Genetic counselor helps those at risk weigh the risks while directing them to preventative care
Eric Johnson
The Georgia Regents University Cancer Center has launched the area’s first dedicated cancer genetics clinic, and as the genetic counselor, Mallory Hire is helping people navigate the new and often complicated waters of genetic testing.
Statistically, genetic testing isn’t necessarily for everyone. Only about five to 10 percent of all cancers can be traced back to a hereditary link, but those who can trace back to that link may be five times more likely to develop cancer, which is why genetic testing can be helpful.
People who would be referred to the genetics clinic would be individuals younger than 50 who have been diagnosed with cancer or those who have multiple people in their family who have had cancer.
“If you have three generations where at least two people have had colon cancer, that’s suspicious, so they would be referred to me so we could try to figure out if it’s due to some hereditary link that we can identify and potentially prevent,” Hire says. “And if the link exists, we can possibly help out other family members.”
Though cancer is not completely preventable, Hire says that if you catch it at an earlier state, then you potentially have a better outcome and a better chance of survival.
“There’s a colon cancer hereditary condition called lynch syndrome, and those individuals have an 80 percent lifetime risk of colon cancer, so if you know that this is in your family, you can start colonoscopies at 25 instead of 50,” she says. “If they’re doing the colonoscopies and checking for colon polyps, they can remove them when they find them instead of giving them the chance to continue to grow and potentially become cancerous.”
The cancer genetics clinic has been open since July, and though she’s located in the Cancer Center, she tends to float from clinic to clinic.
“Just because it’s a new program, I am focused just mostly on the solid tumors,” Hire says. “But I have had a few families that have had more of the liquid tumors, so I’m involved in the GI cancer clinic, the breast cancer clinic and I’m involved with brain tumors and gynecological cancers, too.”
Having distributed guidelines to the different clinics and nurse navigators, she is forwarded the names of those who meet the qualifications. If a patient is interested, she will collect a family history over the phone and, depending upon what she learns, she’ll discuss whether gene testing would be appropriate. If so, they’ll arrange an in-person appointment and review everything that’s involved — the pros and cons and possible outcomes.
“It’s a lot of information up front, and I just try to make sure that each patient feels as autonomous as possible so they can make an informed decision,” she says.
The test itself is just like a blood test, though it can take up to four weeks to get the results back. When they come, she usually calls and gives the patient the results over the phone and then they can set up a second in-person appointment, especially if the results come back positive, because, at that point, they need to talk about recommendations for surveillance.
A positive result doesn’t mean that the patient has cancer, just that they are at an increased risk.
“It’s not a guarantee,” she says. “For most cancer syndromes, it’s never a 100 percent guarantee for cancer. I always try to emphasize that.”
Oddly enough, given the recent emphasis in preventative care, genetic testing is not covered by all insurance policies. Each person’s plan is different, so Hire spends part of her time dealing with insurance companies.
“It’s frustrating, because knowing that somebody has a predisposition, the insurance companies would save a lot of money in treating the patient proactively before cancer rather than treating the patient for cancer,” she says. “It’s my impression that they all sort of waiting to see what everybody else is doing in the insurance world — a ‘they’re not, so we’re not’ kind of thing.”
Hire, who has a masters degree in genetic counseling, wanted to be an interior designer until her 10th grade biology class. There, she was first exposed to genetics, and she says she’s been hooked ever since, and as the technology makes the testing more widely used, positions like hers are becoming more and more important.
“Doctors don’t have time to meet with every single patient and talk in detail like I do, so they need genetic counselors to try to explain genetics as simply as possible,” she says.
Despite the increase in genetic testing, Hire is the only genetic counselor of her type in Augusta, though there are several in Atlanta, a couple in Macon and a few in South Carolina.
Unlike nurse navigators, who stay involved with patients throughout their treatment cycles, Hire seldom meets with patients for more than a couple of visits, because after the testing is complete, she writes a letter with recommendations on the types of screenings she thinks would be appropriate and then the patient goes to the proper physicians to have the tests.
Not only has the Commission on Cancer recently added genetic counseling to its list of standards for accreditation of cancer centers, the Georgia Center for Oncology Research and Education held its first meeting of the Georgia Cancer Genetics Network, focusing on building awareness of how to prevent and reduce the incidence of genetic cancers through a statewide referral network.You Might Also Like:
