We have compiled a list of what to consider before telling your child they may carry a cancerous gene, direct from the families that are navigating this issue every day. These are tips and inspiration to make this part of the journey a little easier. Obviously, we always recommend discussing all worries with your healthcare professional first. As the parent mother or father, you are 50% likely to pass on the gene.
Ensure that you know your facts before sitting down with your son or daughter.
- Ideally, we recommend they be “emotionally ready” for this conversation; somewhere between 16 and 22 years of age when you approach the subject. Each child is different, you will know their emotional age. Try and tell them when they are ready, not when you are.
- Ensure to approach this conversation in a quiet time. Perhaps not in front of the TV or not straight after your own surgery.
- Don’t talk about this subject during times of stress for your child such as during exams. This is a large subject and will take some time to discuss and sink in. Both you and your child need to be in a good place mentally to be ready to discuss this.
- Be well informed yourself and have a genetic counsellor available to you. If you can’t broach the subject yourself to your child, I suggest you get the counsellor to do it for you. They have the knowledge and experience regarding genetic mutations and testing. Your child can then ask a multitude of questions to a professional and get the answers they need.
- Your child will experience a varied number of emotions from fear, to guilt, to hate, to indifference and confusion etc. All this is okay. This is a lot to take in. All you can do is guide them, but ultimately, they must make the decision regarding their genetic testing. You should not push them into it.
- Try to keep your emotions in check. This is the hardest part as you are emotionally invested in your children. They need facts and open discussion. Of course, they may get upset and you need to be that support person. If you need to have a good cry together then by all means do so. But try and start the conversation with a level head and focus.
- Don’t be scared to tell your children. They have probably witnessed your own journey and have supported you this far. Children are resilient creatures and can bounce back quickly. Others may need more time to adjust. But the conversation should happen so they can make their own decisions about their future.
- Try not to let the guilt control you. It is not your fault that you carry the gene. Nor is it your fault that the gene passed onto your children. All we can do is be proactive and protect our children the best way we can with monitoring and knowledge. Your child may blame you for passing on the gene, this is an initial reaction. But in time they will understand that you didn’t wish this on them and that you would take it back if you could. Remember, this is not your fault. You’re being a great parent by having this conversation, and potentially saving their life.
- If the tests come back positive for one of the genes. Try and let your child’s emotions guide you. They may be shell shocked or afraid or not ready to accept it. Whatever happens let time pass and wait, sleep on it, whatever you need. There is no need for hasty actions or decisions. Just be there when they need you. Let the tears come if you feel it appropriate. You know your child best; each situation is different. Some children feel empowered and ready to face it, others not so. Just wait and see what happens and work together with your child. Head to your genetic counsellor for the best advice how to precede once you get the results.
Monitoring or surgery is one piece of the puzzle. Let your child decide how they wish to proceed. A genetics councillor is probably the best to keep in touch with as they will be aware of the family history and can advise on monitoring strategies. Such as yearly mammograms, ultrasounds, MRI’s, manual check-ups etc. Surgery is something that may take years to come to terms with. Check with your genetics councillor regarding recommendations and suggestions. Ultimately it’s your child’s decision what they do.