Do I need a double mastectomy?

In 2013 Angelina Jolie announced she had undergone a preventive double mastectomy. Her choice for having the surgery was due to her having inherited the BRCA gene. Since then, studies have found that the “Jolie effect” has caused a significant rise in genetic tests and preventative double mastectomy surgeries.

But what is the BRCA gene? And how does it affect your risk of developing cancer? In the third of our myths and misconceptions series, we delve deeper into the BRCA gene and the “Jolie effect.”

What are genes?

We inherit our genes from our parents; they are what makes us “us.” Genes determine our hair and eye colour, whether we have attached or unattached earlobes or even hair on our toes! Half of your genes you inherit from your mother, and the other half you inherit from your father.

What is the BRCA gene?

There are two types of BRCA genes, aptly named BRCA 1 and BRCA 2, but they are sometimes referred singularly as the BRCA gene. You can inherit the BRCA gene from one or both of your parents. Those who have inherited the gene are predisposed to developing breast and ovarian cancer.

What types of cancers are associated with the BRCA gene?

Breast and ovarian cancer are the two most common cancers associated with the BRCA gene.

What are the consequences of being BRCA positive?

A person that is BRCA positive has inherited one or both of the BRCA genes from their parents. Someone who is BRCA negative does not have the BRCA gene.

Will I get cancer if I’m BRCA positive?

Not necessarily, but it does increase your chances of developing breast or ovarian cancer significantly. In the USA alone, approximately 12% of women will develop breast cancer before the age of 70. But women who are BRCA positive have up to a 65% chance of developing breast cancer before they are 70 years old. 1.3% of the general population develop ovarian cancer throughout their life, but those who have inherited one of the BRCA genes have up to a 39% chance of developing ovarian cancer. Due to this high percentage, it is important to be vigilant about monitoring your breasts and other signs of cancer; and get checked out by a doctor should you have any concerns.

Can I still get cancer if I don't have the BRCA gene?

Yes. Only 5-10% of all breast cancers and 13% of ovarian cancers are thought to be related to genetics (genes such as the BRCA gene). 

Should I consider being tested for the BRCA gene? 

Not everyone needs to be tested for the BRCA gene. People who should consider being tested are:

  • Those with a strong family history of breast and/or ovarian cancer
  • Ashkenazi Jewish descent
  • History of breast cancer in both breasts
  • Cancer diagnosed before the age 50
  • Males diagnosed with breast cancer

*Please note this list is not exhaustive; your oncologist will be able to provide you with more information on whether you should be tested or not.

For peace of mind, people are choosing to be genetically tested. There is controversy surrounding this approach, as healthcare professionals are worried that those who are negative become complacent in breast check-ups, as they believe their risk has been lowered. It is still very important that you continue with your breast checks, even if you are told you are BRCA negative, as it does not remove the risk of developing cancer in the future. 

Do I need a double mastectomy if I have breast cancer?

For some people, a double mastectomy is recommended as treatment due to their genetic risk, size or grade of the tumour, the presence of cancer cells in other parts of the body (metastasised) or if cancer has returned (recurrence). Women who have inherited the BRCA gene may also be given the choice to undergo a preventive double mastectomy, such as Angelina Jolie did. However, there is a rise in the number of women who are choosing to have a double mastectomy when diagnosed with low-grade breast cancers.

What do I need to consider before choosing to have a double mastectomy?

For some women, it is pivotal for prognosis to have a double mastectomy. If you have been given the choice, or for peace of mind, you would prefer a double mastectomy, there are a few factors that you should keep in mind:

  • A double mastectomy is a large operation

In comparison to a lumpectomy, a double mastectomy, with or without reconstruction, can impact your mobility, pain levels and increase your recovery time.

  • A double mastectomy may not reduce your chances of cancer returning or spreading

Breast cancer survival rates for low-grade breast cancer are very high. Over 50% of women diagnosed with breast cancer have it localised to a single breast, and for this type of cancer, the five-year survival rate can be up to 99% (99 out of 100 people). For cancers that have spread only to the lymph nodes, the five-year survival is still very high at 85%.

In the last decade, new medications have also been developed to reduce the chances of cancer cells returning.

  • Your insurance company may not cover you

Depending on where you live, your insurance company, or national health, may not cover a double mastectomy. It is very important to find out your coverage prior to having the operation, as you could end up financially out of pocket.

If you have any questions regarding your choices for genetic testing or want to discuss with someone in detail about preventative double mastectomies, your treating doctor will be able to refer you to a genetic counsellor or geneticist. 

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