Receiving a BRCA1 and BRCA2 Test Result that Identifies a Mutation

  • Reference Number: HEY-811/2016
  • Departments: Gynaecology, Oncology (Cancer Services)

Introduction

This leaflet has been produced to give you general information about your test results.  Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and your doctor, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.

Results of your BRCA test

You had a BRCA1 and BRCA2 gene test because you have had cancer.

The test result has shown that you have a mutation (gene change) in either the BRCA1 or BRCA2 gene. The exact details of the mutation are given in the test report.

What does this mean?

BRCA1 or BRCA2 mutations result in increased risks of breast and ovarian cancer, and occasionally other cancers. Therefore, this result could provide an explanation for why you developed cancer.

Your cancer team will discuss with you if this result has implications for your cancer treatment and/or follow-up.

This result has implications for your future health and potentially for your relatives. A referral has been made to the Genetics Clinic to discuss these issues further. At the appointment you will be able discuss your future risks of cancer and your options for cancer screening and measures to reduce the risk of cancer. The potential implications for relatives will also be discussed. The processes by which your relatives can have discussions themselves to decide if they wish to have testing will be explained.

You may find it helpful to read the information booklet “A Beginner’s Guide to BRCA1 and BRCA2” which gives more detailed information. This can be downloaded from www.royalmarsden.nhs.uk/sites/default/files/files_trust/brca_0.pdf.

Useful information

Information on Gynaecology Services at Hull and East Yorkshire Hospitals NHS Trust can be found at: www.hey.nhs.uk/gynaecology.

Yorkshire Regional Genetics Service

www.pathology.leedsth.nhs.uk/pathology/Departments/Genetics.aspx.

Department of Clinical Genetics, Ward 10, 3rd Floor,
Chapel Allerton Hospital, Chapeltown Road,
Leeds, LS7 4SA.

Tel: 0113 392 4432. Fax: 0113 392 4434.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Gynae-Oncology Clinical Nurse Specialist Team on tel (01482) 624033.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

  • you must be able to give your consent
  • you must be given enough information to enable you to make a decision
  • you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.