Why would I see a genetic counsellor?

Genetic counsellors can assess your personal and family medical history to determine if you might have an increased risk for developing hereditary breast and ovarian cancer. A genetic counsellor will provide information to help you make a decision about whether or not to have genetic testing. Genetic testing involves a blood test that looks for changes in certain genes that can cause hereditary cancer.

Is there a cost involved in seeing a genetic counsellor?

If you meet the eligibility criteria, there is no fee for genetic counselling as it is covered by provincial health insurance.

What should I expect from my genetic counselling appointment?

During your first appointment, the genetic counsellor will likely:

• Review your personal and family medical history in detail

• Talk to you about the differences between cancer that occurs by chance alone (sporadic) and cancer that runs in families (hereditary)

• Explain what hereditary breast and ovarian cancer is and how it is passed down in families

• Determine whether the cancers in your family may be related to hereditary breast and ovarian cancer

• Help you understand your risk for cancer and the risks for other members of your family

• Give you information about genetic testing and the possible results

• Discuss the benefits and limitations of genetic testing to help you make an informed decision. It is okay to choose not to have testing

• Review possible options for cancer risk management, including enhanced screening and surgery, regardless of whether you choose to have testing or not

• Help you find support services and make referrals to other medical specialists if needed, regardless of whether you choose to have testing or not.

How can I prepare for my genetic counselling appointment?

It is helpful to have as much information as possible about your personal and family medical history before meeting with a genetic counsellor. You can bring this information to your appointment or it may be requested by the genetic counselling clinic before your appointment. These are some questions you will be asked:

• Who in your family has had cancer?

• What type of cancer have they had?

• Where in the body did the cancer start?

• How old were they when they were first diagnosed?

• How old were they when they passed away?

• Has anyone in your family had genetic testing?

• You might want to consider bringing a family member or a friend to the appointment for support and to help you take notes because a lot of information will be reviewed. Recording the appointment with a voice recorder is another option, if your counsellor is okay with this

Sometimes the genetic counsellor will need to see the medical records or pathology reports relating to the cancer diagnoses of people in your family. Also, if someone in your family has had genetic testing, you should bring this test report to your appointment.

What type of questions should I ask?

You should always ask any questions that you have. The job of the genetic counsellor is to help you understand this information and how it may affect you and your family. These are some questions that may be helpful to review with your genetic counsellor:

• What are my chances of having a gene mutation in BRCA1 or BRCA2?

• How is a BRCA1 or BRCA2 gene mutation passed on in families?

• What are the possible results of my genetic test?

• What would the results mean for me and my family?

• If I chose not to have genetic testing, what cancer screening would be available to me?

• Who should I share my genetic test results with? Parents? Spouse? Children? Employer?

• How do I share my genetic test results?

• Can a positive genetic test result affect my ability to get insurance?

How can I arrange a genetic counselling appointment?

Genetic counselling clinics are usually located in hospitals or cancer centres and offer both genetic counselling and genetic testing by certified health care professionals. Not all hereditary breast and ovarian cancer genetic counselling clinics have the same name.

Clinics can go by various names, such as:

• Medical genetic services

• Hereditary cancer program

• Cancer risk assessment clinic

• Familial breast cancer clinic

• Preventative oncology

If you are interested in pursuing genetic counselling, there are steps you can take:

• Ask your family doctor for a referral

• If another family member has had genetic counselling, you can contact the same clinic. (Your information remains entirely confidential and will never be shared with anyone without your permission.)

• Call a genetic counselling clinic in your area. A list of genetic counselling clinics in each province can be found on the website of the Canadian Association of Genetic Counsellors. Not all genetic counselling clinics see individuals for hereditary breast and ovarian cancer so you would need to ask that when you call

What if I decide to have genetic testing?

In Canada, you need to qualify to be offered genetic testing. Some clinics make sure that you meet the criteria for testing before they even offer you genetic counselling. It is mandatory that you receive genetic counselling prior to receiving genetic testing if you want the testing to be covered by provincial health insurance.

If you want to have genetic testing and you meet the criteria required to qualify for genetic testing, your genetic counsellor will:

• Arrange for you to have a blood test

• Contact you when your test results are available. This can take anywhere from a few months to up to a year

• Arrange a follow-up appointment to explain the meaning of your test results. Discuss any changes to your cancer risk management as a result of the testing

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