Choosing to Know

How genetic testing is changing the way North Texas pursue personal health

Pushed center stage in modern health dialogue, it’s a question science now presents: If you had the option of knowing your body’s potential for developing certain cancers, would you take it?

Today, with approximately 50 genes related to hereditary cancers, the Moncrief Cancer Institute of Fort Worth and UT Southwestern Harold C. Simmons Cancer Center in Dallas are dedicated partners in helping North Texans take the empowering step of answering that haunting question.

Perhaps the most widely known cancer genes, BRCA 1 and BRCA 2 (genes linked to breast cancer) were discovered in 1994 and 1995. Testing for the genes, however, didn’t begin until the late 1990s. Linda Robinson, assistant director of the Cancer Genetics Program at UT Southwestern in Dallas, who began the first Fort Worth cancer genetics program in 2000 explained, “It’s really the Moncrief Cancer Institute that wanted to bring genetics to the Fort Worth area and saw the vision of how this would reduce cancer.”

Most often, individuals who come into the clinics to be genetically tested are either recently diagnosed with cancer or have lost a loved one to cancer. Regardless, both groups are hoping for answers. Before a blood or saliva sample is ever taken though, the testing process begins with a   genetic counseling session.

Sara Pirzadeh-Miller, genetic counseling supervisor at Moncrief Cancer Institute explained, “As a genetic counselor, our expertise is knowing what should peak suspicions when we look at personal and family history, giving recommendations to a patient on what they qualify for and then talking more about what that would mean to that person and their family if they happened to test positive. For example, what cancer risks there would be, what the recommendations would be and help them understand the medical issues as well as thinking through the emotional and physiological issues.”

Robinson explained that when an individual is diagnosed with cancer, doctors increasingly want to know if the cancer is genetic, because it may change their course of treatment. “Cancer treatment is becoming very personalized, and this is something that doctors want to know up front before they even start doing surgery, chemotherapy or any treatment at all.”

While testing for cancer genes can cost upwards of $4,000, the Moncrief Cancer Institute and UT Southwestern make it a priority to provide testing for all who want it, regardless of their ability to pay. In 2012 alone, UT Southwestern and Moncrief’s partnership raised $2.2 million to help fund testing for individuals who could not pay on their own. The program, in fact, is one of only a few in the country with clinics in safety-net hospitals like John Peter Smith in Fort Worth and Parkland in Dallas.

Explaining that 30 percent of the population now doesn’t have insurance, Robinson named key partners like the Susan G. Komen Foundation in Fort Worth and CPRIT (Cancer Prevention Research Institute of Texas) as instrumental in this funding. “And then,” Robinson said, “we tap into every resource that we can use. As genetic counselors, we’re attuned to all the different resources that are out there for funding.”

Since testing started in Fort Worth in 2000, the Moncrief Cancer Institute has seen approximately 4,500 patients of which 500 have tested positive for the genetic mutation. And while testing positive for a cancer-related genetic mutation does not necessarily mean an individual will get cancer, testing has given way to a whole new group of patients called “previvors.” The term, coined by FORCE (Facing Our Risk of Cancer Empowered, a support group for individuals and families facing hereditary breast and ovarian cancer) represents those who have a gene mutation but not yet cancer. In light of the knowledge that they have a higher chance of being diagnosed, “previvors” can take medical precautions such as changing diet and lifestyle as well as increasing medical surveillance