Reciting the Past: Genetic Testing for Breast Cancer

When I was diagnosed with breast cancer at the age of 43, I felt like my life had been derailed. But in a way, it has: The weeks that have followed my diagnosis have been filled with appointments and pathology testing and uncertainty about what would happen next. I started researching genetic testing for breast cancer since there is a history of cancers in my family. I’ve realized how much more complicated my situation could become without it. Genetic testing can provide information about your risk for developing breast cancer and help you plan for treatment—but it can also be emotional because your results may be surprising or upsetting.

In this blog, I’ll cover what genetic testing is and why it’s so important for women who have been diagnosed with breast cancer; how genetic testing affects treatment decisions; what to do if your employer asks about your results; and more.


Genetic testing for breast cancer

I was sent to an appointment with a geneticist at the University of Michigan this week to determine some of my treatment options. I have a few to choose from with the type of tumors I have – lumpectomy/radiation or mastectomy (chemo TBD); all of these can be decided based on my genes and pathology from a sentinel node biopsy that will be coming soon.

The genetic testing for breast cancer can help you determine your risk of developing breast cancer and whether you will benefit from certain treatments. It can also help you decide how to manage your risk of developing the disease and make decisions about treatment.

Genetic testing for breast cancer can be done in two ways:

  1. through a blood test or saliva sample (called gene panel testing)
  2. by collecting cells from inside your mouth with a cotton swab (called buccal swab).

What is genetic testing?

Genetic testing is a way of analyzing your genes to look for certain mutations, or changes to the DNA. It can tell you if you have a higher risk of developing breast cancer in the future.

This type of testing is not diagnostic; it only tells you what your risk is.


What does genetic testing tell me about my risk for breast cancer?

Genetic testing for breast cancer can tell you if you have a gene mutation that increases your risk for breast cancer. If you have a gene mutation, there are steps you can take to lower your risk and get tested for other cancers.


How does genetic testing affect the way I’m treated for breast cancer?

Genetic testing can help you decide how to treat your breast cancer. For example, if you have a mutation in the BRCA1 or BRCA2 genes that increases your risk for ovarian cancer, you may want to consider having prophylactic oophorectomy (removal of both ovaries) or mastectomy (surgical breast removal).

If genetic testing finds no mutations in the breast cancer genes but shows that you have other high-risk factors for developing other types of cancers (my aunt ended up with breast and ovarian cancers), then it might be reasonable to consider additional screening tests such as colonoscopy and endometrial biopsies.


Can my employer use my genetic information?

If you are currently employed, your employer can use your genetic information to determine whether or not you are eligible for health coverage. They may also use this information to determine the cost of premiums, but they cannot use it in any way that would directly impact your salary or hourly wage.

If you are self-employed and considering an insurance policy through an employer-sponsored plan (ESOP), then yes: your employer will be able to access any relevant results from genetic testing services like 23andMe and AncestryDNA (as well as similar services).

It’s important to know that the Genetic Information Nondiscrimination Act (GINA) protects you from discrimination based on your genetic test results. However, GINA only applies to employers with 15 or more employees and does not cover life, disability and long-term care insurance companies. It is also important to understand that there are no laws protecting you from discrimination based on family history of breast cancer.

Managing the emotions of genetic testing

I wasn’t expecting how I would feel having to recite all of my family history to the geneticist. Many of cancers that have happened in my family represent a time in my past of grief, loss, even anger at losing my loved ones. Maybe it enhanced the fear a bit about my own breast cancer journey – if they died of it, maybe I will too?

It’s important to remember that genetic testing for breast cancer is not a one-size-fits-all process. The following are some tips for managing the emotions of genetic testing:

  • Talk with your family members about your decision to undergo genetic testing. They may be worried about what this means for their own health and/or they may have questions that they want answered before proceeding with any further action. If you decide not to undergo genetic testing but still want them involved in your care, consider asking them if there are specific things they could do during doctor visits or phone calls with medical professionals that would help ease their concerns (e.g., taking notes).
  • Talk with your doctor about how he or she would like you communicate findings from the test results back up front so that everyone is on the same page when it comes time for follow-ups after receiving results.


There is a lot to consider when deciding whether or not to undergo genetic testing for breast cancer. The information it can provide can be helpful in managing your family’s risk and your treatment options, but it also raises many questions about privacy and how your employer might use this information against you. If you are considering genetic testing for breast cancer, talk with your doctor about the risks and benefits. You also may want to consider consulting a genetic counselor to learn more about the process, what it means for you and your family and how to best manage this information.

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