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Genetic testing can help a person understand whether they’ve inherited a higher risk of developing certain cancers and develop plans for preventive care.
Still, it’s a complex topic that can leave people feeling empowered in their care, or in dread of what might happen. That’s why the UW Health | Carbone Cancer Center has a team of genetic counselors that helps patients evaluate their family cancer history and talk through the emotions involved in knowing those results—even if the patient ultimately decides not to take a test.
“It’s a very personal decision to find out this risk,” said genetic counselor Kristina Garcia. “Whether we test or not, the genetic variant can be there, but unveiling it to yourself, it can be scary, and we help them look at all of their options.”
Patients can reach out directly to the genetic counseling team without the need for referral. Often, Garcia said, a loved one’s cancer diagnosis may get a family member thinking about their risks. Or, a patient has been newly diagnosed with cancer and wants to understand the genetic factors that can influence their treatment. Garcia has also met with people who are adopted or may not know all of their biological family health history.
During the initial appointment, counselors talk with patients about known health history, personal risk factors, environmental exposures, and other factors that can impact cancer risk. If the patient decides not to pursue a genetic test, the counselors still offer guidance and resources to manage risk.
“If somebody came in and said they don’t want genetic testing but this is my family history of cancer, we can help them come up with a plan or at least get them to the people who can help them plan,” she said.
Testing is done with a blood or saliva sample, and genetic counselors will talk through what those results mean. The counselors then connect patients with additional services, such as planning increased cancer screenings or whether preventive surgery is an option. They also can make a referral for psychologic counseling if patients want extra help coping with their results.
Still, even a family history of cancer does not always mean there is a hereditary factor. The National Cancer Institute estimates between 5 and 10% of all cancers are associated with an inherited genetic variant. Some of the most common include mutations in the BRCA1 or BRCA2 gene, which can increase risk of breast, ovarian, prostate and other cancers.
Once a patient knows there is an inherited higher risk of cancer, it’s natural for them to want to warn other family members. Garcia said counselors can write letters about those test results for patients to distribute to family members if they wish. These letters are tools to ensure accurate information is shared, but patients shouldn’t pressure family members who are hesitant about testing.
“At the end of the day, if a family member doesn’t want to do testing, that is their choice,” she said.