Some People Said I Was Crazy. . .Why I Turn Down Genetic Testing for the Mutated BRCA1 & 2 Gene

I was 27 when I received the shock of my life, my first mammogram, and then strongly encouraged to get genetic testing.

I was a classical trained ballet dancer still performing with a civic theater. I barely had breast! Why so young, you might ask? My mom was misdiagnose at 48. She was told she had a calcium deposit on the sternum, but intuitively she knew something was terribly wrong. At her insistence correct diagnosis came at 50. She lost her battle at 62. My older sister, years later diagnosis at 46. She lost her battle at 52. Both were said to be survivors.

Our family doctor insisted that all of us girls, there were 5 of us, come in for genetic testing. I made a conscious choice not to. I asked myself, what would I do differently knowing if I was positive or negative for the mutated BRCA1 and/or 2 gene?

Would I opt for drastic measures, preventive surgeries. . .removing both breast and ovaries? Chemotherapy prophylactics? Would I be enslaved in fear with knowing or not knowing if I carry the mutated genes?

The answer for me. . .it didn’t make a difference. . . knowing. . not knowing. I live my life to the fullest, in the healthiest way possible, mind, body and spirit and all without fear of what may or may not happen. I was a wife, and continue to be a mother and now proud grandmother. I continue to educate myself and others on being proactive with their health.

I now help women, breast cancer survivors a year or more in remission, to live fearlessly, reclaim, renew and thrive with their second chance at life.

Each of you must make your own decision to genetic test or not. Do your own research and ask questions. Make your decision base in knowledge not on what the next celebrity decides to do.

To get you started here are some pros and cons for genetic testing:

Excerpt from: BRCA1 and BRCA 2 Cancer Risk and Genetic Testing Fact Sheet National Cancer Institute at the National Institute of Health What are some of the risks of genetic testing for breast and ovarian cancer risk?

The direct medical risks, or harms, of genetic testing are minimal, but knowledge of test results may have harmful effects on a person’s emotions, social relationships, finances, and medical choices.

People who receive a positive test result may feel anxious, depressed, or angry. They may have difficulty making choices about whether to have preventive surgery or about which surgery to have.

People who receive a negative test result may experience “survivor guilt,” caused by the knowledge that they likely do not have an increased risk of developing a disease that affects one or more loved ones. Because genetic testing can reveal information about more than one family member, the emotions caused by test results can create tension within families.

Test results can also affect personal choices, such as decisions about marriage and childbearing. Violations of privacy and of the confidentiality of genetic test results are additional potential risks. However, the federal Health Insurance Portability and Accountability Act and various state laws protect the privacy of a person’s genetic information. Moreover, the federal Genetic Information Nondiscrimination Act, along with many state laws, prohibits discrimination based on genetic information in relation to health insurance and employment, although it does not cover life insurance, disability insurance, or long-term care insurance.

Finally, there is a small chance that test results may not be accurate, leading people to make decisions based on incorrect information. Although inaccurate results are unlikely, people with these concerns should bring them up during genetic counseling.

What are some of the benefits of genetic testing for breast and ovarian cancer risk?

There can be benefits to genetic testing, regardless of whether a person receives a positive or a negative result. The potential benefits of a negative result include a sense of relief and the possibility that special checkups, tests, or preventive surgeries may not be needed.

A positive test result can bring relief from uncertainty and allow people to make informed decisions about their future, including taking steps to reduce their cancer risk.

In addition, people who have a positive test result may be able to participate in medical research that could, in the long run, help reduce deaths from breast and ovarian cancer.

If this article resonates with you? I would like to offer you a FREE Staying Cancer Free Strategy Session. Email me at: and put in the subject line: “FREE Staying Cancer Free

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About lifetoall

I am Founder and CEO of En Pointe Health LLC. I help cancer survivors to live fearlessly, reclaim, renew and thrive with a second chance at life.
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