Genetic counselling

At a genetic consultation, you can discuss your situation with someone trained in genetics. They will listen to your concerns and advise you on your risk of developing cancer. Your family history will be very important in working out your risk. Your genetic counsellor will ask about your family members’ experience of cancer and other health conditions. The more information you have about your family history to share at the consultation, the more you will get out of it.

Your genetic consultant or counsellor will then talk to you about managing your risk of cancer. This may include the options of screening or genetic testing. You don’t have to make any decisions straight away and they can help you think these choices through. Most counsellors send you a letter about what was covered in the meeting.

Genetic consultation

A genetic consultation is a discussion with a person trained in genetics. A genetic counsellor or consultant will listen to your concerns and advise you on your risk of developing cancer. They can discuss with you whether a genetic test might be appropriate for you and tell you the benefits and limitations of testing. They can also discuss possible ways of managing your risk.

The meeting may last 30-60 minutes. There probably won’t be a physical examination, but you might decide, together with your consultant or counsellor, to see a doctor or specialist nurse or to go for regular screening. Screening means testing to see if there are any abnormalities where there are no symptoms. It can help find a cancer earlier. There are different screening techniques for different types of cancer (see our information about bowel cancer, and breast and ovarian cancer).

Preparing for genetic counselling

Genetic counselling is a two-way process. The better prepared you are, the more you will get out of it. And you will also be better able to take part in the decisions that are made.

Knowing the following information can help you prepare for your initial clinic appointment:

  • the names and ages of all your family members
  • any cancers your relatives have had
  • the age they were diagnosed.

You’ll also need some information about family members who haven’t had cancer; for example, their ages and any serious illnesses they've had.

Some of this may be difficult – for example, if you have to speak to family members you haven’t been in touch with for a long time or if talking about these issues may bring back painful memories for you or your relatives. Other family members may also have different views about looking into a possible genetic cause of cancers within the family.

Don’t worry if you find it too hard, or impossible, to find out all the facts. Your counsellor will understand. There are cancer registries across the UK where doctors can check which cancers people have been diagnosed with in the last couple of decades, so they can use this to find out some of the information if necessary.

Your family history will be very important in working out the chance of there being a genetic susceptibility to cancer in your family. It’s a good idea to find out as much as you can about your family history of cancer. At the consultation, the genetics specialist will draw up a simple family tree, based on the information you give them. It will show all your close biological relatives and their respective illnesses (see the example below).

Genetics family tree
Genetics family tree

View a large version

Read a description of this image

Getting the most out of your consultation

Writing down your questions before you go to your consultation will help you remember what you want to ask. Here are some suggestions:

  • How do you assess my personal risk of getting a particular cancer?
  • How sure are you about my risk?
  • If there is a higher risk of cancer in my family, what are the options for screening or prevention?
  • Are there any risks associated with screening?
  • Is there anything I can do to reduce my risk?
  • Who else might be at risk in my family?
  • Do I need to tell my family? How do I approach the subject?
  • Should my children be told? Can they be tested?
  • What if I'm not at high risk of getting cancer? Will I get any follow-up?
  • What if I want a test or screening, but it is not offered to me?
  • Do I have to tell my insurance companies about my family history or about genetic tests?
    (You may want to read our information on the issues to consider before having a genetic test.)

It may be useful to have another person with you at the consultation, to share your thoughts with afterwards. You may choose to take a member of your family or a friend.

If you don’t understand what you've been told, tell your genetic counsellor so they can explain again. You can also speak to them another time if you have more questions later on. Most consultants or counsellors will send you a letter after the meeting that summarises all the important points covered in your session.

Some people with a very strong family history of breast, ovarian, bowel, womb or pancreatic cancer may be offered genetic testing. But this usually only happens if a mutation has already been found in another member of your family.

If you’ve had cancer, you may be asked to give a blood sample to try to identify a mutation.

You don’t have to decide to have a test, or make any other decisions, straight away. You can take all the time that you need to think things through. Then you can choose whether to have a genetic test, screening, or any other options your consultant suggests.

If you’re thought to be at high risk of developing cancer because of your family history, you will be offered appropriate screening, whether you choose to have a genetic test or not.

There is a directory of all the genetic centres in the UK on the British Society of Human Genetics website.

If you’re worried about your family history of breast or ovarian cancer

You may want to see your GP, particularly if you have:

  • three close blood relatives from the same side of the family who developed breast cancer at any age
  • two close relatives from the same side of the family who developed breast cancer under 60
  • one close relative who developed breast cancer aged 40 or younger
  • a close male relative with breast cancer
  • a close relative with breast cancer in both breasts.

The GP will assess your family history and may refer you to a family cancer clinic or for genetic counselling.

Breast cancer is rare in men but does happen. It's possible to inherit a breast cancer susceptibility gene from your father's side of the family. In some families men with a faulty BRCA2 gene may be at increased risk of breast and prostate cancer.

Some cancer susceptibility genes cause an increased risk of both breast and ovarian cancer. You should also be referred to a specialist if you have:

  • at least one close relative who has had ovarian cancer and one close relative diagnosed with breast cancer when they were under 50 (this can also be in the same person).
  • two cases of ovarian cancer in close relatives.

If you’re worried that breast and/or ovarian cancer may run in your family, our online tool OPERA can give you personalised information about your risk, which you might want to take to your doctor to discuss.

OPERA is based on guidance on familial breast cancer from the National Institute for Health and Clinical Excellence (NICE). OPERA isn’t intended to replace professional genetic counselling services, so if you’re concerned about your genetic risk you should still consult your doctor.

Genetic counselling

Genetic Counsellor Kelly Kohut explains genetic counselling and the issues surrounding genetics and cancer.

About our cancer information videos

Genetic counselling

Genetic Counsellor Kelly Kohut explains genetic counselling and the issues surrounding genetics and cancer.

About our cancer information videos

Back to Genetic conditions and inherited cancers

Inherited cancers

If a cancer occurs more often in a family than in the general population, some people in the family may have inherited a cancer susceptibility gene.

Inherited cancers: prostate cancer

Some cases of prostate cancer are linked to certain inherited cancer genes, which can run in families. There are other risks, some of which can be reduced.

Lynch syndrome

Lynch syndrome (LS) is a condition that can run in families. It increases the risk of developing bowel, womb and some other cancers.

Genetic testing

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

OPERA tool

OPERA is an online information tool for people concerned about their inherited risk of breast and/or ovarian cancer.

Having a high risk of cancer

Knowing you have an increased risk of cancer can be difficult. There are options for managing the risk and getting support.