Coping with a high risk of cancer

You may be told you have a high risk of developing a certain type of cancer because:

  • genetic testing shows you have a cancer gene mutation
  • the pattern of cancer in your family shows this is likely.

This may be difficult for you and your family to cope with. Some people feel like they are being told they already have cancer. Others find that knowing the result helps them make choices to reduce their risk.

Your genetics specialist will explain ways you can manage your cancer risk, such as:

  • screening tests to find and treat cancer early
  • surgery to remove the tissues that are at risk of getting cancer, for example the breasts or ovaries
  • taking a drug to reduce the risk of certain types of cancer (chemoprevention)
  • having a healthy lifestyle.

Your genetics specialist will explain any side effects or disadvantages. Some risk-reducing treatments can affect your ability to get pregnant.

Your specialist can also give you information and support about:

  • talking to your children about cancer and genes
  • planning a family if you have a cancer gene mutation.

Living with a high risk of cancer

You may be told you have a high risk of developing a certain type of cancer because:

  • you had a genetic test that found an inherited cancer gene
  • the pattern of cancer in your family is likely to be caused by an unknown inherited cancer gene.

Even if you think you are prepared for this news, hearing it can come as a shock. Some people feel like they are being told they already have cancer. Others find that knowing the result helps them make choices to reduce their risk.

Living with uncertainty

It is natural to want to know what is likely to happen, so you can plan for your future. Family history and genetic testing only lets us estimate levels of risk. It does not tell us who will definitely get cancer or when they will develop it. You may still have questions that have no clear answers. You may have to find ways to cope with the unknowns (see below).

Your family

Having an inherited cancer risk can affect relationships in a family. Genetic tests may show that some family members have a higher risk and others do not. This can make people feel angry or guilty.

Some families find their relationships become stronger. You may feel closer to some relatives or find you can rely on each other more than before.

Many people say that knowing about a higher cancer risk helps them make healthier lifestyle decisions for their whole family. We have more information about cancer risk and living a healthy lifestyle.

Getting support

If you are struggling to cope with a high risk of cancer, talking about your feelings and worries may help. You can get support from your genetics specialist or your family and friends. You can also talk to our cancer support specialists on 0808 808 00 00, or share your thoughts with members of our Online Community.

My sister and her daughters are making the steps to protect themselves. I tell myself “knowledge is power,” and it feels true in my head and in my heart.

Daloni


Talking to children

Children in families with a gene mutation that can cause cancer in childhood or teenage years are offered genetic testing at an early age. This is so they can have screening or treatments to prevent cancer if needed.

But most inherited cancer genes do not increase the risk of cancer until adulthood. Usually, children in families with these types of cancer gene wait until they are older to think about genetic testing. This can make it harder for parents to decide when to tell them there is an inherited cancer gene in the family.

There are no rules about this. Every family is different. You know your child best and understand what is right for them. In general, parents say they think about their child’s age, maturity and emotional state.

Some parents tell their child soon after finding out their family is affected. Other parents wait because they feel their child is too young, or it is not the right time because there are other things happening.

Here are some reasons parents give for telling a child:

  • They want to be honest and open.
  • They worry the child will find out by chance, for example by overhearing conversations.
  • They want to help the child understand why a parent is having risk-reducing treatment or screening tests.
  • They want to help the child understand and talk about cancer in the family. This can involve answering their questions and anything they do not understand.
  • They want to help the child understand how this may affect them in the future.

Preparing to talk to children

Before you talk to your child, you may want to:

  • give yourself time to adjust to the news first
  • decide whether you want to talk to your child alone or with someone else.

What to tell children

Think about what you want your child to understand and what you think they can cope with. The following tips may help:

  • Younger children only need a small amount of information. They often understand things slowly over time.
  • Teenagers usually want to know more and ask more questions.
  • Use language and words your child can understand. But try to use the correct words when you need to. For example, saying ‘boob job’ for mastectomy may seem less worrying. But it can also mean a child does not understand the seriousness of the operation.
  • Talking to your child during an everyday activity, such as a walk, may help them feel more relaxed.
  • Ask your child to tell you what they understand. If they have not understood something, you can explain again.
  • Ask them how they feel and talk about how you feel.
  • Ask them if they have questions.

Try to include positive messages when you talk with your child. You may find the following information useful:

  • Having a gene mutation does not mean you have cancer or that you will definitely get cancer.
  • Knowing you have the gene mutation gives you choices, like having screening tests or treatments. This can help reduce your risk.
  • Your child may not have the gene mutation, but they can find out when they are ready.
  • When your child is older, there may be even better treatments available.

Answering questions

It is important that your child feels you are okay to answer questions. You can help by encouraging them to ask. Reassure them that you are happy to talk about it again. Let them know they can ask questions any time.

It is easy to give too much information. Always check what your child wants to know. Ask them ‘What makes you ask that question?’ before trying to answer.

Many children and young people do not ask questions because they are worried about upsetting their parents. Some may find it easier to write their questions instead of asking you face to face. There may also be another person you both trust who they can talk to.

Your genetics specialist can give you more information about talking to children and teenagers about your genetic test results.

I dreaded telling my daughters. Meeting with a clinical psychologist helped. I decided to tell them, even though they cannot be tested yet. It’s an ongoing conversation, not a one-off.

