Informing Your Family Members about Hereditary Cancers
Family members will generally be very thankful to receive information about hereditary cancer as it allows them to make informed choices. However, at times their reaction might be negative so it is always good to think about possible scenarios and what questions might be asked so you can be prepared before you have the conversations. At times, it might be useful to advise close family that you are having a genetic test, this can help prepare them for possible outcomes that may affect them.
Is there a benefit of my family knowing about their chance of an inherited cancer condition?
Knowing they are at risk can allow family members to organise genetic counselling and, if needed, genetic testing, cancer screening and medical care aimed at preventing cancer. This can give them more control over their health and help them to live a longer, healthier lives.
Which family members need to know if I have a big family?
Your Genetic Counsellor or staff from the New Zealand Family Cancer Service (NZFCS) can talk to you about which blood relatives should be alerted about their risk. Once you have a list it will be a matter of working out the best way for each person to be contacted. Sometimes it is helpful to enlist the help of another family member to facilitate this task.
Is there anything that would help sharing the information with family that they could have hereditary cancer easier?
People often feel quite unsure about what to say to their family. It may help to discuss your approach beforehand with your doctor or genetic counsellor or staff from NZFCS. Also, discuss it first with someone you are close to and feel most comfortable with in the family and share any written information you have regarding
Talking to my close relatives should be fine but, what about the ones I’m not normally in touch with?
It can be difficult to contact those we haven’t seen or heard from for a while to give them information about a health problem.
You may be able to ask a family member who is in touch with others in the family to pass on the information. Talk to that person first, and perhaps give them a copy of the letter from your clinic or doctor, explaining about genetics, screening and management. This letter can be relatively anonymous but in having a genetic test you must understand the potential importance there could be for your family – close and more distant.
What can I do if a family member reacts angrily?
This can be a difficult and uncomfortable situation; however, be reassured that anger can be a normal response in such circumstances and is not necessarily directed at you personally.
Stay calm and try not to respond angrily or defensively. Tell them you felt they had a right to know information that might affect their health, or their family’s health in the future. Emphasise that nothing is being forced onto them and they might like to think it over or discuss it with others. Leave the lines of communication open so they know they can get back to you in the future without losing face. You have given them the option to take this information further – they may be more upset at not having the opportunity to do so and potentially avoid a cancer diagnosis.
What if a family member says they “don’t want to know”
Respect their right “not to know” and it’s their choice.
Reassure them that they have been notified out of concern for their own wellbeing and that of their children. Emphasise that if they change their mind or if their children wish “to know” that you will be available to talk again and can give them contact details of someone who can help.
Remember individuals can react in different ways to the same information and this is usual. Providing information gives your family options and it is up to them how they may proceed.