Getting your genetic test results

Getting the results of a genetic test to find out whether you have an inherited faulty gene that increases the risk of cancer is likely to be an emotional time. If the test was negative and found that you don’t have a faulty gene, you will probably feel a huge sense of relief. If you do have a faulty gene, you may feel very shocked, even though you knew that the test could be positive. You will probably be trying to work out what it all means and what to do next.

What if the test doesn’t find a faulty gene?

If your family has a known faulty gene and your test comes back negative, it means that you aren’t carrying that particular faulty gene – so it is good news.

It doesn’t mean that you definitely won’t get cancer though. Your risk is the same as everyone else. You can still reduce your risk by choosing a healthy lifestyle.

If the test doesn’t find a faulty gene but you have a strong family history of cancer, it could be that you don’t have one of the known high risk genes. But you could still be at higher risk of particular cancers than other people in the general population.

If this happens, you and your genetics specialist will work out the best way to keep a check on you with regular tests to find cancers early if you do develop one. The uncertainty of this can be very difficult to cope with and your genetics specialist can advise and support you.

What if the test does find a faulty gene?

Most people who have a positive result will feel a range of emotions including resentment, anger, worry, and anxiety. This is understandable. It can be difficult to find out that you have an increased risk of developing cancer. Some people find that it helps to talk to their family members about their feelings. Other people may prefer to talk to a counsellor.

You can talk to your doctor or genetic counsellor to find out about how much your risk of cancer is increased. They can tell you what check ups you need and how often you will need to have them. It is important to remember that not everyone who has a faulty gene goes on to develop cancer.

Whatever your situation, you can help to reduce your risk by choosing a healthy lifestyle.

Telling your relatives

You may be worried about which family members to tell and how to tell them. Your genetic counsellor can help you work out the best way to do this. Some clinics have prepared letters that you can send out to relatives but you may prefer to tell people face to face. Or you might want to do a mix of both, depending on which relative it is and your relationship with them.

Your relatives’ reactions may vary. It may be a shock to them if they hadn’t thought about having a family history of cancer. Some people may choose to ignore the result and may even find it difficult to talk to you afterwards. Others will be glad that you have warned them about the possibility that they may have a faulty gene and will then want to have a test themselves.

If other members of your family had the test at the same time as you, you may also be trying to cope with their results. It is quite common for members of the family who find that they don’t have a gene fault to feel guilty if other members are told that they do have a gene fault.

At the genetic clinic you may have the chance to talk together as a family about how you are feeling. You will also have the opportunity to carry on with individual counselling. You can to go back at a later date if you don’t want counselling straight away.

Options if you have an increased risk of cancer

The options available to you if you have an increased risk of cancer will depend on the gene fault that you have and which types of cancer you are at risk of developing.

Some types of cancer can be found early through regular screening and your doctor may recommend this for you. For some types of gene fault you may be able to have medicines or surgery to reduce your risk.

Regular screening to detect cancer

Screening doesn’t prevent cancer but aims to catch it at its very earliest stage. The type of screening, when it starts, and how often you have it will depend on the type of cancer you are at risk of getting.

The following links take you information about screening for people at high risk of particular cancers:

Treatment to reduce your risk

You may be able to have treatment to reduce your risk of getting cancer. The options open to you may include surgery or may include medicines that reduce cancer risk. This is possible for some types of cancer where there is a known faulty gene.

If treatment is available, the timing of it will be affected by the type of cancer you are at risk of developing and the particular gene fault you have. For some cancers, your risk may not be significantly increased until you are in your 40s. For other types of cancer you may need treatment earlier.

Surgery to reduce cancer risk

The main risk reducing treatment is surgery to remove the part of the body at risk of developing cancer. For example, women who have one of the faulty BRCA genes may choose to have both breasts removed with breast reconstructionThis is called preventive mastectomy, risk reducing breast surgery, or prophylactic mastectomy. Or women may have their ovaries and fallopian tubes  Open a glossary itemremoved (called prophylactic oophorectomy or risk reducing ovarian surgery). Some women choose to have both their ovaries and their breasts removed.

Treatment to reduce your risk of bowel cancer would be an operation to remove your large bowel (prophylactic colectomy).

Risk reducing surgery doesn’t necessarily stop you getting cancer completely. Nobody can guarantee that. But it will significantly reduce your risk of getting a particular type of cancer.

Surgery can change how you feel about yourself. For some people, knowing that they have reduced their risk makes them feel more confident and happier. For others the changes in their body, whether visible or not, are very difficult to cope with. It is important to try to think about how you will feel if you do have treatment and how you may feel if you don’t.

Medicines to reduce cancer risk

If you have an increased risk of breast cancer another option could be to take medicines to prevent breast cancer. This is called chemoprevention.

Find out about taking medicines to lower your risk.

Deciding whether to have risk reducing treatment

Choosing to have treatment to reduce your risk of cancer is a very personal decision. Before you decide to have any treatment to reduce your risk, it is worth thinking about and finding out about the following questions:

  • What treatment options are available to you?
  • How much will treatment reduce your risk of developing cancer?
  • How do you feel about having treatment?
  • What does the treatment involve?
  • What are the immediate and long term side effects?
  • Can side effects be controlled?
  • When should you have the treatment?
  • Will the treatment affect your fertility?
  • Can you time your preventative treatment so that you can have a family first?

Finding out that you have a gene fault may make you think about the choices you make in your life. For example:

  • You may decide to have children earlier than you had planned, before having your ovaries removed
  • You may want to have tests before or during pregnancy to avoid having a child with the faulty gene
  • It may affect the choices you make about work and your career.

Your genetic counsellor or specialist nurse can talk through your options and help you decide what is right for you.

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