Living with a high genetic risk of cancer

Transcription

1 Living with a high genetic risk of cancer This information is an extract from the booklet, Cancer genetics how cancer sometimes runs in families. You may find the full booklet helpful. We can send you a copy free see page 5. Contents Coping with a high risk of cancer Managing your cancer risk Living with uncertainty Coping with a high risk of cancer Due to your family history you might be told that your family probably carries a genetic mutation, which makes it more likely that you or other relatives might get cancer. 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. Macmillan and Cancerbackup have merged. Together we provide free, high quality information for all. 1 of 5

2 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 The relationships in your family can feel complicated or tense when you re 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 on The Cancer Counselling Trust also offers support to people who are struggling with the effects of cancer. You can call them on 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. Page 2 of 5

3 Managing your cancer risk Early detection of cancer - screening 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 Surgery Some people with a high cancer risk decide to have riskreducing surgery. This means removing the tissues which are at risk of getting cancer eg breasts or 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 time thinking about it. Research If you know that you have an increased risk of getting cancer, you may 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 in research is entirely your decision. We have information about research trials that you may find helpful. Page 3 of 5

4 Optimising your health Many people who find that they are at an increased risk of getting a particular cancer look for ways of optimising their health by leading as healthy a lifestyle as possible. There isn t good evidence about how much lifestyle choices may affect people who have a strong family history of cancer. But, some people say that following a healthy lifestyle makes them feel they are doing whatever they can to control their risk of cancer. Giving up smoking, eating a balanced diet, exercising moderately and maintaining a healthy weight are all good for you regardless of your cancer risk and can make you feel better in many ways. 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. Getting support Living with the threat of cancer in your family can be very difficult. Talking about your feelings and worries may help. Some people find that their relationships and family ties become stronger as they face problems and begin working through them together. You may feel that you can rely on your family for support and help more than before. If you find it difficult to talk to your relatives or partner it may help to get support from people outside your family, like your genetic counsellor, or a friend. You can also speak to our cancer support specialists. 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. Page 4 of 5

5 Making changes to your lifestyle There are various lifestyle factors that have been shown to reduce the risk of cancers developing in the general population, such as: not smoking taking regular physical exercise maintaining a healthy body weight limiting alcohol intake (up to 1 unit per day for women and no more than 2 units per day for men). eating a healthy balanced diet (high in fibre, fruit and vegetables and low in salt, fat and red and processed meat). There isn t good evidence about how much these factors affect people who have a strong family history of cancer. But some people say that following a healthy lifestyle makes them feel they are doing whatever they can to control their risk of cancer. There may also be specific factors that can affect your cancer risk. If you are thinking about ways of reducing your risk, it s worth discussing your ideas with your specialist so that you can take into account your personal circumstances. More information and support If you have any questions about cancer, ask Macmillan. If you need support, ask Macmillan. Or if you just want someone to talk to, ask Macmillan. Our cancer support specialists are here for everyone living with cancer, whatever you need. Call free on , Monday Friday, 9am 8pm We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. Macmillan cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. Macmillan Cancer Support Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ Page 5 of 5