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A Hereditary Cancer Syndrome and the 'Cancer Previvor'

Jessa Blount, MS, CGC, Genetics Counselor
The Chester County Hospital and Health System

Published: November 15, 2010

A variety of factors interact to increase an individual's risk of cancer including environmental influences, age, family history, and different genetic markers. While the vast majority of cancers are considered sporadic or caused by environmental factors, approximately 5-10% of all cancers are hereditary. A hereditary cancer syndrome is caused by mutations in specific genes that are transmitted from parent to child. Individuals that inherit one of these gene changes will have a higher likelihood of developing cancer within their lifetime.

For those that have an inherited cancer syndrome, but are not yet affected by cancer, the medical community uses the term "unaffected carrier." These men and women are put into the high-risk category for developing cancer and begin a medical management journey much different from the general population. The term "cancer previvors" was coined to better encompass the emotions and medical decisions that someone faces after learning he or she has a hereditary cancer syndrome. Cancer previvors are survivors of a predisposition to cancer who haven't yet had the disease. Cancer previvors share similarities with cancer survivors in that they face some of the same fears, undergo similar tests and confront the same medical management issues. However, cancer previvors meet a unique set of emotional, medical and privacy concerns.

Knowledge is power, but with the gift of knowing your risk comes the burden of decision making. Cancer previvors are faced with tough decisions regarding their healthcare options. Medical recommendations may include a range of options from increasing cancer surveillance to elective prophylactic (preventative) surgeries. Women who carry a BRCA1 or BRCA2 gene mutation, which predisposes women to breast and ovarian cancer, are faced with the very personal decision to remove their breasts. Although a prophylactic mastectomy significantly reduces their risk of cancer, other factors impact this choice: will the surgery affect how feminine the woman feels, did the woman hope to breast feed future children?

The privacy concerns relating to hereditary cancer syndromes often revolve around the possibility that an individual will be discriminated against based on his or her genetic make-up. Federal laws have begun to catch up to technology in the genetic realm. The Genetic Non-discrimination Act (GINA Act) was signed into law in 2008 to help protect individuals against discrimination by healthcare insurers and employers based on their genetic information. Additionally, the Health Insurance Portability and Access Act (HIPAA) prevents discrimination from enrollment in group health insurance plans so long as coverage is maintained continuously.

While there are many benefits to discovering that you have inherited a cancer-predisposing mutation, for many individuals there is also an emotional toll. Many cancer previvors share that their concern of developing cancer takes over their thoughts. Others express feelings of guilt over the possibility that they have passed this genetic risk on to their children. And as family members that carry the genetic factor begin to make choices on how to manage their cancer risks, differences in healthcare decisions can strain family ties.

The choice to better understand your health predisposition should be considered with great care and made with the full awareness that having a clearer picture of your genetic make-up may lead to more questions to address. If you decide to learn more, there are professionals that specialize in genetics counseling who are in a position to help you and your family guide the next steps in your previvor journey.

This article was published as part of the Daily Local News Medical Column series which appears every Monday. It has been reprinted by permission of the Daily Local News.

Last Updated: 11/16/2010