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Urological tumour or cancer: Individual from a family in whom a mutation in a cancer predisposition gene has NOT been identified


Minimum Referral Criteria

  • Category 1
    (appointment within 30 calendar days)
    • Patients that fulfil Category 2 or 3 criteria for renal cell or urothelial cancer, and their cancer is metastatic
    • Hereditary leiomyomatosis and renal cell cancer (HLRCC)- associated renal cell carcinoma, papillary type 2 renal cell carcinoma, fumarate hydratase (FH)-deficient renal carcinoma
    • Anaplastic sarcoma of the kidney
    • Metastatic castrate resistant prostate cancer
  • Category 2
    (appointment within 90 calendar days)
    • Urothelial (transitional cell) carcinoma that is MMR-deficient
    • Personal history of urothelial carcinoma and at least one of the following:
      • a family history of at least one close relative with colorectal or endometrial cancer diagnosed at age < 50 years
      • at least two close relatives with a Lynch syndrome-associated cancer at any age (further information can be found on the GHQ website)
    • An individual whose referral to GHQ was recommended after review of a relative.
    • Tumour testing has identified a potential germline mutation in a familial cancer predisposition gene
  • Category 3
    (appointment within 365 calendar days)
    • A personal history of kidney cancer and one or more close relatives with kidney cancer diagnosed at age < 50 years in smokers, or at any age in non-smokers
    • Multifocal/bilateral renal tumour (benign or malignant) regardless of age
    • Renal cell carcinoma diagnosed at age < 40 years (regardless of histology)
    • Chromophobe renal cancer or renal oncocytoma diagnosed at age < 50 years
    • Hybrid oncocytic/chromophobe renal tumour (regardless of age)
    • Succinate dehydrogenase (SDH)-deficient renal carcinoma (regardless of age)
    • A personal history of kidney cancer and a personal or family history of at least one of the following:
      • fibrofolliculomas
      • trichodiscomas
      • trichilemmomas
      • spontaneous pneumothorax
      • cutaneous leiomyomas
      • multiple uterine fibroids diagnosed at age < 40 years
      • paraganglioma or phaeochromocytoma
      • haemangioblastoma of the retina (retinal angioma) or central nervous system
      • pancreatic neuroendocrine tumour
      • multiple pancreatic cysts
    • Renal angiomyolipoma and personal history of at least one of the following:
      • multiple lesions
      • renal cysts
      • characteristic features of tuberous sclerosis complex
    • Cystic nephroma
    • Prostate cancer

1. Reason for request Indicate on the referral

  • To establish a diagnosis
  • For treatment or intervention not otherwise accessible to the patient
  • For advice regarding management
  • To engage in an ongoing shared care approach between primary and secondary care
  • Reassurance for GP/second opinion
  • Reassurance for the patient/family
  • For other reason (e.g. rapidly accelerating disease progression)

2. Essential referral information Referral will be returned without this

  • As much detail as possible about the patient's personal of cancer including the following:
    • type/s of cancer
    • age at diagnosis
    • treatment including outcome
    • known relevant family history
  • Confirmation of OOHC (where appropriate) and contact details to send correspondence for OOHC
  • Relevant pathology including results of any genetic testing if performed and of immunohistochemistry for SDHA, SDHB and fumarate hydratase if done (if results are available on Auslab please indicate this on referral)
  • Relevant imaging

3. Additional referral information Useful for processing the referral

  • If the family is known to GHQ, include the GHQ reference number (GF) if known
  • Suspected von Hippel Lindau syndrome (VHL): Reports from previous ophthalmology review if done

4. Request

Last updated: 13 June 2023