They still call it the “Angelina Jolie wave” at the University of Kansas Hospital.
When the international philanthropist and filmmaker announced two years ago that she’d had her still-healthy breasts removed because her family history and genetics put her at high risk of breast and ovarian cancer, it set off a tsunami of calls to doctors and hospitals around the world. Anxious women sought genetic testing, and even surgery.
On Tuesday, Jolie announced that she’d had her ovaries and fallopian tubes removed after a recent blood test turned up possible early signs of cancer.
While Jolie’s decision to undergo a preventive double mastectomy and reconstructive surgery provoked some controversy, doctors say that shouldn’t be the case with her latest surgery.
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“I only hope this brings more education and light to ovarian cancer,” said KU Hospital cancer surgeon Jamie Wagner.
Wagner, who specializes in breast surgery, routinely recommends to her patients who carry a genetic mutation like Jolie’s to have their ovaries removed after they reach age 40, or if they have any signs of cancer.
“We don’t have the same (precise) screening tools for ovarian cancer as we do for breast cancer,” Wagner said. As a result, ovarian cancer generally isn’t diagnosed until later in its course, leading to poor outcomes, she said.
That makes it all the more critical to remove ovaries that may become cancerous.
It’s also important for women who’ve been diagnosed first with ovarian cancer to be tested for the kind of genetic mutation Jolie carries so they’re alerted to their risk of breast cancer, said Jennifer Klemp, a genetic counselor at KU Hospital. But fewer than 25 percent of these patients receive the tests.
“If it doesn’t get done up front, it often gets forgotten,” Klemp said.
Ramona Farris doesn’t carry the gene mutation Jolie has, but she knows how hard the decisions can be. The Kansas City woman was diagnosed with Stage 2 breast cancer in June 2010. She was 42.
She underwent a lumpectomy, chemotherapy and radiation. That treatment, she says, threw her into permanent menopause.
After she had “a few incidents of breakthrough bleeding” in 2013 and 2014, she had another critical decision to make. Doctors explained that the bleeding could point to possible cervical or ovarian cancers in the future.
“It was a risk and gamble I wasn’t willing to take,” Farris said. “I did not want to be faced with, ‘Now you have uterine cancer — what do you do? You have ovarian cancer — what do you do?’”
After long consultation with her doctors, Farris had a complete hysterectomy as a preventive measure in December. That included the removal of her ovaries, cervix, uterus and fallopian tubes.
“From my perspective, I was like, ‘This is something I need to do,’” she said.
Jolie carries a mutation of the BRCA1 gene, which raises her risks of both breast and ovarian cancer. Mutations of a second gene, called BRCA2, carry similar risks.
While about 12 percent of all women will develop breast cancer at some point in their lives, about 60 percent of women carrying one of these mutations will. Fewer than 1 percent of women will ever develop ovarian cancer. About 15 percent to 40 percent of women with BRCA mutations will.
But these genes are relatively rare. While the numbers are higher among some ethnic groups, such as Ashkenazi Jews, just one in 400 people in the general population carries them.
And among women with breast cancer, just 2 percent carry these gene mutations.
Researchers who studied the effects of the “Angelina Jolie wave” of 2013 say the public never received a clear understanding of what the risks truly were and how they applied to more typical breast cancer cases.
A study of newspaper coverage in the United States, Canada and the United Kingdom found that while news stories discussed genetic testing and the medical options available to women at high risk of breast or ovarian cancer, they often failed to mention how rare Jolie’s condition was or that her case couldn’t be applied to most breast cancers.
A national survey found that three out of four American adults were aware of Jolie’s double mastectomy, but fewer than 10 percent had the information needed to compare her risk of breast cancer to that of an average patient.
The wave of calls that hit KU Hospital in 2013 was often from women wanting to know if they they were at risk. Many weren’t. “You can have too many people call in, and not necessarily the right people,” Klemp said.
Wagner said she has “talked (patients) down from the ledge” after they’ve asked for mastectomies or even double mastectomies when they lacked the genetic risk or a family history of breast cancer, and less radical, breast-conserving surgery was appropriate.
Even so, some women lacking BRCA mutations do choose double mastectomies as a preventive measure, Wagner said. “There’s a huge fear in a lot of women of ever having breast cancer again. They want to do everything they can to get control of their lives.”
But for women with BRCA mutations, Wagner makes what she says is the standard recommendation: either a mammogram and MRI scan every year or a double mastectomy, as Jolie had. With few exceptions, women in her practice opt for the mastectomies.
The national conversation, which Jolie’s decisions have prompted, brings the topic of cancer and decision-making to light, said Heidi Coulter, program specialist with Gilda’s Club Kansas City, which provides emotional and social support for anyone affected by cancer.
“It kind of sparks the ‘Wait a second, is that something I need to know about?’” said Coulter. “Just the publicity of it provides the awareness that it’s a possibility and women have these options.”
Through a program called Open to Options at Gilda’s Club, Coulter provides assistance for patients facing treatment decisions. She sits with them and helps map out their goals and questions they have for their physicians.
The list of questions they create allows the patient to better communicate her needs and concerns at doctor appointments.
“We’re talking about clarifying their choices,” Coulter said. “Clarifying the questions they need to ask that are tailored by their goals. ... It’s really an empowerment so they understand they are completely a voice in their own decision-making.”