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Cancer genetics referral guidelines

Making a referral to Medical Genetics is different to making a referral for genetic testing. An assessment by Medical Genetics will require a formal referral to our service. For guidance on who is eligible for a Medical Genetics referral and how to refer, please see below.

ThemeNational Genomic Test Directory (opens in a new tab).

The Directory provides the eligibility criteria for genetic testing within NHS England. Our Medical Genetics service works alongside the East Genomics Laboratory Hub and their sampling and consent forms can be downloaded here.

Sending a sample for genetic testing will not result in an automatic referral to the Medical Genetics service. This will need to be made independently if required.

Referrals to the Medical Genetics service can be emailed as an attachment to add-tr.referralsclinicalgenetics@nhs.net, or sent by post to:

Clinical Genetics, Box 134, Addenbrooke’s Hospital, Cambridge, CB2 0QQ

Referrals into the clinical cancer genetics service are indicated for:

  • Patients likely to be at increased risk of developing cancer due to their personal and/or family history in close relatives (parents, siblings, children). Where possible, it is best to refer a relative who has been affected with cancer in the first instance, rather than their unaffected relatives.
  • Patients meeting National Genomic Test Directory Criteria for inherited cancer genetic testing
  • Patients who have a likely pathogenic or pathogenic variant (mutation) in a cancer predisposition gene or a diagnosis of a cancer predisposition syndrome.
  • Patients with a relative who has a likely pathogenic or pathogenic variant in a cancer predisposition gene or have a diagnosis of a cancer predisposition syndrome.

General guidance

Not all referred individuals will be eligible for extra surveillance or genetic testing.

Some will receive an advice letter from our cancer genetics service whether or not they are invited to a clinic appointment. These guidelines are not exhaustive and health professionals can seek advice from our cancer genetics service about whether a referral is appropriate.

Please telephone 01223 216446 (9am - 5pm Mon-Fri) and ask for the on-call team, or email queries to add-tr.clinicalgenetics@nhs.net.

If your query is urgent, you can ask the Addenbrooke’s Hospital switchboard to connect you to the on-call genetics team mobile numbers during these hours.

Investigations for results from tumour testing

For cancer patients who have a gene variant identified in their tumour which may be hereditary (i.e. also in their non-tumour germline DNA), confirmatory testing can be offered.

We can support cancer teams to do this and assess if a Medical Genetics referral is indicated. Alternatively, a referral can be made to the Medical Genetics Service with a copy of the tumour genetic test results for review as to whether confirmatory testing is needed.

Key referral indications for some of the more common cancer types

Please also see the National Genomic Test Directory Criteria.

Breast cancer

If rapid genetic testing for eligible patients is required, direct testing can be arranged by the treating clinicians (this is called mainstream testing).

Mainstream test results are returned to the requesting clinician, who should then refer any patients found to have a likely pathogenic or pathogenic germline variant to Medical Genetics.

Referral indications:

  • Breast cancer <40* (includes high grade DCIS)
  • Bilateral breast cancer <60*
  • Triple negative breast cancer <60*
  • Male breast cancer at any age*
  • Breast cancer and a family history of breast/ovarian/prostate/pancreatic cancers in close relatives requiring a Medical Genetics assessment of familial risk and eligibility for genetic testing
Ovarian cancer

Patients with epithelial ovarian cancer are eligible for genetic testing with no upper age limit*.

This is usually a mainstream test organised by the cancer team as part of treatment planning without Medical Genetics involvement. A referral to Medical Genetics is subsequently required for women found to have a likely pathogenic or pathogenic germline variant.

In families with two or more ovarian cancers, a referral for a Medical Genetics assessment is appropriate. If the affected women are deceased, it is appropriate to refer their close adult female relative(s).

Colorectal cancer and polyps*

Please see our Colorectal Cancer Referral form with the referral criteria.

Gastric cancer
  • Diffuse gastric cancer below age 50
  • Diffuse gastric cancer and a relative with gastric cancer at any age
Endometrial cancer
  • Endometrial cancer with unexplained deficient mismatch repair (dMMR) tumour suggesting Lynch syndrome*
  • Endometrial cancer with strong family history of cancers in close relatives
  • Young age at diagnosis (<30)
Renal cancer
  • Renal cancer <40 (or <50 if Type 2 papillary renal cancer)*
  • Bilateral or multifocal renal cancer at any age*
  • Renal cancer and a family history of renal cancer or possible inherited syndrome
Pancreatic cancer
  • Pancreatic cancer under 60*
  • Pancreatic cancer with a previous malignancy
  • Two or more cases of pancreatic cancer in the family <70
Paediatric/Young adult cancer
  • All solid tumours under 25 years if Paired Whole Genome Sequencing (PWGS) or cancer panel not previously conducted
Other
  • Three or more primary cancers in an individual at a young age
  • Three or more cases of cancer at the same site in a family
  • Unusual pattern of cancer in the family, especially if at young ages
  • Any two of: sarcoma, breast cancer, brain tumour, leukaemia or adrenal cortical tumour, one diagnosed <45
  • Childhood cancer with further cancers in the family history

*Eligible for mainstream genetic testing according to the National Genomic Test Directory Criteria

Find sampling and consent forms here.

For clinical support in arranging mainstream genetic testing within cancer teams, please contact the on-call genetics team (see details in ‘General guidance’, above).

For help with genomic risk assessment and referral guidance, QGenome (available via the Clinibee app (opens in a new tab)) provides information in an accessible and user-friendly format.