STEP 2: Presentation, initial investigations and referral

This step outlines the process for the general practitioner to initiate the right investigations and refer to the appropriate specialist in a timely manner. The types of investigations the general practitioner undertakes will depend on many factors, including access to diagnostic tests, the availability of medical specialists and patient preferences.

The following signs and symptoms for NETs are not specific, but where persistent or suspicious further investigation could be warranted:

  • abdominal pain
  • bloating
  • repeated dry flushing on the face and neck
  • diarrhoea, even while not eating
  • wheezing/bronchoconstriction (asthma-like symptoms)
  • episodes of hypotension or palpitations
  • unexplained right-sided heart disease
  • unexplained weight loss
  • fatigue.

For gastrointestinal NETs, more specific symptoms for the NET location are:

  • watery diarrhoea
  • cramping
  • intermittent abdominal pain
  • flushing
  • asthma-like wheezing
  • bowel obstruction
  • flushing, diarrhoea and dyspnoea – classic triad symptoms are seen in less than 20 per cent of cases.

For pancreatic NETs, more specific symptoms for the NET location are:

  • epigastric or back pain
  • peptic ulcer disease
  • diarrhoea
  • intermittent hypoglycemic episodes (low blood sugar)
  • diabetes
  • rash.

For lung NETs, more specific symptoms for the NET location are:

  • wheezing
  • cough
  • dyspnoea
  • haemoptysis
  • recurrent chest infections/pneumonia.

For paragangliomas and phaeochromocytomas, more specific symptoms for the NET location are:

  • hypertension, often paroxysmal
  • headache
  • heavy sweating for no known reason
  • a strong, fast or irregular heartbeat
  • tremor
  • pallor.

The presence of multiple signs and symptoms indicates an increased risk of NETs.

Presenting symptoms should be promptly and clinically triaged by a general practitioner.

General practitioner examinations and investigations should include:

  • taking of a medical history and a physical examination
  • full blood count, B12 and serum iron, liver function tests (LFTs) and renal function, thyroid function, calcium, cholesterol and C-reactive protein (CRP)
  • imaging tests, such as ultrasound, chest x-ray (CXR), computed tomography (CT) scans
  • referral for endoscopy/colonoscopy or bronchoscopy depending on imaging result.
  • Tumour markers – for example, chromogranin A and 24-hour urinary 5HIAA – should be used with caution in the pre-diagnosis stage given the number of common false positives (e.g. chromogranin A may be falsely elevated in the context of proton pump inhibitor usage or renal failure).

See table 1 for specific investigations for the NET location.

Where this is a strong suspicion of NETs, investigations should be conducted within two weeks of the initial general practitioner appointment.
Investigations could be sequential. The appropriate sequence of investigations may vary. When in doubt, formal specialist consultation is advised.

If the cancer diagnosis is confirmed or the results are inconsistent or indeterminate, the general practitioner must refer the patient to an appropriate specialist (e.g. medical oncologist, gastroenterologist or respiratory physician) to make the diagnosis.

Patients should be enabled to make informed decisions about their choice of specialist and health service. General practitioners should make referrals in consultation with the patient after considering the clinical care needed, cost implications (see referral options and informed financial consent on page 9), waiting periods, location and facilities, including discussing the patient’s preference for health care through the public or the private system.

Referral for suspected or diagnosed NETs should include the following essential information to accurately triage and categorise the level of clinical urgency:

  • important psychosocial history and relevant medical history
  • family history, current symptoms, medications and allergies
  • results of current clinical investigations (imaging and pathology reports)
  • results of all prior relevant investigations
  • notification if an interpreter service is required.

Many services will reject incomplete referrals, so it is important that referrals comply with all relevant health service criteria.

If access is via online referral, a lack of a hard copy should not delay referral.

The specialist should provide timely communication to the general practitioner about the consultation and should notify the general practitioner if the patient does not attend appointments.

Aboriginal and Torres Strait Islander patients will need a culturally appropriate referral. To view the optimal care pathway for Aboriginal and Torres Strait Islander people with cancer and the corresponding quick reference guide, visit the Cancer Australia website.

Download the consumer resources – Checking for cancer and Cancer from the Cancer Australia website.

All patients with a suspected or proven NET should be referred to an appropriate specialist within one week of completing initial investigations.

The patient’s general practitioner should consider an individualised supportive care assessment where appropriate to identify the needs of an individual, their carer and family. Refer to appropriate support services as required. See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific needs may arise for patients at this time:

  • assistance for dealing with the emotional distress and/or anger of dealing with a potential cancer diagnosis, anxiety/depression, interpersonal problems and adjustment difficulties
  • management of physical symptoms such as diarrhoea
  • monitoring needs for appropriate dietary support such as anti-diarrhoeal medication
  • encouragement and support to increase levels of exercise (Cormie et al. 2018; Hayes et al. 2019).

For more information refer to the National Institute for Health and Care Excellence 2015 guidelines, Suspected cancer: recognition and referral 

For additional information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

The general practitioner is responsible for:

  • providing patients with information that clearly describes to whom they are being referred, the reason for referral and the expected timeframes for appointments
  • requesting that patients notify them if the specialist has not been in contact within the expected timeframe
  • considering referral options for patients living rurally or remotely
  • supporting the patient while waiting for the specialist appointment. NeuroEndocrine Cancer Australia NET Nurse support line 1300 287 363 or support online <> and Cancer Council nurses (via 13 11 20) are available to act as a point of information and reassurance during the anxious period of awaiting further diagnostic information.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.