Cancer Genetics
Cancer is a common illness expected to affect 1 in 2 people in their lifetime. Therefore, many people will have some family history of cancer. Most of these cancers happen by chance rather than having an inherited cause. Only around 5-10% of cancers have an inherited component.
The cancer genetics service performs risk assessments for patients affected by cancer and/or with a family history of cancer to determine how likely it is that the cancer is inherited, what an individual’s risk is, whether genetic testing is possible or appropriate and what measures can be taken to manage or minimise inherited cancer risks.
We have developed the following guidance for Healthcare Professionals to assess which patients meet our referral criteria.
Once you have read the guidance, if you are still uncertain whether your patient should be referred, please email WGH.ClinicalGenetics@nhslothian.scot.nhs.uk. Alternatively, you can contact us on 0131 537 1116 and ask for the Duty Genetic Counsellor
How to refer
- Patients with a family history of cancer:
Patients who have not had cancer but report a family history of cancer should be directed to complete our family history questionnaire if they meet any of the family history criteria on the pages below:
Referral Guidelines Patients with a personal or family history of breast cancer
Patients with a personal or family history of colon cancer
Personal or family history of ovarian cancer
The patient should only be directed to the Family History Questionnaire, if you believe that the family history is significant. The questionnaire can be printed out for a patient, or you can send them the website link below.
Patients should return this to us directly to initiate a referral. They must complete the first section which asks which service/healthcare professional referred them to this questionnaire. The questionnaire is an editable PDF and by clicking submit at the end of the questionnaire, this should attach to an email to be sent directly by the patient.
Alternatively, patients can attach it to an email manually and send this to WGH.ClinicalGenetics@nhslothian.scot.nhs.uk or print out the questionnaire and post it to:
Referral Administration
SE Scotland Clinical Genetics Service
Western General Hospital
Crewe Road South
Edinburgh
EH4 2XU
Patients can drop the completed FHQ directly to their GP surgery who can return it to Clinical Genetics Department if this agreement has been made by their GP practice.
What if my patient can’t complete the questionnaire?
If you think that the family history is significant, but you do not think your patient is able to complete the questionnaire (for example due to learning difficulties or if they cannot read/write English) please refer them directly stating as much family history as possible and your reason for not giving them the family history questionnaire.
Where possible, all family history referrals should be made via the self-referral questionnaire route. This is because cancer types and ages at diagnosis are often misreported, and the questionnaire allows the cancer genetics service to verify diagnoses where appropriate. If a referral regarding family history of cancer is received into the department without the questionnaire and a reason why has not been given, the referral will not be accepted.
Referrals are triaged by the Clinical Genetics team. Depending on the family history, an assessment may be completed by letter or appointment.
It is important that patients are aware that they may not receive a Clinical Genetics appointment and may be referred directly for screening.
- Patients with a personal cancer diagnosis:
Patients affected by cancer will be offered genetic testing if they meet any of the criteria for genetic testing listed in the Scottish Genetic Test Directory. This can be found at the link below:
Patients with a personal cancer diagnosis who are eligible for genetic testing, who have not already had genetic testing undertaken as part of their treatment, can be referred directly to Clinical Genetics via:
- SCI Gateway:The pathway is: WESTERN GENERAL HOSPITAL – CLINICAL GENETICS – CLINICAL GENETICS
OR
OR
- Post:
Referral Administration
SE Scotland Clinical Genetics Service
Western General Hospital
Crewe Road South
Edinburgh
EH4 2XU
- Patients with a known pathogenic variant/genetic alteration in the family:
If a likely pathogenic or pathogenic variant in a known cancer predisposition gene e.g. BRCA1, has already been identified in a family member, these patients should be referred directly to Clinical Genetics with the name and date of birth of the relative, the gene in which the variant has been identified and where they were tested. If your patient has been given a letter from a Genetics service and/or a test report from a relative, it is extremely useful if a copy of this is attached to the referral.
Referrals can be sent via:
- SCI Gateway: The pathway is: WESTERN GENERAL HOSPITAL – CLINICAL GENETICS – CLINICAL GENETICS
OR
OR
- Post:
Referral Administration
SE Scotland Clinical Genetics Service
Western General Hospital
Crewe Road South
Edinburgh
EH4 2XU
- Patients that do not meet referral criteria:
Any patients that do not meet referral criteria will likely have a risk of cancer similar to the general population. Please reassure these patients that they do not have a significantly increased risk of cancer. For these patients, the most effective way to reduce the risk of cancer is to lead a healthy lifestyle and the resources below may be helpful for patients:
Home – Scottish Cancer Prevention Network (cancerpreventionscotland.org.uk)
Can cancer be prevented? | How to reduce your risk of cancer (cancerresearchuk.org)
Causes and risk factors | Macmillan Cancer Support
CoppaFeel! | Check Your Chest | Breast Cancer Awareness
A patient’s risk assessment may change if there is a new diagnosis of cancer in the family in future. If this is the case, where appropriate they can be advised to return for further assessment.
