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Genetic Testing: An Emotional Decision

Genetic testing for breast cancer evokes emotional issues from the moment a woman begins to consider testing or is told that a close family member is considering genetic testing. This is true whether or not the individual woman has herself been diagnosed with breast cancer. Concerns over the results of the testing, and where those results may lead, often cause anxiety and other stress reactions. Waiting for results is a period of uncertainty and, often, worry.

Genetic counselors and some breast specialists and oncologists are trained to discuss the possible results and benefits of testing and to help you be certain that genetic testing is both medically appropriate and personally and emotionally right for you. These experts can also help you consider the possible strategies to reduce your risk should the results be positive.

Most women experience great relief if the test results are negative. But they may also have questions about why they or a loved one developed breast cancer that looked potentially high-risk. If other family members have positive test results this can lead to a range of emotions and potentially complicate family relationships. Test results can be inconclusive as well. It’s common to get a result that says “indeterminate,” which means that no known abnormality was found to explain the cases of breast and other types of cancers running in a family. This kind of report can make you continue to feel uncertain.

When the results are positive for genetic markers that are high risk for breast and ovarian cancer, intense feelings are a natural reaction. Anxiety, sadness, anger, guilt, and many other feelings may be experienced. These feelings can occur early in the process when deciding whether to test, while waiting for results, or after the results are known. These intense feelings are a normal reaction to this very stressful experience. It can be helpful to have discussed and thought through the options to minimize cancer risks before knowing these results. While there is no need to have a definite plan in place before receiving the results, thinking through the options can help you prepare for the possibility of a result indicating increased risk. Most women choose to bring along a partner or trusted friend when going to hear the results of the testing.

A positive test result for the genetic markers indicating increased risk frequently creates anxiety over family and other issues. How will family members react to learning that your test was positive and that they may be at increased risk? Think over how sisters, adult daughters, mothers, and even cousins and others may react and how you will share this difficult news. Each family situation is unique. Each individual within the family may have very different reactions and may choose different ways to deal with the same news. When you choose to tell family members who may be at risk, they will need time to process this upsetting information and to decide what they will do to assess their risk.

Mothers may feel worried and guilty about the possibility of passing their genetic mutation onto a child. Adult children and close relatives may choose to be tested themselves. Mothers frequently worry about daughters far too young to be at immediate increased risk.

Anger is also a normal reaction to finding out that you have a genetic mutation that places you, your children, and other loved ones at increased risk of developing a life-threatening illness, or anger at learning that this is why a loved one died before we knew about genetic mutations and ways to lower the risk of breast cancer.

Angelina Jolie’s courageous decision to make her choice of preventive mastectomy public is so helpful in a culture that sometimes emphasizes women’s body appearance over their health. Her announcement reaffirms that beauty and femininity do not depend on breasts. Her public statements made it clear that reconstruction worked well for her and that a supportive partner can value health and peace of mind over breasts.

Mastectomy evokes emotions beyond those of major surgery. The option of reconstruction creates additional medical choices. However, the loss of a body part with or without reconstruction may cause sadness as well as relief that a potentially deadly illness has been prevented. Powerful feelings about body image may need to be acknowledged and worked through. It can feel different when the decision is preventive rather than the removal of a known cancer. Sadness and loss, as well as relief may come all at once, or later on, after the physical healing process has occurred. Expecting a wide range of normal emotional reactions can be helpful when you are going through the whole process.

Some women choose not to test. This, too, is a valid personal choice. Choosing not to test is something you can revisit later if the need arises. Situations change and new tests are and will be developed. If you are at high risk and choose not to test, you can seek advice again in the future and decide on other medically appropriate ways to monitor your breast health.

Knowing your risk status allows you to choose to reduce your risk through medication, careful medical monitoring, preventive surgery, or some combination of interventions. Testing allows you to make a choice that is right for you with the help of a genetic counselor, breast specialist, or oncologist. Each woman’s physical and emotional needs are her own.

When anxiety, sadness, or anger continue or feel overwhelming, or ongoing difficulties with partners or family members persist, it can be helpful to seek additional counseling from a psychologist or other mental health professional with special expertise and experience in health issues.

Most women eventually work through this roller coaster of emotions and feel empowered by the information needed to make choices that will help protect their lives.

Tamara Shulman, Ph.D., F.A.A.C.P. is a licensed psychologist with a private practice in Manhattan (NYC) and Clifton, NJ. She specializes in helping adults, adolescents, and children experiencing anxiety, depression, health issues, and relationship and parenting concerns. Her website is www.tamarashulman.com and her office number in New York City is 1.212.980.0578.

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