Having a high risk of cancer

If you have a family history of cancer or if a genetic test has found an inherited cancer gene, you might be told that you have a higher risk of developing cancer. You may find this difficult to cope with. You may feel uncertain and worried about your future. Or you may feel relieved to know, and to be able to consider, your options.

Genetic testing doesn’t always give definite answers. Even if you do have an inherited cancer gene, this doesn’t definitely mean that you will develop cancer. Living with uncertainty can be hard. Talking to family, friends and professionals about how you feel may be helpful.

If there is an inherited cancer gene mutation in the family, you might worry about whether to tell your children, and what to say. This may depend on their age and maturity.

If you are worried about your risk of cancer, talk to your healthcare team about options to manage or reduce your risk. These include screening for early signs of cancer, or risk-reducing treatments. You may also want to find ways to improve your health and lifestyle.

Coping with a high risk of cancer

You may be told you have a high risk of developing a certain type of cancer. This may be because you had a genetic test that found an inherited cancer gene. Or it may be because of your family history.

Knowing that you and some of your family have a higher cancer risk can be difficult to accept. Even if you think you have prepared for this news, having it confirmed can come as a shock. To some people this may feel like being told they already have cancer. To others, knowing may feel more empowering and help them make choices to lessen their risk.


Living with uncertainty

Genetic testing doesn’t tell us who will definitely get cancer. This can cause anxiety. It’s natural to want to know what is likely to happen so that you can plan for your future. But definite answers are often not 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 difficult. Talking about your feelings and worries may help. You can also get support from outside your family and friends. You can talk to a genetic counsellor and to our cancer support specialists on 0808 808 00 00. Or you can share your thoughts with members of our online community.

Relationships in your family can feel strained when you’re coping with inherited cancer risk. Genetic tests may show that some family members are at an increased risk and others aren’t. This can make people feel guilty or embarrassed for different reasons.

Inherited cancer can be a difficult issue to come to terms with. Some people find their relationships and family ties become stronger. You may feel that you can rely on your family for support more than you could before.


Talking to children about a cancer gene in the family

Many parents have concerns about when to tell their children about an inherited cancer gene mutation in the family.

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

But, most inherited cancer genes don’t increase the risk of cancer until adulthood. This can make it difficult to decide when to tell children or teenagers. There aren’t any set rules about this. Every family is unique. You know your children best and what feels right for them.

In general, parents say they consider their children’s age, maturity and emotional state when deciding when to share their test results.

Many parents tell their children about their genetic test results within a year of having a positive genetic test. Other parents may feel their child is too young or it may not be the right time because of other things going on in the family.

Reasons parents give for telling their children include:

  • wanting to be honest and open with their child/children 
  • avoiding their child/children finding out by chance, for example by overhearing conversations 
  • helping their child/children understand if a parent is planning to have risk-reducing treatment or screening tests 
  • finding out what their child/children are thinking about cancer in their family, answering their questions and correcting any misunderstandings 
  • helping the child/children understand how this may affect some of their decisions in the future, such as planning when to start a family – this is something girls may need to consider if there is a BRCA1 or BRCA2 gene in family. 

Preparing to talk to children

Before you talk to your children you may want to:

  • give yourself time to adjust to the news first 
  • decide whether you want to talk to your children alone or with your partner (if you have one). 

What to tell children

Before talking to your children, you may want to consider the following:

  • Younger children only need a small amount of information. They come to understand things gradually over time. 
  • Teenagers usually want to know more and ask more questions. 
  • Using language appropriate to your child’s age will help them understand the situation. 
  • Talking to children during an everyday activity such as a walk may help them feel more relaxed. 
  • Using the correct words is important. Some parents think using expressions such as ‘boob job’ for mastectomy is less worrying for children. But this can mean children don’t understand the seriousness of the operation. 

Include positive messages such as:

  • Your test result doesn’t mean you have cancer or will definitely get cancer. 
  • Knowing you have the gene gives you choices, like having screening tests or treatments that can help reduce your risk.
  • Your children are as likely not to have the gene as to have it. 
  • When your children are older there may be even better treatments available. 
  • Ask children to tell you what they understand so that if they’ve misunderstood something you can put them right. 
  • Discuss their feelings. 

Ask your children if they have questions.

Answering questions

It’s important that your children feel that you are willing to answer their questions. You can help by giving them permission to ask questions. And you can reassure them that you are willing to talk. Many children and young people do not ask questions because they fear they might upset their parents.

It’s 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.

Let your children know they can always speak to you again if they have questions or are worried about anything.

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


Managing your cancer risk

Early detection of cancer – screening

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

Most types of cancer screening aim to detect cancers at an early stage when they are easier to treat. But some types of screening can detect pre-cancerous cell changes. For example, bowel screening can find pre-cancerous growths. This means you can have treatment to remove the growth before cancer develops.

Reducing your risk of cancer

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, for example the breasts or ovaries. This type of surgery is only offered to people with a very high risk, such as those who have inherited certain cancer gene mutations. Although surgery greatly reduces the risk of cancer, it does not get rid of it entirely.

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

  • your age 
  • whether you know for sure that you have a cancer gene mutation 
  • how you feel 
  • if you still want to have children (if surgery involves removing the ovaries or womb). 

If you’re considering 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’s helpful to discuss the advantages 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’ll need to think about when to have it. This will depend on what age the cancer may develop. Your genetic counsellor can tell you about how your risk of getting cancer changes with age. This depends on the cancer gene mutation you have. It also takes into account the ages at which 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 consists of taking a drug to reduce the risk of certain types of cancer. Some women at high risk of inherited 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. So it’s important you discuss the advantages and disadvantages with your doctor.

Research trials

If you know that you have an increased risk of getting cancer, you may be able to join a research trial. These look into genetic causes of cancer or ways of preventing it. Taking part in a research trial is completely up to you.

Fertility

Some risk-reducing treatments for breast or ovarian cancer can have an effect on fertility.

Surgery to remove the ovaries before the menopause will make you infertile. If you take drug treatments to reduce the risk of breast cancer, you’ll usually take these for five years. You can’t become pregnant during this time. This can reduce the number of years you have to become pregnant.

If you are considering risk reducing treatments that could affect your fertility you can discuss these issues with your genetics specialist. You may think about starting and completing your family earlier than you would otherwise have done. You can ask your doctor about ways of preserving fertility. You can also ask to see a fertility specialist for further advice.

Planning a family

For most inherited gene mutations, there is a 1 in 2 chance (50%) that each of your children could inherit the gene mutation. If you have questions about the risk for any children you may have, your genetics specialist can discuss this with you.

Most people choose to have their family without any intervention. Screening, risk-reducing treatments and cancer treatments are likely to continue to improve.

If you want to avoid passing on a cancer gene mutation, other options are available:

Pre-implantation genetic diagnosis (PGD)

This procedure involves in vitro fertilisation (IVF). Doctors take egg and sperm cells from the couple. They then create embryos outside the woman’s body. These embryos are tested for the cancer gene mutation in the family. The fertility specialist then implants an embryo that doesn’t have the cancer gene mutation 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 carried out in a few centres in the UK. You may need to travel some distance to have it. You can find information about PGD on the Guy's and St Thomas' Centre website.

Egg or sperm donation

Some couples use donor eggs (if the woman has the cancer gene mutation) or donor sperm (if the man has the cancer gene mutation).

Prenatal testing

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


Health and lifestyle

Many people who find out they are at an increased risk of cancer look for ways to improve their health and lifestyle.

There may be specific lifestyle factors that can affect your cancer risk. Ask your specialist for advice to fit your situation.

There are lifestyle factors that can reduce the risk of cancers developing in the general population, such as:

  • not smoking
  • doing regular physical exercise
  • maintaining a healthy body weight
  • eating a healthy balanced diet (high in fibre, fruit and vegetables and low in salt, fat and red and processed meat)
  • limiting alcohol content.

NHS guidelines suggest that both men and women should:

  • not regularly drink more than 14 units of alcohol in a week
  • spread the alcohol units they drink in a week over three or more days
  • try to have several alcohol-free days every week.

A unit of alcohol is half a pint of ordinary strength beer, lager or cider, one small glass (125ml) of wine, or a single measure (25ml) of spirits.

There is more information about alcohol and drinking guidelines at drinkaware.co.uk

There isn’t clear evidence about how much these factors affect cancer risk in people with a family history of cancer. But some people say living a healthy lifestyle makes them feel they are doing what they can to control their risk of cancer.