm

Location
Cancer Support Centre
Jacaranda Lodge
SAN -185 Fox Valley Rd, Wahroonga NSW 2076

St George Hospital

Dates/Times – 2020
Thursday 6th February, 2pm – 4pm – Function Room
Monday 6th April, 2pm – 4pm – Function Room  – Dr Hao-Wen Sim “Update on NET Treatment and Clinical Trials”: ONLINE
Thursday 11th June, 2pm – 4pm: ONLINE
Thursday 20th August, 2pm – 4pm – Seminar Room 3
Thursday 15th October, 2pm – 4pm – Seminar Room 1 & 2
Thursday 3rd December, 2pm – 4pm – Seminar Room 1 & 2

Location
St George Hospital
Ground Floor
Research and Education Centre
South Street
Kogarah
(just beside the car park)

Albury/Wodonga Regional Cancer Centre

Dates/Times – TBA 2020

Due to Covid-19 some of the below times will not run. Please contact our NET Nurse for further info. 
Tuesday 21st April, 16th June, 18th August, 20th October, November Christmas Break Up (TBC)

Location
Contact NET Nurse Kate for venue details (local venue varies)

Coffs Harbour Health Campus

Dates/Times – 2020
Wednesday 12th February, 1pm – 3pm
Wednesday 8th April, 1pm – 3pm: ONLINE
Wednesday 10th June, 1pm – 3pm ONLINE
Wednesday 12th August, 1pm – 3pm
Wednesday 14th October, 1pm – 3pm
Wednesday 9th December, 1pm – 3pm

Location
Shearwater Lodge
Coffs Harbour Health Campus
345 Pacific Highway
Coffs Harbour

Canberra

Dates/Times 2020
Friday 28th February, 10am-12pm
Friday 20th March, 10am – 12pm: ONLINE
Friday 17th April, 10am – 12pm: ONLINE
Friday 22nd May, 10am – 12pm: ONLINE
Friday 19th June, 10am – 12pm: ONLINE

Next 6 months TBC

Location
The Raiders Club,
1 Liardet Street,
Weston, ACT

Dubbo

Dates/Times 2020 TBC
Saturday 22nd Feb
Saturday 23rd May – ONLINE
Saturday 29th August
Saturday 28th November

Location
Contact NET Nurse Kate for venue details

Wagga Wagga

Save the date for NET Patient Forum February 13th – details TBC

Location
Contact NET Nurse Kate for venue details

Contact
NET Nurse
T 1300 CURE NETS (1300 287 363)
E  netnurse@neuroendocrine.org.au

Dates/Times 2020 TBC
Saturday 22nd Feb
Saturday 23rd May
Saturday 29th August
Saturday 28th November

Victoria

Kew (Melbourne)

Dates/Times – 2020  
Tuesday 11th February, 5.30pm – 7.30pm
Tuesday 14th April, 5.30pm – 7.30pm: ONLINE
Tuesday 9th June, 5.30pm – 7.30pm: ONLINE
Tuesday 18th August, 5.30pm – 7.30pm
Tuesday 20th October, 5.30pm – 7.30pm
Tuesday 8th December, 5.30pm – 7.30pm
Wednesday 2nd December, 5pm – 7pm

Location
Phyllis Hore Room, Kew Library
Corner Cotham Road and Civic Drive
Kew

Warrnambool

Dates/Times – 2020 TBC 
Thursday 19th March: ONLINE
Tuesday 30th June: ONLINE
Tuesday 15th September
Thursday 13th December

Location
Contact Kate NET Nurse for venue locations

Queensland

Fortitude Valley (Brisbane)

Dates/Times – 2020  
Tuesday 4th February, 11am – 2pm
Tuesday 7th April, 11am – 2pm: ONLINE
Tuesday 2nd June, 11am – 2pm: ONLINE
Tuesday 4th August, 11am – 2pm
Tuesday 6th October, 11am – 2pm
Tuesday 1st December (Christmas Break Up TBC venue)

Location
Cancer Council QLD
Auditorium
553 Gregory Terrace
Fortitude Valley

Gold Coast

Dates/Times – 2020  
Friday 21st February, 10.00am – 12.00pm
Friday 17th April, 10.00am – 12.00pm: ONLINE
Friday 12th June, 10.00am – 12.00pm: ONLINE

Next 6 months TBC

Location
Cancer Council QLD
1 Short Street
Southport

South Australia

Eastwood (Adelaide)

Dates/Times – 2020  
Tuesday 4th February, 3pm – 5pm
Tuesday 7th April, 3pm – 5pm: ONLINE
Tuesday 9th June, 7pm – 9pm: ONLINE
Tuesday 4th August, 3pm – 5pm
Tuesday 6th October, 3pm – 5pm

December – Christmas Break Up venue TBC

Location
Cancer Council Australia
202 Greenhill Road
Eastwood

Tasmania

Southern Tasmanian Neuroendocrine Tumour Support Group

Dates/Times – 2020  
Tuesday 18th February, 1.30pm – 3.30pm
Tuesday 5th May, 1.30pm – 3.00pm: ONLINE
Tuesday 16th June, 1.30pm – 3.00pm: ONLINE
Tuesday 18th August, 1.30pm – 3.30pm
Tuesday 20th October, 1.30pm – 3.30pm
Tuesday 15th December, 1.30pm – 3.30pm

Location
Cancer Council
15 Princes St
Sandy Bay

Western Australia

Murdoch (WA)

Dates/Times – 2020  
Wednesday 5th February, 6pm – 8pm
Wednesday 1st April, 6pm – 8pm: ONLINE
Wednesday 3rd June, 6pm – 8pm: ONLINE
Wednesday 5th August, 6pm – 8pm
Wednesday 7th October, 6pm – 8pm
Wednesday 2nd December, 6pm – 8pm

Location
Meeting Room G7
Education Building
Fiona Stanley Hospital

Telephone Support Groups

Telephone Support Groups are held twice a month (details below). Referrals or direct enquiries can be made by calling 1300 755 632 or by emailing: tsg@nswcc.org.au 

Name and phone number are required to access this service.

Advanced Cancer TSG
This group is suitable for people with any cancer type that has moved into other organs or areas of the body and is diagnosed as ‘Advanced’, ‘Terminal’ or ‘Metastasised’. For people with NETs, this group may be helpful when their tumours are no longer responding to treatment (as people with ‘Advanced’ NETs can be stable for many years)

Carers TSG
This group is suitable for the primary carer of someone with cancer. The diagnosis can be of any cancer type and the relationship of the carer to the patient could be partner, spouse, parent or (adult) child.