Genetic counselling means talking with a genetics specialist to help you understand a genetic condition that runs in your family.
Your GP may refer you for genetic counselling if they think your family history shows you might have a higher risk of developing cancer. There are different names for the services that offer genetic counselling. For example, you may be referred to a family cancer clinic or a cancer genetics clinic.
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.
If an inherited cancer gene is unlikely
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.
What happens during genetic counselling?
If you are given an appointment, you will meet a genetics specialist. This is called genetic counselling. The meeting will last 30 to 60 minutes. It may be face to face, by phone or by video call.
The genetics specialist will draw a diagram called a family tree. This shows all your close blood relatives, how they are related and their illnesses. The genetics specialist uses it to assess your risk of cancer.
Example of a family tree
During the meeting, you will be able to discuss:
- whether you are likely to have a higher-than-average risk of certain types of cancer
- whether genetic testing is possible and useful in your situation
- the benefits and limits of genetic testing
- ways of managing your cancer risk.
You will get information about symptoms of cancer, cancer screening and risk-reducing treatments.
Getting the most out of your meeting
You may have questions you want to ask the genetics specialist. It is a good idea to write them down before your appointment. Here are some examples of questions you may want to ask:
- What is my risk of getting a particular cancer?
- How sure are you about my risk?
- Is there anything I can do to reduce my risk?
- Who else might be at risk in my family?
- Do I need to tell anyone in my family?
- When and how should I tell my children?
- If I do not have a high risk of getting cancer, should I have any follow-up appointments?
- What should I do if I want a test or screening, but it is not offered to me?
- Do I have to tell insurance companies about my family history or genetic tests?
It may be helpful to bring someone with you to the meeting, such as a partner, family member or friend. You can share your thoughts afterwards.
If there is something you do not understand, tell your genetics specialist so they can explain. You can also contact them again if you have more questions. After the meeting, you will usually get a letter that lists all the important points.
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.
Even if you think you are ready for the news, it can be a shock to find out you have a higher risk of cancer. Your genetics specialist will support you and answer any questions you have. They will explain any ways your cancer risk can be reduced or managed. This might include:
- lifestyle changes
- risk-reducing treatments to prevent cancer developing
- screening to find cancer early.
You may want to know what is likely to happen so you can plan for your future. By using family history and genetic testing, a genetics specialist can only estimate levels of risk. They will not be able to say who will definitely get cancer or when they will develop it. You may still have questions that have no clear answers. You may need to think about what can help you cope with the uncertainty.
Many people say that knowing about a higher cancer risk helps them make healthier lifestyle decisions for their whole family. We have more information about cancer risk and living a healthy lifestyle.
If you are struggling to cope with a higher risk of cancer, talking about your feelings and worries may help. You can get support from your genetics specialist, and you might find it helps to talk to family and friends. You can also talk to our cancer support specialists free on 0808 808 00 00, or talk to others on our Online Community.
Below is a sample of the sources used in our family history and cancer information. If you would like more information about the sources we use, please contact us at firstname.lastname@example.org
Monahan KJ, Bradshaw N, Dolwani S, et al. Guidelines for the management of hereditary colorectal cancer from the British Society of Gastroenterology (BSG)/Association of Coloproctology of Great Britain and Ireland (ACPGBI)/United Kingdom Cancer Genetics Group (UKCGG). Gut. 2020; 69: 411–444. Available from DOI: 10.1136/gutjnl-2019-319915 (accessed October 2022).
NICE. Familial breast cancer: classification, care and managing breast cancer and related risks in people with a family history of breast cancer. Clinical guideline [CG164]. Last updated: 20 November 2019. Available from https://www.nice.org.uk/guidance/CG164 (accessed October 2022).
NICE. Molecular testing strategies for Lynch syndrome in people with colorectal cancer. Diagnostics guidance [DG27]. Published: 22 February 2017. Available from https://www.nice.org.uk/guidance/dg27 (accessed October 2022).
NICE. Testing strategies for Lynch syndrome in people with endometrial cancer. Diagnostics guidance [DG42]. Published: 28 October 2020. Available from https://www.nice.org.uk/guidance/dg42 (accessed October 2022).
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Marc Tischkowitz, Reader and Honorary Consultant Physician in Medical Genetics.
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