By Matt Hickman
When movie star Angelina Jolie announced in the spring of 2013 that she had both of her breasts removed, not because she had cancer, but because she had a high probability of getting cancer, most of America was shocked, gobsmacked. What crazy idea had gotten into her head and who were these butchers performing this abomination?
But for Maggie Miller, a genetics counselor at Providence Medical Center in Anchorage, the announcement was the cultural breakthrough those in her field had been waiting for.
“Angelina Jolie definitely changed the field dramatically and I thank her profusely,” Miller said. “We have been overwhelmed at the amount of work that came after her announcement, around the world at large.”
As people came to understand that Jolie, as a carrier of the BRCA Gene 1 Mutation, had as much as a 3 in 4 probability of developing a deadly form of breast cancer, the kind that had killed her mother and her aunt, they began to understand more about the role of genetic counseling in the fight against cancer.
“I would say 75 percent of people who come in have relatives who have had breast cancer. There’s many ways to assess breast cancer risk models — hormonal, and lifestyle and family history,” said Miller, who is currently Alaska’s only genetic counselor. “The average woman has a 13 percent risk of developing breast cancer, but with the BRCA 1, it’s between 65 to 85 percent, depending on which article you site. It’s not a certainty, but it is a high risk.”
Miller points out that genetic testing for cancer isn’t all about breast cancer. In fact, she says, colon cancer carries a higher prevalence for inheritance and an early understanding of risk can lead to lifestyle changes and medical strategies for prevention and early detection.
“Colons aren’t the hot topic, but colon cancer is highly preventable,” Miller said. “We’re hoping to encourage more referrals in that realm. We can detect Lynch Syndrome, which causes 3 to 5 percent of all colon cancers.”
Getting patients, who aren’t yet sick to come in for such a potentially alarming test isn’t easy, as one might imagine.
“It’s still new to people,” Miller said. “One of students onetime mentioned that ‘all of your patients are so brave,’ and statistically, those referred who make appointments, only 25 to 33 percent actually come in… It’s a brave idea to come in to find out that you could be at high risk.”
Miller said that just because a patient comes in with an elevated probability for developing breast cancer, it doesn’t mean mastectomy is the next course of action.
“We definitely talk about that and we work with breast surgeons and plastic surgeons — it’s a collective effort for sure,” Miller said. “Organizations like FORCE (Facing Our Risk of Cancer Empowered) do an excellent job of pairing our patients with organizations… The quality of a woman’s life is what she is worrying about when she is screening. Everybody makes their own, personalized decision. I don’t see myself as the final decision-maker in these situations. One of my patients found out she was positive and went to another counselor because she found herself having panic attacks.”
Miller said that usually medical insurance will cover the cost of genetic testing for risk.
“In most instances, insurance pays for genetic testing if it meets the criteria. The simple ones to watch for are a relative having had cancer if you’re 45 or younger, or three in your family or two with breast cancer and ovarian cancer,” she said. “There are options for out-of-pocket and that happens at a fairly high frequency. It’s reasonable for a woman to pay, out of pocket a charge of about $250. One of my patients, said, ‘gosh, I pay more than that to see a baseball game,’ which is true if you think about a family of four with parking and hot dogs.”
As understanding and acceptance of genetic counseling and preventative genetic testing grows, it’s still a new field in the fight against cancer. Miller, who has been working at Providence for the last 14 years, said she hopes to one day see a test for ovarian cancer, like that of the mammography variety. Apart from the life-saving benefits such a test would enable, the financial upside is tremendous as well.
“The cost of treating one woman with ovarian cancer has to be over a half-million dollars, closing in on a million, especially now that we’re able to keep women alive for many, many years,” Miller said. “So with genetic testing, if you can get a likelihood in testing positive of 75 percent in terms of high frequency, that’s 1 in 800, so if you did that 800 times at $250 you’d only spend $200,000 to test those women, which is far less than it costs to treat one.”
For the patient, Miller also pointed out such a test would allow those women to have their ovaries removed rather than spend 10 years in chemotherapy.
“When I started we were just able to test BRCA 1 and 2 for $4,000 apiece and now we can test 100 genes for $250,” Miller said. “It’s a really cool change seeing how much targeted therapy or personalized medicine we have based upon these tests.”