Frequently Asked Questions
WHAT IS BRCA?
The name “BRCA” is an abbreviation for “BReast CAncer.” BRCA genes include BRCA1 and BRCA2. Everyone has two copies of these genes, one inherited from each parent. Their function is to prevent damage DNA in cells in specific parts of the body; they are known as tumour suppressor genes.
However, genetic mutations or changes to BRCA1 and BRCA2 genes have been found to impact a person’s chances of developing cancers such as breast, ovarian, prostate and other cancers.
Does BRCA cause cancer?
No. These genes help prevent cancer in specific parts of the body, they are tumour suppressor genes. However, if the BRCA1 or BRCA2 genes are not working properly (due to genetic change or mutation), then there is an increased risk for cancer.
To find out if you have a BRCA gene mutation, you can choose to be tested through The Screen Project or your primary health care provider if you meet provincial eligibility guidelines.
WHY SHOULD I CARE?
Understanding your genetics can help reduce the risk of developing cancer. Several preventable options are now available, including intensified screening for cancer(s) and preventative surgery. The options that are best suited for you will be made available to you through your genetic counsellor and/or your health care provider(s) after BRCA screening.
Since BRCA-mutation related diseases are passed on through genetics; understanding your risks can potentially affect your family.
What are my chances of having a BRCA gene mutation?
It is estimated that 1 in every 200 Canadians carries a mutation in one of the BRCA genes.
What are my chances of developing cancer from a BRCA mutation?
Scientists know that approximately 5-10% of all breast and ovarian cancers are hereditary, and due to these gene mutations. A mutation of the BRCA genes may mean:
If you are female and have the BRCA gene mutation:
- you will have up to an 80% lifetime risk for breast cancer.
- you will have up to 20-40% lifetime risk for ovarian cancer.
If you are male and have the BRCA gene mutation:
- you will have up to a 35% lifetime risk for prostate cancer.
Some BRCA-related cancers may still affect you regardless of your gender.
Why would I want to know if I have the BRCA mutation?
A BRCA mutation may explain the cause for cancer if you have already been diagnosed with cancer. You may also benefit from treatments tailored to your genetic makeup. Understanding your risk can also help reduce the risk of developing cancer, there are many management options available, such as detecting cancer at an early stage and identifying more targeted treatments.
Will knowing if I have a BRCA mutation prevent me from getting cancer?
Knowing if you have a BRCA gene mutation can help you and your doctor better understand your risk of developing certain types of cancers to help manage your risks with options such as intensified screening for cancer(s) and preventative surgery.
Do men need to know if they have a BRCA mutation?
Yes. Some BRCA-mutation related cancers may still affect you regardless of your gender. One example of a BRCA mutation related cancer in men is prostate cancer. The chances of developing this disease in a lifetime is 35% with a BRCA mutation.
How will my participation help?
Since this is a new way to extend BRCA testing in Canada, your participation will help us evaluate this way of reaching people and will also bring more awareness to BRCA screening.
The more people get screened for BRCA, the better our understanding will be of the frequency of BRCA mutations. The data gathered from this study will also help us to estimate the number of breast and ovarian cancers that could be prevented through population-based screening in Canada.
HOW DOES IT WORK?
Genetic screening, also called genetic testing, is a type of medical test that identifies changes in chromosomes, genes, or proteins derived from a sample that you provide.
The results of your BRCA genetic test will help determine if your genes or chromosomes may be linked to your current existing health conditions. It also helps determine your chance of developing and/or passing on BRCA-mutation related disorder(s).
How do I get my genes tested for BRCA mutations? Does it require a blood test?
Genetic testing through the Screen Project is based on a saliva sample that you provide. Details about this process are available in the consent form, which will be provided after you sign up. The saliva sample that you provide will be tested for the BRCA1 and BRCA2 genes.
A blood test is not necessary for BRCA testing through the Screen Project.
There are five steps involved in BRCA testing with the Screen Project, each of them with different processing times:
- If you are Canadian and 18 or older, complete the online study consent form & the short questionnaire.
- Our clinical study team will place your BRCA1 and BRCA2 genetic testing order through Invitae, the genetic testing company.
- A saliva collection kit will be sent to your address from Invitae. You will be contacted by Invitae to pay a fee of $250 USD (approximately $335 CAD).
