Coping with a high risk of cancer in your family

You might fall into any of the categories below.

• You might have had a gene test which found a mutation (positive result).
• You might have decided not to get yourself tested, but you have a strong family history which 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.
• Genetic testing is not available for the type of cancer running in your family (for example, testicular cancer).
• You had a genetic test, and no mutation was found. But, because of your family history, you have still been advised that your family is considered at 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 is 'When will it happen to me?' Others say they feel as if history is 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 first shock they felt relieved that they found out about their risk. They say that the facts are less scary than the fear they had before. They feel better when they know everything that is to be known, even if it is limited knowledge.

Your family and other sources of support Back to top

The relationships in your family can feel complicated or tense when you are coping with the risk of inherited cancer. If genetic tests identified some family members who are at an increased risk and some who aren't, you may all 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.

Whether you feel like talking about this with your relatives or not, it may be helpful to get support from people outside your family, like your genetic counsellor, or a friend. You can also speak to our cancer support specialists.

Some people say that their relationships and family ties became stronger after they discovered the problems the family is facing and began working through them together. You may feel that you can rely on your family for support and help more than before you found out. Many people say that knowing about the cancer risk in their family means that they can make appropriate choices to increase their own and their children's chances of good health. 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.

Early detection of cancer - screening Back to top

Screening means checking for early signs of the cancer or cell changes that happen before a cancer develops. There are different screening techniques for different types of cancer. Some types of screening such as bowel screening| can pick up pre cancerous cell changes so that they can be treated before cancer develops. But most types of cancer screening pick up cancers at an earlier stage when they can be treated more effectively.

Reducing your cancer risk Back to top

Surgery

Some people with a high cancer risk decide to have risk-reducing surgery. This means removing the tissues which are at risk of getting cancer (eg the breasts|, the ovaries). This type of surgery is only offered to people with a very high risk, such as those who have some types of cancer susceptibility genes. Surgery greatly reduces, but does not entirely get rid of, cancer risk.

No one can tell you whether this is the right or wrong thing for you to do. It is an entirely personal choice and may depend on:

• your age
• whether you know for sure that you have a genetic mutation
• how you feel
• whether you still want to have children (in the case of removal of the ovaries or womb).

If you are considering this option at all, you have the right to take your time over the decision and to get help and advice from doctors and counsellors. It's helpful to discuss all the advantages and disadvantages with your doctor, family and other people you trust and then spend some time thinking about this.

Research

If you know that you have an increased risk of getting cancer, you might be offered the opportunity to join research trials|, looking into genetic causes for cancer or ways of preventing it. For example, different drugs are being used to try to reduce inherited breast and bowel cancer risk. These are known as chemoprevention trials. Whether you take part is entirely your decision.

Optimising your health

Some cancer risk factors, such as age and family history, are beyond your control. But there are some risk factors you can control, known as lifestyle risk factors.

About 1 in 4 cancers diagnosed in the UK (25%) could be avoided if people made changes to their lifestyles.

There are various other things you may wish to consider to help you reduce your risk|.