Busting the myths about BRCA

Navigating the world of genetic testing can be very confusing and scary at times.  That's why we're addressing some of the common myths surrounding BRCA testing.

Truth: Finding out you have a BRCA mutation is a life-changing thing, but it is not a death sentence! The precise risks vary depending on the particular mutation, and whether you are male or female. They are listed here but it’s important to remember these risks are for your whole lifetime.

Finding out you have a BRCA mutation can mean you have different options for treatment if you do have cancer (click here for more information). It also means you can take action early to prevent getting some of the cancers linked to the mutations. For details of preventative options click here.

Truth: It goes without saying that healthy eating, exercise and generally looking after our bodies is a good idea, however a BRCA mutation effectively means a portion of your DNA is broken. BRCA1 and BRCA2 are tumour suppressor genes, whose job is to stop cells developing into cancer; when they are broken, one of your body’s lines of defence no longer works. There is currently no way of fixing that and there is no lifestyle choice that can “switch on” BRCA1 or BRCA2 to work again. There are some lifestyle options that have been shown to have some impact on the risk but that risk remains higher than the general population.

Truth: Testing negative for BRCA1 or BRCA2 can mean a number of things. If you have a known mutation in your family, and you test negative for that mutation, you will still have at least the same risk of getting cancer as the general population, which for ovarian cancer is around 2% lifetime risk. It is worth knowing what symptoms to look out for. If you have a strong family history of cancer but no mutation is identified, it could mean there is a genetic mutation in your family that has yet to be found by researchers. Your genetic counsellor will discuss with you what this means for you and your family.

Truth: BRCA mutations can be inherited by, and passed down to, men or women. If someone has a BRCA mutation, there is a 50/50 chance they pass it onto their child, whether they have a son or a daughter. This is why it’s important to look at both sides of the family when researching family history.  Take a look at our Hereditary Cancer Risk Tool.

Truth: Not only do BRCA mutations impact men due to the fact that all men have a mother, sister, friend or partner in their life who could be at risk, but their own cancer risk is increased if they have a BRCA mutation. Did you know men can get breast cancer too?

Find out what the cancer risks are for a BRCA+ man.

Truth: BRCA1 and BRCA2 aren’t the only genetic mutations that can increase your ovarian cancer risk. Lynch Syndrome, for example, is a group of genetic mutations that cause a number of cancers. In this case, you may not see many cases of breast cancer in your family history, but may see other cancers such as colon, endometrial (uterine) cancer, or stomach cancer, and these mutations also increase the risk of ovarian cancer to around 10%.

For more information about different genetic mutations that impact your ovarian cancer risk, download our leaflet

Truth: Although only around 15% of ovarian cancer cases are caused by a genetic mutation, up to 50% of women diagnosed with ovarian cancer who test positive for a BRCA mutation actually have no family history of the disease. Based on current guidelines, if you have a high-grade serous epithelial carcinoma you are automatically eligible for BRCA1/2 genetic testing. This is because a high-grade serous epithelial carcinoma diagnosis automatically puts you over the significant risk threshold.

For more information about getting tested when you have ovarian cancer, please see here

Truth: Genetic mutations can’t “skip” a generation. Because not everyone with a genetic mutation gets cancer, it can be the case that in one generation, nobody gets cancer at all, but it can still have been passed down to you or your children. Similarly, if you test negative for a particular known mutation, it cannot “skip” you, and you cannot pass it down to your children.

Truth: It’s true that, when you get the news that you have a BRCA mutation, you may feel like you want to do everything all at once to reduce your risk, it’s important to make these decisions carefully and discuss your options with your genetic counsellor. Your options will depend on your age and your mutation, but surgery is not the only choice. There are screening programmes for breast cancer on the NHS for example, as well as chemoprevention. 

Truth: If you have ovarian cancer and have found out you have a BRCA mutation, it can positively impact your treatment as there are targeted treatments and clinical trials that you can get involved with (click here for more information). Finding out you have a genetic mutation could also give other members of your family, or your children, the option to take preventative action to reduce their own risk.  

Truth: Preventative mastectomy with breast reconstruction (to reduce the risk of breast cancer) and the removal of your ovaries (to reduce the risk of ovarian cancer) are both covered by the NHS for woman with BRCA mutations. For your different options click here.

Truth: It is entirely your decision whether you want to have a genetic test or not. No one can make that decision for you. It is worth speaking with a genetic counsellor to discuss all your options and what impact the genetic test would have but the final decision is yours.  

For more information about BRCA, please check out the BRCA Hub or contact brca@ovarian.org.uk