How to get tested: What’s my entitlement?

BRCA1/2 genetic testing is usually carried out at a genetics clinic and anyone can be referred to a genetic service. You should be offered genetics counselling before you decide whether to be tested.

Click on the statement below that best describes your situation to find out what your entitlement is.

 

I have no personal history of breast or ovarian cancer, but I have a living relative who does and is available to be tested

Entitlements:

  • The NICE clinical guideline CG164 1.5.11 states that your affected relative should usually be offered genetic testing first before you, or any other relative.
  • In order to access this NHS England E01/P/b says that genetics testing will be offered where your relative’s carrier probability is more than 10%.
  • If your relative tests positive NHS England E01/P/b says that genetics testing will be offered where your carrier probability is more than 10%.

Next steps:

  • Your relative should speak to their clinical oncology team about being referred for genetic testing.
  • If they test positive you will be informed and invited to go to your local genetics centre.
  • If they test positive and you do not get contacted then you can go and see your GP and ask for a referral via them by explaining the situation.
  • Download this letter to take with you to illustrate your entitlement.
  • If your relative tests negative for BRCA1/2 gene mutations you will not require testing.
  • It is always a good idea to find out about the cancer history in the other side of your family, and seek advice from your GP if you are concerned.
  • BRCA1/2 gene mutations are not just carried on a mother’s side, it is possible for a father to carry the mutation and pass it on to his children too

What does testing involve?
 

I have no personal history of breast or ovarian cancer, I have a relative who does but they are unavailable for testing

Entitlements:

  • The NICE clinical guideline CG164 1.5.12 states that if your relative is unavailable you may still be able to access testing by speaking to your GP.
  • NHS England E01/P/b says genetics testing will be offered where your carrier probability is more than 10%.

Next steps:

  • If the person is unavailable because they have died then you should go to your GP to discuss your family history and request referral for genetic testing.  If there is a tumour sample available this would assist with the process, but it is not essential.
  • If the person is unavailable because you have no contact with them then you should go to your GP to discuss the family history that you are aware of and explain the situation.  They may then refer you to your local genetics centre for further discussion with a genetics counsellor.
  • Download this letter to take with you to illustrate your entitlement.

What does testing involve?
 

I have a family member who has already tested positive for a BRCA1/2 gene mutation

Entitlements:

  • There are no specific NICE guidelines in this situation.
  • NHS England E01/P/b says you will be offered genetics testing where carrier probability is more than 10%.

Next steps:

  • Your family member may have already advised you to contact your local genetics centre, or passed your details on to them to contact you directly.  Do not worry if this hasn’t happened, you should still be able to get tested.
  • Go and see your GP and discuss your family history with them.  They can refer you on to your local genetics centre for further discussions about your family history.
  • Download this letter to take with you to illustrate your entitlement.

What does testing involve?
 

I have not had breast or ovarian cancer, no known history of either disease and no known BRCA gene mutations in the family

Entitlements:

  • In this situation it is unlikely that you would be eligible for testing under any of the current guidelines.

Next steps:

  • If you have concerns over breast or ovarian cancer then you should familiarise yourself with key information about the disease.
  • If you have concerns about BRCA1/2 gene mutations you should try and find out about any family history of cancer.  Make an appointment to see your GP and explain your concerns.

What does testing involve?


What about my children?

You can ask your GP about testing your children if they are under 18 but it is not usually available. If they are over 18, then the GP may prefer that your children go to see the GP themselves.

The GP should be able to discuss this with you and, if appropriate, refer you to the genetics centre for a discussion about your carrier probability (how likely you are to have a BRCA1/2 gene mutation) and whether or not a BRCA1/2 genetic test is the right choice for you.

These are NHS England guidelines. We are currently developing tailored information for patients in Scotland, Wales and Northern Irleand. If you have any questions in the meantime please contact Ross@ovarian.org.uk