If you are referred to a genetics specialist

The clinic may send you a family history form before they arrange an appointment. The form asks for information about cancer in your family. Try to give as much detail as you can.

A genetics specialist uses the form to assess your risk of cancer. They may decide you are unlikely to have a high risk of cancer and do not need an appointment to see them. They usually tell you this in a letter.

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

If you are given an appointment, you will meet a genetics specialist. This is called genetic counselling. During the meeting, you usually discuss:

  • whether you are likely to have a higher than average risk of certain types of cancer
  • whether a genetic test is possible and useful in your situation
  • the benefits and limits of genetic testing
  • ways of managing your cancer risk, including information about symptoms of cancer, cancer screening and risk-reducing treatments.

If you are referred to a specialist

You may wait for a few weeks or months before the clinic contacts you. They may send you a family history form to fill out 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 age they were diagnosed.

It is not always possible to fill out the form completely. 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 if 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 the cancers 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, they can only do this with their permission.

The first thing I did was complete the form. It would show whether there was a pattern that could indicate a mutation. It took some time to get names and dates right!

Daloni


If an inherited cancer gene is unlikely

The pattern of cancer in your family may not show that an inherited gene mutation is likely. In this case, the clinic may decide you are unlikely to have a high risk of cancer and 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 another diagnosis of cancer is made in your family in the future, talk to your GP again. This may give them more information to check your level of risk.


Genetic counselling

If you are given an appointment, you will meet a genetics specialist. This is called genetic counselling.

The meeting will last between 30 to 60 minutes. The genetics specialist will draw a diagram called a family tree. It will show all your close blood relatives and their illnesses. The genetics specialist uses this to assess your risk of developing cancer.

Example of a family tree
Example of a family tree

View a large version

Read a description of this image

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 a genetic test is possible and useful in your situation
  • the benefits and limits of genetic testing
  • ways of managing your cancer risk, including information about symptoms of cancer, cancer screening and risk-reducing treatments.

During the meeting, we went through my family history, and the specialist explained the implications of having a genetic test. I then had a blood sample taken for analysis.

Daloni


Getting the most out of your meeting

It is a good idea to write any questions down before you meet the genetics specialist.

Here are some 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 shall 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. You will usually get a letter after the meeting that lists all the important points.


Assessing your risk of cancer

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

This 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, they look 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 without a family history of cancer.

Moderate (raised) risk

Your risk of some cancer types is a bit higher than average. It is not likely there is an inherited cancer gene they can test you for.

High risk

You have a higher risk of developing some cancer types in your lifetime. This does not mean you will definitely get cancer. There may be an inherited cancer gene they can test for in your family.

Knowing your cancer risk can help you decide what to do to reduce it. This might include lifestyle changes, treatments to prevent cancer or screening to find it early.

Back to Family history and genetics

Cancer and genes

Gene changes (mutations) in a cell may mean the cell stops working normally. This can eventually cause cancer to develop.

Genetic testing

You will only be offered genetic testing if your family history suggests you may have inherited a cancer gene.