Endocrine Neoplasia / Tumour Genetics

ADULT
  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • No emergency indicators identified; routine prioritisation applies
Minimum Referral Criteria
Category 1
(appointment within 30 calendar days)
  • Medullary thyroid cancer diagnosed at any age
  • Adrenocortical carcinoma diagnosed at any age
  • Metastatic phaeochromocytoma or paraganglioma diagnosed at any age
  • Metastatic parathyroid carcinoma diagnosed at any age
  • Metastatic gastroduodenopancreatic neuroendocrine tumour (GDP-NET)
Category 2
(appointment within 90 calendar days)
  • A patient who fulfils Category 3 criteria and has a limited life expectancy due to advanced age and/or comorbidities
  • An individual whose referral to GHQ was recommended after review of a relative.
  • Primary hyperparathyroidism diagnosed at age ≤ 40 years in a patient who has not yet undergone parathyroid surgery.
  • Personal history of hypercalcaemia where the results of genetic testing will influence treatment (e.g. distinguish between FHH and familial hyperparathyroidism when the results of serum/urine testing and specialist endocrinology review are inconclusive)
Category 3
(appointment within 365 calendar days)

Pheochromocytoma/paraganglioma

  • Unilateral pheochromocytoma diagnosed at age ≤ 50 years
  • Bilateral pheochromocytoma (regardless of age)
  • Paraganglioma (regardless of age)
  • Unilateral pheochromocytoma with at least one of the following (regardless of age):
    • abnormal SDHB and/or SDHA immunohistochemistry
    • multifocal
    • family history of pheochromocytoma, paraganglioma or kidney cancer
    • also has one or more paraganglioma
    • also has renal cancer
    • another feature of VHL disease
    • features of neurofibromatosis type 1

Other adrenal tumours

  • Primary pigmented nodular adrenocortical disease (PPNAD)

Gastroenteropancreatic neuroendocrine tumour (GDP-NET)

  • Gastrinoma (gastrin secreting GDP-NET) regardless of age
  • GDP-NET with clear cell histology (regardless of age)
  • GDP-NET with at least one of the following:
    • diagnosed at age ≤ 40 years
    • multifocal
    • family history of GDP-NET, or multi-gland parathyroid adenoma/hyperplasia or pituitary adenoma (excluding micro-prolactinoma in an adult)
    • another feature of MEN1 disease

Pituitary tumour

  • Pituitary adenoma diagnosed at age ≤ 20 years regardless of adenoma size
  • Pituitary macro-adenoma diagnosed at age ≤ 30 years (over 10mm)
  • Growth hormone secreting pituitary adenoma with the phenotype of gigantism
  • Family history of pituitary adenoma, or GEP-NET or multi-gland parathyroid adenoma/hyperplasia

Thyroid tumour or cancer

  • Cribriform-morula form of thyroid cancer (regardless of age)
  • Epithelial thyroid cancer (follicular or papillary) and other features of Cowden syndrome

Multiple endocrine tumours

  • Two or more endocrine tumours in a single individual at any age (excluding non-medullary thyroid cancer and microprolactinoma in an adult)

Parathyroid tumour

  • Parathyroid adenoma/hyperplasia diagnosed at age ≤ 40 years
  • Parathyroid adenoma/hyperplasia with at least one of the following (regardless of age):
    • multi-gland adenoma or hyperplasia (in the absence of chronic renal failure)
    • abnormal parafibromin immunohistochemistry
    • family history of multi-gland parathyroid adenoma/hyperplasia, or GEP-NET, or pituitary adenoma (excluding micro-prolactinoma in an adult)
    • another feature of MEN1 disease
    • jaw tumours (ossifying fibromas of the mandible or maxilla)
  • Familial hyperparathyroidism
  • Parathyroid carcinoma

Please insert the below information and minimum referral criteria into referral

1. Reason for request Indicate on the referral

  • To establish a diagnosis
  • For treatment or intervention
  • For advice and management
  • For specialist to take over management
  • Reassurance for GP/second opinion
  • For a specified test/investigation the GP can't order, or the patient can't afford or access
  • Reassurance for the patient/family
  • For other reason (e.g. rapidly accelerating disease progression)
  • Clinical judgement indicates a referral for specialist review is necessary

2. Essential referral information Referral will be returned without this

  • For other reason (e.g. rapidly accelerating disease progression) As much detail as possible about the patient’s personal history of cancer including the following:
    • type/s of cancer
    • age at diagnosis
    • treatment including outcome
    • known details of relevant family history
  • Relevant pathology including results of any genetic testing if performed
  • If referral is from a specialist, provide immunohistochemistry for SDHA, SDHB or parafibromin if relevant (if results are available on Auslab please indicate this on referral)
  • Relevant imaging

3. Additional referral information Useful for processing the referral

  • No additional referral information

4. Request

  • Patient's Demographic Details

    • Full name (including aliases)
    • Date of birth
    • Residential and postal address
    • Telephone contact number/s – home, mobile and alternative
    • Medicare number (where eligible)
    • Name of the parent or caregiver (if appropriate)
    • Preferred language and interpreter requirements
    • Identifies as Aboriginal and/or Torres Strait Islander

    Referring Practitioner Details

    • Full name
    • Full address
    • Contact details – telephone, fax, email
    • Provider number
    • Date of referral
    • Signature

    Relevant clinical information about the condition

    • Presenting symptoms (evolution and duration)
    • Physical findings
    • Details of previous treatment (including systemic and topical medications prescribed) including the course and outcome of the treatment
    • Body mass index (BMI)
    • Details of any associated medical conditions which may affect the condition or its treatment (e.g. diabetes), noting these must be stable and controlled prior to referral
    • Current medications and dosages
    • Drug allergies
    • Alcohol, tobacco and other drugs use

    Reason for request

    • To establish a diagnosis
    • For treatment or intervention
    • For advice and management
    • For specialist to take over management
    • Reassurance for GP/second opinion
    • For a specified test/investigation the GP can't order, or the patient can't afford or access
    • Reassurance for the patient/family
    • For other reason (e.g. rapidly accelerating disease progression)
    • Clinical judgement indicates a referral for specialist review is necessary

    Clinical modifiers

    • Impact on employment
    • Impact on education
    • Impact on home
    • Impact on activities of daily living
    • Impact on ability to care for others
    • Impact on personal frailty or safety
    • Identifies as Aboriginal and/or Torres Strait Islander

    Other relevant information

    • Willingness to have surgery (where surgery is a likely intervention)
    • Choice to be treated as a public or private patient
    • Compensable status (e.g. DVA, Work Cover, Motor Vehicle Insurance, etc.)
  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • Please note that where appropriate and where available, the referral may be streamed to an associated public allied health and/or nursing service.  Access to some specific services may include initial assessment and management by associated public allied health and/or nursing, which may either facilitate or negate the need to see the public medical specialist.
    • A change in patient circumstance (such as condition deteriorating or becoming pregnant) may affect the urgency categorisation and should be communicated as soon as possible.
    • Please indicate in the referral if the patient is unable to access mandatory tests or investigations as they incur a cost or are unavailable locally.

Last updated: 2 December 2024

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