Angelina Jolie's story puts focus on genetic screening for local women
JANESVILLE — A genetic test showing Kay Petkoff had an increased chance of breast and ovarian cancer left her worrying about her children.
“All I could think of in the immediate future is my kids. I need to be here for them,” the 43-year-old Clinton woman recalled thinking after her December 2011 test.
She was told the results meant she had about an 87 percent chance of getting breast cancer. Being with her 7- and 8-year-old boys is her highest priority, she said.
“I just couldn't see not being here for them,” she said.
She remembered the chemotherapy and radiation treatments her mother, Vicky Tislau, endured to treat three kinds of cancer, including two types of breast cancer.
Petkoff immediately went ahead with a hysterectomy to help rid her body of the estrogen that feeds breast cancers.
Petkoff said she's happy Oscar-winning actress Angelina Jolie has brought more awareness to the stress and tough decisions faced by her and others with a genetic predisposition to breast cancer.
Jolie recently shared her story of her preventive double mastectomy after learning she tested positive for the mutated BRCA1 gene, which increases a person's cancer risk, as does a mutated BRCA2 gene.
“It was very cool that she decided to go through this and to speak out about it,” Petkoff said. “We're just everyday people. We can advocate as much as we want to our friends … (but) she gets global awareness going. That was very awesome.”
Jolie wrote an essay in The New York Times on May 14 describing her family history and her decision to have the preventive surgery in hopes of helping other women.
Local patients seek answers
Over the last five years, Linda Brethauer, an oncology nurse practitioner at Mercy Health System in Janesville, has seen “a huge growth” in the number of people referred to her for genetic counseling.
“I've seen an increase in the number of people who do not have cancer but are referred by primary care physicians or gynecologists who realize that they (patients) have a big family history of breast or ovarian cancer and know how important that is,” she said.
Since she started at Mercy in 2004, she's done BRCA1 and BRCA2 gene testing for about 220 women, probably half of those in the last three years, she said.
Oncology Dr. Michael Frontiera of Dean Clinic has seen an increase in interest for the testing over the last decade.
“I think it's because awareness has been raised,” he said. “Women are becoming more educated about the risks of development of cancer. More women are being proactive.”
He anticipates more women will be asking about testing either for themselves or family members in light of hearing Jolie's story.
Because Brethauer works in the oncology clinic, the majority of patients she sees for genetic counseling and testing already have cancer.
“It used to be those were the only people,” she said. Now, 15 to 20 percent of her referrals are people who do not have a cancer diagnosis but have a family history.
Brethauer said she already recognizes Jolie's story will have a positive effect.
“A lot of women with a gene mutation feel kind of lonely,” she said. “I think that her just going public is really going to help.”
She estimated about half of her patients who tested positive for the gene mutation have gone ahead with a bilateral mastectomy, both with and without a cancer diagnosis, though far more made the decision after learning they had cancer.
The genetic test is run on a blood sample and can cost $3,000 or more. Local doctors said insurance usually covers the test if the patient fits the national guidelines for testing.
Petkoff is thankful her coverage allowed preventive surgery.
“If I would have done this 10 years ago, I probably would have been paying out of pocket,” she said.
Her twin sister, who also tested positive for the gene mutation, is holding off on treatment because her insurance coverage isn't as good, Petkoff said.
Brethauer attributed the increase in testing to two factors: increased awareness for genetic testing and a 2009 federal law prohibiting insurance companies from discriminating against people based on genetic test results.
A couple decades ago, doctors also didn't have a recommended treatment for someone with the gene mutation outside of a clinical trial, she said. Now, women and men—who also can get breast cancer—have options to reduce their cancer risk if the test is positive, Brethauer said.
Not for everyone
The younger the woman is when she's diagnosed with breast cancer, the higher her risk of having the gene mutation, Frontiera said. Most women don't meet the testing criteria because most women diagnosed with breast cancer are 40 or older, he said. Testing typically is not covered for those 40 or older, he said.
Only 5 percent of breast cancer patients were between ages 30 to 39, while about 17 percent were 40 to 49 years old, according to Mercy's data on local patients. The remaining patients were 50 and older.
The majority of women diagnosed with breast cancer don't fit into Jolie's category, said Sandra Mascari-Devitt, a breast health patient navigator at Mercy. More than 90 percent of breast cancers are not hereditary, she said.
After the rough recovery from her hysterectomy, Petkoff is still on the fence about having a prophylactic bilateral mastectomy, but she guesses eventually she'll “probably” do it.
The hysterectomy reduced her chance of breast cancer to less than 50 percent, she said.
Still, “the odds are against you,” she said.
“All I could think of when I got the information was 'I need to get this stuff out of my body so it doesn't get infected,' ” she said.
“It's just nerve-racking. It's not worth the stress.”