- You will mail back your salvia sample with the kit provided to Invitae.
- You will be notified about your results through the Invitae patient portal and/or by the study genetic counsellor. You will have the option of requesting additional analysis of up to 43 more genes at no additional cost.
How long does it take?
It will take approximately one month to receive your results.
Am I eligible?
If you are Canadian and over the age of 18, you are eligible.
What do my results mean?
Each specific gene test including the BRCA tests will result in three possible results: negative, positive, or VUS.
Negative: means the gene looks normal and no changes or mutations were found. However, this does not mean that you are immune to cancer. A negative BRCA gene mutation means that you are not at an increased risk for BRCA-related cancers. Any of your future cancer screening recommendations should be based on your personal and family history, as well as the recommendations by your primary health care provider.
Positive: means a significant, cancer-causing change (called a ‘pathogenic’ mutation) has been found in your BRCA gene. Your BRCA genes may not function properly, thereby increasing your risk of cancer. A positive BRCA mutation is not a diagnosis of cancer. There will be risk reduction options that you will discuss with your genetic counsellor.
Variant of Uncertain Significance (VUS): means there is a minor variation found in the gene, but it is not clear at this time whether this particular variation causes an increased risk of cancer. Most VUSs are not cancer-causing since we all carry minor genetic changes in our genetic information. Your future cancer screening recommendations should be based on your personal and family history, as well as the recommendations by your primary health care provider.
Counselling will be provided to you if you test positive for BRCA mutations through Women’s College Hospital. Counselling is also available by request via Women’s College Hospital or Invitae (the genetic testing company) if you test negative or have inconclusive results.
What does it mean if I test positive for BRCA gene mutations?
Testing positive is not a diagnosis and it does not mean you will get cancer. You will speak with The Screen Project’s genetic counsellor to discuss your cancer risks and management options, as well as the next steps involved in your healthcare. The clinical research team at Women’s College Hospital will also refer you to your local genetics clinic to further review the cancer risks, management options and for future follow-up.
Your BRCA test results can help you make informed decisions about how to manage an increased risk of cancer. Your BRCA test results may also help you and your doctor make informed decisions about how to manage your history and future treatments of cancer.
My results came back negative, does this mean I won’t get cancer?
A negative BRCA results does not guarantee that you will be cancer free for the rest of your life.
Can the genetic test tell me more than just BRCA gene mutations?
You will have the option to request additional analysis of up to 43 more genes once you receive your BRCA test results, at no additional cost.
What does this mean for my family members?
Mutations in the BRCA1 and BRCA2 genes are inherited in an autosomal dominant partner, which means one copy of the mutated gene is sufficient to increase a person’s chance of developing cancer. Any of your biological children or siblings (both male and female) will have a 50/50 chance of carrying the same genetic mutation and predisposition to cancer. At least one of your biological parents may carry the same BRCA gene mutation, as well as some of your relatives.
However, this does not mean that they will get cancer. The knowledge from your genetic testing will help you understand your family’s risk, and in turn, can help them make informed decisions about their health.
WHAT ARE THE RISKS?
Is there any harm in genetic screening for BRCA mutations?
It’s important to know that there are potential risks associated with genetic testing of BRCA gene mutations. The main risks come from the knowledge of test results, which may have harmful effects on your emotional well-being. If you test positive for BRCA gene mutations, you may feel a whole range of emotions, including:
Counselling will be provided to you if you test positive for BRCA mutations through Women’s College Hospital. You may also request counselling even if you test negative for have inconclusive results, which will be provided by Women’s College Hospital or by Invitae.
Will the test results affect my insurance rates or my future employment?
There may be potential non-medical implications from your genetic test result. In the past, there had been concern about the impact of a positive genetic test result on future insurability and/or employability.
As of May 4, 2017, the Genetic Non-Discrimination Act (GNA), formerly known as Bill S-201 was passed into law in Canada. This law protects individuals from the use of genetic test results for means of discrimination by potential or existing insurers. Under this act, insurance providers cannot request or require that a person undergo genetic testing or disclose previous and/or future genetic test results in the clinical or research setting.
However, the Genetic Non-Discrimination Act does not prohibit insurers from using information about pre-existing or previously diagnosed medical conditions. Family history is also not protected by this act. There also may be circumstances that are not covered, as well as the rules and protections that may be different in other countries.