Getting the information you need
Family history and genetics teams are keen that you receive as much information as you need about your family history and risk of breast cancer. You should be given all the information you need to be able to work in partnership with them to make decisions about your care.
Everyone is different and you can control the amount of information you are given – let your specialist know what’s right for you. If you don’t understand something, don’t be afraid to ask for an explanation, and keep asking until you are sure you understand. It’s fine to ask questions and to ask for more support. Equally, if you would prefer not to know something, you shouldn’t be given that information.
In addition to your family history or genetics service, there are some excellent organisations who can provide more information.
If you have any questions that are not covered by this guide, you are very welcome to contact Breast Cancer Now.
- You should have the opportunity to make informed choices about your care and take part in decisions about your care
- You should be offered accurate information that is tailored to you in terms of the format it is provided in, and the topics it covers.
Tips on taking new information on board
People often find it difficult to think of questions to ask immediately after being given important new information. Following your consultation you will receive a letter from the clinic summarising the discussion.
You might find it useful to:
- Ask for written information to take away and look at later.
- Tell your doctor or nurse that you’d like a second appointment to discuss the information you have received when you are feeling calmer.
- Take a recording device into your appointment and record your consultation.
- Take a family member or friend with you so that they can help you remember the questions you want to ask and what has been said. You might want to ask them to take notes for you during the consultation.
- Write your questions down as you think of them – perhaps when you are back at home – and take them with you to your next clinic visit.
When you first start thinking about your family history, your GP can help you make a decision about whether you want to be referred to a specialist (if you are eligible). If you are currently receiving treatment for breast cancer, your breast care team can help you to think about the implications of looking into your family history.
If you are later referred to a specialist at family history or genetics centre, they will be able to provide you with a range of support, including helping you understand your risk and options, make decisions about your care and prepare for conversations with family members. When accessing genetic testing, you will be offered genetic counselling before you start the process, to help you understand how genetic test results could affect your and your family’s lives.
There are some excellent organisations who can provide more support, including the National Hereditary Breast Cancer Helpline. Some genetics clinics also have support groups for their patients – ask your genetic counsellor if there is one you could join if you would like to.