Genetic counselling

After your GP has referred you, the clinic should contact you within a few weeks. They may send you a family history form to complete before you have an appointment. This will usually ask you:

• the names and ages of your family members
• their relationship to you
• whether they are on your mother’s side or father’s side of the family
• what cancer types your relatives have had
• the ages they were diagnosed.

It is not always possible to fill out the form completely. For example, if you are adopted, you may not have access to your family history. It may be difficult to contact or speak to some of your family members. Sometimes talking about a family member or their illness is painful or upsetting. Some relatives may not want to know more about possible cancer risk in your family.

Do not worry if you cannot get all the facts. But try to complete the form as much as you can. The team at the genetics clinic will understand.

A genetics specialist uses the information you give to work out whether there might be an increased risk of cancer in your family. They may also use information from public records or a cancer registry to find out more about cancer in your family.

Sometimes the genetics specialist can find useful information about a relative’s cancer diagnosis in their health records. If the relative is alive, the genetics specialist can only do this with the relative’s permission.

The pattern of cancer in your family may show that an inherited gene variant is unlikely.

In this case, the clinic may decide you do not need an appointment to see them. They will usually tell you this in a letter. If you have not heard from the clinic after a few months, check with your GP.

If you have questions about their decision, you can call the genetics clinic. The letter they send usually includes a contact number for a genetics specialist.

If your family has another diagnosis of cancer in the future, talk to your GP again. This may give them more information to check your level of risk.

This means estimating your risk of getting certain cancers that may run in your family.

It happens at the genetics clinic when you meet the genetics specialist. Your GP may also do this when they decide whether to refer you to a genetics clinic.

To assess your risk, your GP or a genetics specialist looks at:

• how many of your relatives have had cancer
• what age they were when they got cancer
• how many of your relatives have not had cancer
• whether there have been any rare cancers in your family
• whether there have been groups of cancers in your family – for example, breast and ovarian cancer or bowel and womb cancer
• your age.

Based on this information, they may explain that your risk of getting cancer is one of the following:

• Average or low risk (population risk) – your risk is the same as, or close to, anyone in the general population.
• Moderate (raised) risk – your risk of some cancer types is a bit higher than average. It is not likely there is an inherited gene variant they can test you for.
• High risk – you have a higher risk of some cancer types in your lifetime. This does not mean you will definitely get cancer. You may be offered genetic testing to check for an inherited gene variant that may explain your family history of cancer.

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

• use plain English
• explain medical words
• use short sentences
• use illustrations to explain text
• structure the information clearly
• make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.