Daloni


Managing your cancer risk

Screening to find cancer early

Screening looks for early signs of cancer or for changes that happen before a cancer develops. There are different screening tests for different types of cancer.

Most types of screening aim to find cancers at an early stage when they are easier to treat. Some types of screening look for abnormal changes in cells that can develop into cancer. For example, bowel screening checks for pre-cancerous growths called polyps. This means you can have treatment to remove the growth before cancer develops.

Surgery to reduce your risk

Some people with a high cancer risk decide to have risk-reducing surgery. This means removing the tissues that are at risk of getting cancer, for example the breasts or ovaries. This type of surgery is usually only offered to people with a very high risk, such as people who have inherited certain cancer gene mutations. Surgery greatly reduces the risk of cancer, but it does not get rid of it completely.

No one can tell you if risk-reducing surgery is the right or wrong thing for you to do. It is your choice. It may depend on:

  • your age
  • whether you know for sure that you have an inherited cancer gene
  • how you feel about the cancer risk and the treatment
  • how you feel about other family members’ experiences of cancer and treatment
  • if you still want to have children (if surgery involves removing the ovaries or womb).

If you are thinking about having risk-reducing surgery, take your time to decide. You can get help and advice from doctors and counsellors.

Surgery has risks and possible side effects. It is helpful to discuss the benefits and disadvantages with your doctor. You may also want to talk it over with your family and other people you trust before making your decision.

If you decide to have risk-reducing surgery, you may also need to decide at what age to have it. Your genetics specialist can explain more, based on the type of gene mutation you have and the ages when your family members developed cancer. In general, the younger you are when you have risk-reducing surgery, the more likely it is to prevent cancer.

Chemoprevention

Chemoprevention means taking a drug to reduce the risk of certain types of cancer. Some women who have a high risk of breast cancer may take anti-oestrogen tablets to reduce their risk. People with Lynch syndrome may take aspirin to reduce their risk of bowel cancer developing.

Risk-reducing drugs may cause side effects and occasionally may cause serious complications. It is important to discuss the benefits and disadvantages with your doctor.

Clinical trials

If you know you have an increased risk of getting cancer, you may be able to join a clinical trial. These look into genetic causes of cancer or ways of preventing it. Taking part in a clinical trial is completely up to you. Ask your genetics specialist for more information.


Risk-reducing treatment and fertility

Some risk-reducing treatments can affect your ability to get pregnant (fertility).

Surgery to remove the womb and ovaries will mean you cannot get pregnant. Chemoprevention for breast cancer may harm a developing baby, so your doctor will advise you not to become pregnant when taking this treatment. People usually take it for 5 years, which means you have less time to become pregnant.

If you are considering risk-reducing treatments that could affect your fertility, you can talk with your genetics specialist about this. You may think about starting your family earlier than you had planned. You can ask your doctor about ways of preserving your fertility. You can also ask to see a fertility specialist for more advice.


Planning a family

If you have an inherited cancer gene, there is a 1 in 2 (50%) chance that any child you have could inherit it from you. Your genetics specialist can talk to you about this if you have questions.

Many people choose to have children and accept that the child may have a higher cancer risk. They may feel the child will have the same or perhaps better ways to manage that risk when they grow up.

If you have an inherited cancer gene and want to be sure you do not pass it on to any children, sometimes other options are available.

Pre-implantation genetic diagnosis (PGD)

This test is done during in vitro fertilisation (IVF). Doctors collect egg and sperm cells from you and a partner. They use these to create embryos in the laboratory. They test these embryos for the cancer gene (PGD). The fertility specialist then transfers an embryo that does not have the cancer gene into the woman’s womb.

PGD is not available to everyone. There are age limits, and funding may not always be available. PGD is only done in a few centres in the UK. You may need to travel some distance to have it. You can find more about PGD on the Human Fertilisation and Embryology Authority’s website.

Egg or sperm donation

Some couples decide to use:

  • donor eggs (if the woman has the gene mutation)
  • donor sperm (if the man has the gene mutation).

Prenatal testing

Some couples choose to have a test early on during the pregnancy to check for the cancer gene. The couple can decide whether to continue with the pregnancy when they know the results.


Health and lifestyle

There may be factors in your lifestyle that affect your cancer risk. For someone with no family history of cancer, the lifestyle factors that can help reduce their risk of cancer include:

Many people who find out they have a high cancer risk decide to improve their lifestyle in these ways. Some people find a healthy lifestyle makes them feel they are doing everything they can to control their cancer risk.

There is not always clear evidence about how much these factors affect cancer risk in people with a family history of cancer. But there is strong evidence they improve your general health and well-being. Ask your genetics specialist for advice about your risks. Your genetics specialist, GP or practice nurse can give you more information about healthy living.

I’ve got a mountain bike, which I quite enjoy. I don’t go too far though. The longest I’ve ridden is about 10 miles, but that’s still good. And, it’s great fun too!

Ray

Back to Family history and genetics

Cancer and genes

Gene changes (mutations) in a cell may mean the cell stops working normally. This can eventually cause cancer to develop.

Genetic testing

You will only be offered genetic testing if your family history suggests you may have inherited a cancer gene.