Coping with a high risk of cancer

You might fall into any of the categories below:

• You might have had a genetic test that showed you have a gene mutation.
• You might have decided not to get tested, but you have a strong family history that suggests a genetic cause for the cancers in your family.
• You might not have been able to have a genetic test because you don’t have a living relative with that cancer who could be tested.
• You might not have been able to be tested because genetic testing is not available for the type of cancer that runs in your family (for example, testicular cancer).
• You might have had a genetic test that didn’t find a mutation. But, because of your family history, you have still been advised that your family is considered as having a high risk of developing a certain cancer.

Coming to terms with the knowledge that you and some members of your family have a higher than average cancer risk can be difficult.

Some people say that being told about their high risk felt like finding out that they had cancer already. The only question in their mind was ‘When will it happen to me?’

Others say they felt as if history was repeating itself, with people in every new generation getting cancer, and bringing suffering and bereavement to the whole family.

Other people say that after the initial shock, they felt relieved that they’d found out about their risk. They say that the facts are less scary than the fear they had before. They felt better knowing everything there is to know, even if it is limited knowledge.

Living with uncertainty

We are only just beginning to understand the role of genetics in cancer. However, identifying cancer susceptibility genes doesn’t give us all the answers. Genetic testing doesn’t tell us who will definitely get cancer, or when.

This can cause anxiety|. It’s natural to want to know what is likely to happen to us, so that we can plan for our future. However, often definite answers aren’t possible so you may have to find ways of living with uncertainty.

Your family and other sources of support

Living with the threat of cancer in your family can be very difficult. Talking about your feelings and worries may help.

If you find it difficult to talk to your relatives or partner it may help to get support from people outside your family, such as a genetic counsellor or a friend.

Relationships in your family can feel complicated or tense when you’re coping with inherited cancer risk. If genetic tests have identified some family members who are at an increased risk and some who aren’t, people may feel guilty or ashamed for different reasons. It’s important to acknowledge that hereditary cancer can be a difficult issue to come to terms with.

Some people say that their relationships and family ties became stronger after they discovered the problems their family was facing and began working through them together. You may feel that you can rely on your family for support more than you could before.

Many people say that knowing about the cancer risk in their family has allowed them to make appropriate decisions to increase their own and their children’s chances of good health. You can read more about these in the next section.

Some people keep a simple record of their family’s health and major illnesses, so that this information is available for their children or other relatives if they ever need it.