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    The Emotional Toll of Post-Diagnosis Genetic Testing

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    A cancer diagnosis brings with it a flood of questions – not only about how to treat the cancer, but also about its origins. Genetic testing can often provide answers. While this is, of course, a positive thing, genetic testing can be more emotionally taxing than many people realize.

    Sarah was diagnosed with breast cancer at age 37. Young adults (age less than 40 years old), who are diagnosed with cancer are offered genetic testing. Sarah underwent the testing to help decide what would be the best treatment for her breast cancer, because some genetic abnormalities increase risk of cancer in the other breast and the ovaries. After a blood test, Sarah was relieved to know she was not positive for the genetic abnormality (called a BRCA mutation), but she had a great deal of guilt, some say survivor’s guilt, because another young woman in her support group tested positive for the BRCA mutation. “Cancer is so complicated! I feel all knotted up and guilt ridden about someone else’s diagnosis!” Sarah did some talking therapy to help her make peace with the fact that her cancer experience was going to be unique, but that she could still offer support and encouragement to people in her group.

    Pam is a 67-year-old with lung cancer who could not stop wondering, even obsessing, about why she got lung cancer. The obsessive thinking about her family history (genetic risk) was getting in the way of sleep, work and even time with her friends. “I only have two relatives with cancer, not even in the lung, and those were distant cousins!” After meeting with her oncologist, Pam learned that there was not a specific test for her kind of cancer, and that there would be no benefit in her getting genetic testing. But by learning more about what factors increase cancer risk, how some cancers are sporadic or environmentally (not genetically) linked, Pam was gradually able to let go of her obsessive quest for an answer to why she got lung cancer which freed her up to focus on staying as healthy as possible during treatment.

    Bob got genetic testing done after he was diagnosed a second time with colon cancer at age 50. He was especially interested in knowing if his cancer was caused by a genetic abnormality because he had a four year old son and wanted to know if the son may be at increased risk of cancer in the future. By finding out if he had a genetically-linked cancer, Bob could help his son make decisions about early screening for cancer when he got older. “I feel sad that my young child has this potential risk, but I know I did not do this to him on purpose. Getting the test may cause a lot of anxiety, but it is worth it if we can make a plan to help keep him safe!”

    If your oncology team recommends genetic testing based on your cancer diagnosis and family history, be sure to schedule with a genetic counselor who is accredited by the National Society of Genetic Counselors. Credentialed counselors will be able to direct you to what tests are absolutely necessary, and help you avoid tests that do not provide helpful information or add unnecessary confusion to your cancer care plan. Also review your insurance plan benefits before genetic testing so you know what kind of financial responsibility may be associated with the test. The goal of any testing should always be to help make treatment plans based on medical evidence that keep you and your relatives as healthy and functional as possible, even in the setting of a cancer diagnosis.

    For further information on genetic testing visit cancer.gov.

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