Frequently asked questions

What is the best age to tell my children about their genetic cancer risk?

There is not one particular age at which is best to tell children about the genetic cancer risk in the family. Rather, it may be helpful to consider what are the reasons you are considering communicating such information with children and whether you and your child are ready for that conversation. Further information that may help you in considering the timing of a conversation can be found here.

 

Is it up to me to inform all my relatives who are at risk?

As genetic cancer risk affects blood related family members, it is important to share the information as widely as possible, even in circumstances where parents of family members have died (irrespective of whether this was due to cancer or not). Communicating is much like any other task, many hands make light work so you may want to consider who else can help you get the word out in your family. Tips for sharing information with your family members can be found here.

Can anyone in my family speak to a genetic counsellor? Do they need a doctors (GP) referral?

If there is a known genetic cancer risk in your family is best to speak with a local doctor first as many services will require a referral from a local doctor in order to make an appointment. It is helpful that your local doctor includes information about what the cancer gene involved in your family is, in which relative it has been identified and the name of the clinic they were tested (if known).

You do not need a referral before contacting a genetics service to ask some preliminary questions, obtain more information about referral requirements or to find out where your local genetics service might be. For more information about this see here.

What should I do if I have a family history of cancer?

If you have a family history of cancer it is important to gather as much information as you can about the family history, such as who has had cancer, what type and what age they were diagnosed with cancer. We would then recommend you share that information with your local doctor (GP) who can assess both your cancer risk and whether you need a referral to a specialist genetics clinic.

Is it better to discuss the risk as a family or individually?

Every family is different; in some situations, it may be appropriate to share genetic risk information with a group of family members at the one time but in other situations telling family members individually is a better approach. It can be helpful to consider how you think the person/s might respond and whether they would feel more comfortable to learn this information in front of others. If you do opt to tell a group of family members, at the same time it can be helpful to keep the information general and provide something written with details of where to get more information either from you or an expert. That way your relatives can follow up at their own pace.

What if family members do not want to know?

Not everyone will want to know about their cancer genetic risk. It is important you are respectful of your family member’s decision even if you don’t agree or understand it. You may suggest that they can contact you again and/or provide something written so they know where to access information if they change their mind in the future.

Does my family member have to have a genetic test?

No, it is important your family members are aware there is information they can access relating to genetic cancer risk, but the decision to have a genetic test and when to do so it a deeply personal decision. Genetic services are designed to support a person to arrive at a decision about genetic testing that it is best for them.

I don’t want to be the bearer of bad news, what should I do?

Sharing genetic risk information can be daunting. However, many cases people who receive genetic risk information value the opportunity to know. Sharing genetic risk information allows family members to know what health risks they may face and how they can manage these risks to either find cancer early or reduce their risk. Focusing on the benefits of sharing information and who can help you to do this can sometimes help the task feel less daunting. If you are feeling overwhelmed it may be useful to seek help from a genetic counsellor, health professional or trusted friend/family member.