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1. Family history risk assessment
2. Who should be referred for assessment?
3. Waiting for an assessment
4. The risk assessment appointment
5. Finding out your risk level
6. What happens next?
7. Further support
1. Family history risk assessment
If you’re concerned about your family history of breast cancer, you may be eligible for a family history risk assessment.
This assessment will be able to tell you, based on your family history, what your risk of developing breast cancer may be.
The risk assessment is carried out at a specialist family history clinic or a regional genetics centre, depending on where you live.
You will usually need to be referred by your GP.
2. Who should be referred for assessment?
You should be referred for an assessment of your risk if:
- One first degree relative has had breast cancer before the age of 40
- One first degree male relative has had breast cancer at any age
- One first degree relative has had breast cancer in both breasts (bilateral breast cancer) at any age
- One first degree or second degree relative has had breast cancer at any age and one first degree or second degree relative has had ovarian cancer at any age
- Three or more first degree or second degree relatives have had breast cancer at any age
First degree relatives include your mother, father, brothers, sisters and your children.
Second degree relatives include aunts, uncles, grandparents, nieces and nephews.
You may also be referred if:
- You have Jewish ancestry
- You or a relative has had sarcoma (cancer in the connective tissues, for example in the muscle or bone) before the age of 45
- You or a relative has had glioma (a type of brain tumour) or childhood adrenal cortical cancer (cancer in the outer layer of the adrenal gland)
- Your family has had a number of cancers at a young age
- Two or more relatives on your father's side of the family have had breast cancer
3. Waiting for an assessment
Being referred to a family history clinic for assessment can be a worrying time.
It’s natural to feel anxious when you’re waiting for a risk assessment.
You’ll probably have your own way of managing your anxiety during this time of uncertainty, such as keeping busy or talking to family and friends.
If you would like to talk to someone about any concerns, you can call our free Helpline on 0808 800 6000.
4. The risk assessment appointment
Try to find out as much about your family history as you can from other relatives before your appointment.
You may be asked to complete a questionnaire about your family history before being offered an appointment or you may be asked for this information at your appointment.
The nurse or genetic specialist looking at your family history will understand if you cannot find all the relevant information.
Information you’ll be asked at your appointment
At the appointment you’ll be asked about any type of cancer in all your blood relatives on both sides of your family.
This includes your mother and father, sons and daughters, brothers and sisters, aunts and uncles, nieces and nephews, cousins, grandparents, great uncles and great aunts.
You’ll be asked about:
- Your known family history on your mother’s and father’s sides, including family members who have not had cancer, and the age at which any of them died
- How the people diagnosed with cancer are related to you
- How the people diagnosed with cancer are related to each other
- What type of cancer each person had
- How old each person was when diagnosed
- Whether the same person has had more than one cancer (including cancer in both breasts)
- Your ethnic background
- Your own breast cancer diagnosis if you have been diagnosed
If you don’t have information about your family history or your blood relatives, your risk assessment can only be based on whatever information you have.
5. Finding out your risk level
At the end of your appointment, if your specialist team has enough information, you’ll be told what your level of risk is based on your family history.
There are three possible levels of risk for breast cancer.
General population risk (average or near population risk)
General population risk means the risk of getting breast cancer is the same as, or very similar to, that of the general population.
One in seven women in the UK will develop breast cancer in their lifetime.
If only one person in your family has been diagnosed with breast cancer over the age of 40, you’re likely to be at general population risk.
Moderate risk (familial or raised risk)
People in this category are at higher risk than the general population. However, it’s still more likely they will not get breast cancer, despite their family history.
Someone at moderate risk may have several relatives with breast cancer but no obvious pattern of the disease. Although breast cancer might affect people in several generations of their family, they tend to be affected at older ages.
A person may also be considered at moderate risk if one close relative developed breast cancer under the age of 40.
High risk (hereditary or increased risk)
People in this category are more likely than those at moderate risk to develop breast cancer, but this does not mean they definitely will.
Someone at high risk will usually have had several close relatives on their mother’s or father’s side diagnosed with breast cancer, ovarian cancer or both over several generations (for example grandmother, mother and daughter). They will often have been diagnosed at a younger age, often under the age of 50.
6. What happens next?
For people at general population risk
If you’re told you’re at general population risk, you should be given information about routine breast screening. In the UK, women aged 50 to their 71st birthday are invited for a mammogram every three years.
You should also be told about the importance of being breast aware and reporting any possible signs of breast cancer.
It’s important to go back to your GP if your family history changes – for example if another relative develops breast or ovarian cancer.
For people at moderate risk
People at moderate risk are likely to be offered regular breast screening. Screening for woman at moderate risk is offered from the age of 40, which is earlier than routine breast screening.
Your specialist team may also discuss with you the possibility of drug treatments to reduce the risk of breast cancer.
You can read more about these options in our booklet Family history of breast cancer: managing your risk.
It’s important to go back to your GP if your family history changes, for example if another relative develops breast cancer or ovarian cancer.
For people at high risk
If you’re at high risk, you’ll be given information on the options available to you, including breast screening and risk-reducing surgery or drug treatments.
You can read more about these options in our booklet Family history of breast cancer: managing your risk.
You’ll be offered genetic counselling, and the possibility of genetic testing will be discussed.
Genetic counselling
If you’re considered to be at high risk of developing breast cancer, you’ll be offered a genetic counselling appointment at a regional genetics centre.
Genetic counselling can also be offered if you have an unusual family history or if further investigation into your family history would be helpful in understanding your risk.
You’ll meet with a genetic counsellor (a healthcare professional with specialist knowledge of genetics and inherited illnesses) or a clinical geneticist (a doctor with specialist training in genetics).
They can help you understand more about your family history and your risk of developing breast cancer and possibly other cancers.
They can also tell you about the options that may be available to you, such as:
- Genetic testing
- Breast screening
- Drug treatments to reduce the risk of cancer developing
- Surgery to reduce the risk of developing cancer
You can read more about these options in our booklet Family history of breast cancer: managing your risk.
This may be done over several visits.
For some people, genetic counselling can be a very emotional time.
You may feel anxious talking about your risk and what this means for you and those around you.
Your genetics team will have a lot of experience talking through the issues involved and will be able to offer you support if you need it.
7. Further support
Finding out that you’re at moderate or high risk can cause many different emotions.
You may feel more anxious about your breast health, or afraid of what the future holds for you and your family.
All cancer genetics clinics have genetic counsellors who you can talk to about how you’re feeling.
Breast Cancer Now’s Helpline and Ask Our Nurses email service can provide support and information to anyone concerned about their family history.
Our Someone Like Me service can put you in touch with a trained volunteer who has had experience of the issues you’re facing, whether you have a family history or you’re considering genetic testing.
Talking privately over the phone, where and when it suits you, means you can ask any questions you like and talk openly without worrying about the feelings of the person listening.
Some of our volunteers can also chat by email.
You may also find it helpful to read our booklet Family history of breast cancer: managing your risk.