Sifting Through Stories to Find What’s Right for Me

Celebrities. We are fascinated by them. We often want to be like them. And we often take their advice based on their personal experience. Recently, Christina Applegate announced she had her ovaries removed after learning she tested positive for a BRCA1 mutation (more on that below). Applegate, a breast cancer survivor who has had a double mastectomy, is now an advocate for giving women access to genetic testing that might tell them if they’re at a higher risk for cancer due to genetic mutations. Additionally, she advocates for access to additional breast cancer screening measures in women who are high risk (i.e. breast MRI screening in addition to mammography). Applegate also discusses how having knowledge about her genetic risk will affect her daughter’s personal healthcare decisions.

It’s admirable that Hollywood stars and public figures are willing to share their personal stories to create awareness and generate discussion on important health topics. But, as we read these news stories and try to determine how a celebrity’s situation matches our own or that of someone close to us, it’s important to remember that each individual situation is unique despite seemingly similar circumstances and that we may not know all the details surrounding the person’s decision. As a genetic counselor, patients often tell me how hearing about the experience of Angelina Jolie or Christina Applegate has affected them. However, there are numerous factors individuals need to consider as they make decisions about their own health, such as their family history, diet and lifestyle, tolerance for risk and their plans for having children. 

Below are some things I talk to my patients about.

How do environmental factors, such as stress, play a role in cancer?

I frequently hear comments about stress being a potential risk factor for cancer, or about how a cancer was diagnosed after a stressful life event. While I don’t doubt that stress affects our health, it’s difficult to get solid data to prove or disprove how much of a role stress plays in the development of disease. We all experience and cope with stress in different ways, which may also affect our health differently.

Often, we are looking for ways to reduce cancer risks. As busy people, it seems we need permission to make time to take care of ourselves. Having healthy activity levels and being in an ideal weight range can help protect one’s health even if there is an underlying inherited risk factor. The American Cancer Society recommends exercising 30 minutes a day roughly five times per week, so set aside time to do the physical activities you enjoy. You will likely reduce your stress at the same time! 

I also frequently hear questions about the role diet plays in cancer risk and risk reduction. Often the goal is a well-balanced diet with plenty of fruits and vegetables. However, people have different dietary needs, so talk to your doctor or a dietician about your nutrition questions rather than following the latest fad. 

What role do our genes play, and how can I protect my family?

When Christina Applegate shared her decision to have preventative surgery, she also shared her concern that her daughter may have inherited the BRCA1 mutation and the cancer risks that go along with it. As with most genes related to hereditary cancer, BRCA1 is inherited in an autosomal dominant pattern. This means that there is a 50 percent chance to pass on the non-working BRCA1 gene and a 50 percent chance to pass the gene that is working. So, the likelihood of passing on the gene is the same as the likelihood of not passing it on. 

People often share their worries for their children’s and grandchildren’s risk for hereditary disease, and hope to do something to protect their health. There is something you can do! Share your family history, health history and any genetic test results with relatives so they can take steps to help protect their health and share the information with their healthcare providers. Our understanding of cancer risks and options to reduce or prevent them will evolve and advance over time. 

Also, consider participating in research to help better understand how genes play a role in cancer, how your personal and lifestyle choices influence cancer, or how effective treatments or surveillance were in detecting or treating your cancer. This can be a useful way to help you reach the goal of better options for future next generations.

Stay up to date on guidelines and review your own plans

The guidelines for surveillance and risk reduction options change at least once a year based on the new information available about each gene known to have a role in increasing cancer risk. As people move through different phases of their life, their cancer risks and options for managing that risk change. Genetic counselors can explain complex information in a meaningful way and help you review current data for the inherited risk factor in your family and discuss how the data may apply to you and any upcoming decisions about your health care. We work as partners with the other members of your healthcare team and are a great resource for you throughout your life.

Joy Larsen Haidle, MS, LGC, is a past-president of the National Society of Genetic Counselors, an NSGC Cancer Expert and a genetic counselor at North Memorial Health Cancer Center.

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