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Angelina Jolie’s decision to have her ovaries taken out was spot-on, doctors said Tuesday.
Jolie announced via a commentary in the New York Times that she’d had her ovaries and fallopian tubes removed — something she had previously said she was almost certainly going to do. Experts in genetic cancers were not surprised.
“It’s the standard of care for women with BRCA1 or BRCA2 mutations,” said Dr. Huma Rana Clinical Director, Cancer Genetics and Prevention at the Dana-Farber Cancer Institute in Boston. “We had expected that she would be having the surgery.”
The main reason for Jolie to have the testing and surgery is her family history.
"Family history is the most essential tool that is used by physicians to determine who should have testing, so the most important thing that a person can do is know their family's cancer history," said Dr. Jason Knight of the Cleveland Clinic.
“I don’t think there is any surprise that she undertook this."
Jolie has a much higher-than-usual risk of breast and ovarian cancer because of genetic mutations she inherited. She has a particularly harmful mutation of the BRCA1 gene that gave her an 87 percent risk of breast cancer. She had both breasts removed two years ago.
While that can be a controversial decision, it wasn’t in Jolie’s case.
Mutations in this gene can give women a 65 percent lifetime risk for breast cancer and a 39 percent risk of ovarian cancer. Jolie's mother had breast cancer and died of ovarian cancer, and her maternal grandmother also had ovarian cancer. Less than two weeks after Jolie revealed she'd had a double mastectomy, her aunt, Debbie Martin, died at age 61 from breast cancer.
“I don’t think there is any surprise that she undertook this,” said Dr. Don Dizon, director of The Oncology Sexual Health Clinic at Massachusetts General Hospital Cancer Center.
“I think we can applaud her for being so forthcoming and sharing her medical and family risk history. It helps my patients to normalize the experience they are having, and to mitigate any stigma,” added Rana.
Studies have shown that for women with BRCA mutations, having the ovaries removed can reduce their risk of ovarian cancer by as much as 80 percent.
There’s not any single BRCA1 or BRCA2 mutation. “There are countless mutations,” Rana said. The mutations that matter are those that affect the genes’ function, which is to repair breaks in the DNA.
“If someone has an error in a gene that causes the gene to not function, then those individuals are at an increased risk for both breast and ovarian cancer.”
Why not just keep a close eye out for cancer? There’s no good screening test for ovarian cancer, no equivalent of a Pap smear, which can detect pre-cancerous changes in the cervix. There’s nothing even close to a mammogram, which can catch breast cancer very early.
Jolie said she’d been having tests of a compound called CA-125, which often rises in women with ovarian cancer— but not always. Jolie also had ultrasound scans of her ovaries. Both were normal.
"Testing for CA-125 commonly results in false alarms," Knight said.
"If you use this test in the general population, where the risk for ovarian cancer is already quite low, those false alarms would lead to unnecessary surgeries and potential surgical harm."
It also can miss cancer. "I have seen several patients who have normal CA-125 levels and ultrasounds who, at the time of surgery, had either a small ovarian tumor or, even worse, advanced ovarian cancer at the time of surgery," Dizon said.
Jolie referred to “inflammatory markers” that may have indicated she had cancer. Rana and Dizon say they don’t know what Jolie could have meant.
“What I appreciated about her story is that she is raising awareness of hereditary breast and ovarian cancer syndromes,” said Dizon, a spokesman for the American Society of Clinical Oncology. “We are all benefiting from her highlighting what is a true issue.”
Cancer specialists and genetic counselors say they have had an ongoing upsurge of interest from people, ever since Jolie's very open discussion about her own risks two years ago.
Jane Herman of New York City has mixed feelings about it. She had her breasts and ovaries removed after learning she had a mutation of the BRCA2 gene.
"These are complex decisions with lots of nuance to them, and those things don’t translate well into sound bites." Herman told NBC News.
"For all the good that it did, it was very frustrating to hear the coverage. The sound bites just tell a tiny little bit of the story, of all the emotion, thought and energy , and everything that goes into the decision," added Herman, whose mother died of breast cancer.
"It doesn’t even scratch the surface of what’s involved with living with a BRCA mutation, and making the decision and going into the surgery," she said.
“We are all benefiting from her highlighting what is a true issue.”
Ovarian cancer is highly lethal, mostly because it’s usually not diagnosed before it has spread.
According to the American Cancer Society, ovarian cancer will be diagnosed in 21,000 U.S. women this year and it will kill more than 14,000.
“A woman's risk of getting ovarian cancer during her lifetime is about 1 in 75. Her lifetime chance of dying from ovarian cancer is about 1 in 100,” the society says.
Most women don’t need to worry about these risks. Less than one percent of the U.S. population has a BRCA1 mutation, about 0.25 percent or one in 400. It’s most common in Ashkenazi Jews — Jews of European descent —who have about a 1 in 40 chance of a harmful mutation.
But for those who do get ovarian cancer, there are few gentle treatment options. “You are talking about aggressive surgery and you are talking about 4 to 6 months of chemotherapy with all the all side-effects of hair loss, nausea, vomiting and abdominal pain,” Dizon said.
Jolie will go into early menopause, but can take hormone replacement therapy. Like many women, she opted to keep her uterus. Her genetic mutations do not raise her risk of uterine cancer. For many women, keeping the uterus gives them the future option of having children via IVF, doctors said.
NBC's Judy Silverman and Erika Edwards contributed to this story.