A genetic counsellor, like Dr Hilda High from Sydney Cancer Genetics who provided expert input into this article, will help you unravel the clues to work out if your family history shows an inherited pattern of breast cancer, and possibly ovarian and other types of cancer.
If a pattern exists, an abnormality in a gene, such as BRCA1, BRCA2 or PALB2, may be causing the cancer in your family, and the only way to know for certain if this is the case is to undergo genetic testing.
When a parent receives the news that they are positive to an abnormal gene or familial mutation, it is natural that they become concerned for their own children and may experience feelings of guilt about potentially passing the abnormality on despite the fact that you can’t do anything to prevent it being passed along (unless you were to consider IVF prior to conception )
When your children are under the age of 18
When it comes to children in your family under the age of 18, most experts advise against testing for abnormal BRCA and PALB2 genes. In regard to this advice, Dr Hilda High states: “Testing should occur when you will act on the result. The reason we do not recommend testing children under 18 for a BRCA mutation, is that their risk at this age is very, very low. Testing would not change their management.”
Predictive testing usually occurs sometime after age 18, when they are thinking of starting their own family or when screening would start (age 30 for women or age 40 for men). Dr High recommends that parents provide their children with information about their cancer risks, when the time is right, noting that sharing this information does not require the child to have a predictive test.
When your children are over the age of 18
If you have children who are over the age of 18, Dr High recommends discussing the familial mutation and the possibility that they also carry it, with them.
Bear in mind that each family, and each child, is unique and as a parent you know your child best when it comes to sharing the information. Dr High also highlights that timing is everything when a child undergo’s predictive testing e.g. NOT during the HSC!
When you do choose to sit down with your child or children to have this conversation, Dr High always suggests framing the information in a positive way. For example: “We all carry mistakes in important genes. In our family we are lucky enough to know what the mistake is, so we can do something about it.”
It is important to take the time to understand the medical and genetic facts regarding your familial mutation, to feel confident and emotionally prepared so that you can handle their reactions. Your genetic counsellor can help you prepare for these conversations.
How to know if you are ready to share the information with your adult children.
Signs of comfort with your emotions:
- You feel calm when you talk about the gene abnormality
- You feel positive about your own medical decisions
- You are confident that you do what you can to avoid cancer
- The future holds more promise than the past
- Knowledge is power
- You know your daughter/son can handle it
Signs of not yet being comfortable with your emotions:
- The thought that your daughter/son inherited the mutation is unbearable
- You get upset when you think or talk about it
- You feel very emotional when you think of your children’s futures
- You try to avoid thinking about it or talking about it
- You often feel angry, fearful, worried or guilty about your family’s familial mutation
Dr High states that it is common, just after your own diagnosis, to have some or all of the above feelings of discomfort. However, they should not persist. If they do, it is important to discuss your anxieties with a counsellor or psychologist.
If you feel you will need to process your emotions further before sharing with your children, there are many resources available to you, including:
- Support groups like Pink Hope
- Your genetic counsellor
- Counselling with an oncology psychologist or other mental health professional
This article was sponsored by Astra Zeneca and developed independently by the team at Pink Hope in consultation with medical experts.