Genetic Information with Family Members
Sharing the News
Getting a diagnosis of cancer, or being told that you are at increased risk of cancer, are both difficult, painful situations to be in. It usually takes some time to come to terms with your own diagnosis. Sometimes it can be hard to accept.
When?
When you have adjusted to the knowledge about yourself it is important that you tell your relatives. This is because they can support you better if they understand what you are going through. It is also important because there may be other people in the family who are living with a higher risk too, but don’t know it. Usually the sooner you tell your family what has happened the better. This gives people time to take in information and ask questions when they are ready.
Why?
Fortunately there is very good screening for bowel cancer, this is usually by colonoscopy. This examination of the bowel can be arranged for your relatives to check them for polyps or early signs of cancer. Screening can save lives if the people who need it get it. Lifestyle can also affect risk, so there are many ways that people can help themselves and benefit from knowing about their risk of cancer.
Who?
Not everyone in the family may need screening. If you share the knowledge of your diagnosis with all your family, then the people who want to find out more for themselves can go to their GP and ask to be referred to a specialist. It is usually the specialist in genetics, gastroenterology or surgery who decides what screening would be needed. If a gene alteration has been found in the family then relatives can have a genetic test to find out if they are at risk or not.
How?
We understand how difficult it can be sometimes to find the right time or the right words to explain the situation to your family. We have created this website to help in this process. It allows you to safely store letters, test results, family trees and other information that you might want to share with your family.
When you first get referred to a specialist you might want to mention this to your family. This means that they can be prepared for the news of a diagnosis when it is confirmed. Talking about these issues on the phone or face to face allows your relatives to ask questions more easily than if you write to them.
Following a discussion it is then helpful to send them more detailed information either by letter or email. Of course, every family has ways of communicating that work for that family and no two families are the same. The advice we give here is based on what other people have told us worked for them.
Relatives will need to know the basic facts as you know them. It is not usually important to go into great detail. Sometimes it is helpful to tell your relatives where they can find out more information for themselves.
When explaining about the diagnosis in the family it is sometimes easier to tell the story of how you learnt yourself. Be prepared for your relative to appear not to believe you at first. Disbelief and denial are common reactions to difficult news. They protect the person from immediately feeling the impact of the news.
Some people want lots of information, this is also a normal way of adjusting.
Many parents worry about how to talk to their children about illness in the family. Sadly some parents try to avoid telling their children when there is a genetic increased risk of cancer in the family. This may be because they think their children will become upset. It might be that they don’t know what words to use, or they worry that they may become upset themselves.
Fortunately research has shown that in families which are more open about illness children cope better.
Children benefit from being included in conversations because they feel valued and less confused.
They may have picked up some information and need help understanding what is accurate and what is not. Children may need to be reminded that not everyone with a gene alteration gets cancer.
When is a good time?
There is no ideal time and no ‘right’ age but keeping secrets from children can make them more worried. Children have good imaginations and can make up stories to explain what has happened in their family. If you notice changes in your child’s behaviour it may show that they are worrying.
There will be benefits to the family of being open about the risk of cancer, such as giving the children insight to understand that parents’ being upset is not their fault. Although school might be affected for a short while, children usually find it more upsetting if there are secrets and they are worrying about something they don’t understand.
Talking to children can often be easier while you are doing something together. What is said needs to be in language the child understands but it is important to give a name to the condition, like Lynch syndrome or FAP, as this helps them ask you questions and discuss it at other times.
Research has shown that by age 8 children learn not to ask questions that may upset their parents. This means you may have to start the conversation and show them that you are willing to talk about it at other times.
West Midlands Genetics Service have made a leaflet called ‘Talking to Children and Young People about Hereditary Cancer’ which was developed with the help of experts. It is available from their website under the Cancer Genetics section, or directly here.
RipRap is a website developed for teenagers who have a parent with cancer. Teenagers can learn more about cancer and its treatment and through real stories they can read the experiences of other young people and share their own stories. www.riprap.org.uk/about/
The YouTube videos below are a series of three designed by the charity Lynch Syndrome UK for children, they explain about Lynch syndrome in a simple, positive way.