Family history screening at Haywards Heath Hospital

What is family history screening?

Family history screening is a way of finding out whether cancer running in your family could mean you have a higher than average risk of developing it yourself. A specialist looks at the pattern of cancer in your family and, if needed, can arrange extra monitoring or a genetic test.

Why might I need family history screening?

You might be offered family history screening if:

• you have close relatives on the same side of your family who've had the same or related types of cancer
• a relative was diagnosed with cancer at an unusually young age, for example under 40
• several closely related family members, in the same or different generations, have had cancer
• a relative is known to carry a faulty gene linked to cancer, such as BRCA1 or BRCA2.

What are the benefits of family history screening?

Most people who come forward are reassured, as most families are not at increased risk. For the small number who are, screening can pick this up early, so your specialist can plan appropriate care with you.

Depending on what's found, this might mean extra breast screening, a genetic test to confirm a gene change, or ways to lower your risk, such as medicines or surgery. Finding out early gives you and your specialist more options for managing your risk.

Are there different types of family history screening?

There are usually two stages, and not everyone needs both:

• Risk assessment: A specialist reviews your family history, sometimes using a questionnaire or a family tree, to work out your level of risk without testing your genes directly
• Genetic testing: If your family history is strong, or a relative has a known gene change, your DNA can be tested for specific genes linked to cancer, such as BRCA1, BRCA2, PALB2, ATM, CHEK2, RAD51C and RAD51D.

If you have Jewish ancestry, you may also be eligible for a dedicated NHS BRCA testing programme, regardless of your family history.

How do I prepare for family history screening?

• Find out as much as you can about which relatives have had cancer, on both sides of your family
• For each relative, try to note the type of cancer they had and roughly how old they were when diagnosed
• Start early if you can, as some of this information may take time to gather from relatives

If you're referred to a family history clinic, you'll usually be sent a questionnaire about your family history to complete and return, which is used to work out your level of risk.

What happens during family history screening?

1. Your GP asks about which relatives have had cancer, which side of the family they're on, the type of cancer, and their age at diagnosis
2. If your family history is considered strong enough, your GP refers you to a family history clinic or regional genetics service
3. At the clinic, a specialist or genetic counsellor looks at your family history in detail. Your first appointment may be face to face or over the phone
4. They work out your level of risk and whether you need a genetic test
5. These NHS services can also confirm cancer diagnoses reported in your family through national cancer records
6. If a genetic test is offered, this checks your DNA for specific gene changes linked to cancer.

What happens after family history screening?

• If your risk is calculated as close to that of the general population, you'll usually be reassured and told by letter, with no further action needed
• If your family history suggests a moderate or high risk, you may be offered extra breast screening, such as annual mammograms from around 40, sometimes alongside MRI scans
• If a gene change is found, your specialist will talk you through your options, which can include regular screening, medicines to lower your risk, or surgery
• Family members who share the relevant relatives may also be offered testing, since a gene change found in you could affect them too.

What are the risks of family history screening?

Family history screening itself carries no physical risk, but there are things worth thinking about:

• Emotional impact: Finding out you have a gene change can lead to ongoing worry about developing cancer
• Unclear results: Sometimes a test finds a gene change where it isn't clear whether it raises your cancer risk, which can be difficult to live with
• Family implications: You may need to tell relatives they could have inherited the same gene change, which can be hard for you and them
• Insurance: Insurers cannot ask about the result of a predictive genetic test for cancer, though they can still ask about your family history of cancer.