Genetic counselling

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

You might find it helpful to watch our video of Wendy telling her story of genetic testing|, and its effects on her and her family.

Genetic consultation Back to top

A genetic counsellor or consultant 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 with you 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 bowel cancer|, breast cancer  |and ovarian cancer|).

Preparing for genetic counselling Back to top

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, such as 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 genetic 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). 

 

Getting the most out of your consultation Back to top

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 someone 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.

Assessing your risk of getting cancer Back to top

Assessing your personal risk of cancer is complex. Having a higher risk means you’re more likely to get cancer than people in the general population. But, even if you have a cancer susceptibility gene, this doesn’t mean that you will definitely get cancer. Certain questions help to assess your cancer risk:

• How many of your relatives have been diagnosed with cancer?
• What age were they when they were diagnosed?
• How many relatives have not had cancer?
• Have there been any rare cancers in your family?
• Have there been certain combinations of cancers in your family, such as bowel and womb cancer, cancer in both breasts, breast and ovarian cancer, or breast cancer in a male relative?
• How old are you?

Everybody lives with some risk of developing cancer. Even if you aren’t at increased risk, you still have the same chance of getting cancer as the general population. Most people who have cancer don’t have one of the known cancer susceptibility genes.

Assessing your risk of cancer may help you and your doctor to decide what level of prevention and screening is sensible for you. For example, if you’re at significantly increased risk of bowel cancer, you’ll be offered regular tests to check your bowel for pre-cancerous changes (bowel screening|).