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Jolie admired for bravery in mastectomy revelation

Updated May 15, 2013
FILE – This March 8, 2012 file photo shows actress Angelina Jolie at the Women in the World Summit in New York. — AP Photo
FILE – This March 8, 2012 file photo shows actress Angelina Jolie at the Women in the World Summit in New York. — AP Photo

NEW YORK : “I hope that other women can benefit from my experience,” Angelina Jolie wrote in a powerful op-ed article Tuesday, explaining her decision to go public with having her breasts removed to avoid cancer.

But amid the accolades for the film star’s courageous revelation, doctors and genetic counselors were careful to note that her medical situation — an inherited genetic mutation putting her at high risk of breast and ovarian cancer — was very specific, and that her course of action made sense for only a small category of women.

Still, they hailed her bravery and said that she would surely help increase awareness — and thus, perhaps, help save some lives.

“Having this conversation empowers us all,” said Rebecca Nagy, agenetic counselor who works frequently with women who test positive for a defective version of the BRCA1 gene, as Jolie did. “It’s wonderful what she’s done.”

In a stunning op-ed piece in the New York Times, Jolie, 37, began by speaking of her late mother, Marcheline Bertrand, who died of cancer at 56, before she was able to meet most of her grandchildren.

The actress revealed that beginning in February, she underwent three surgeries — which she succeeded in keeping secret from the public — in which her breasts were removed, and later replaced by implants.

“I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made,” Jolie wrote. “My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.”

The actress also hinted that she might, at some point, have her ovaries removed, saying that she had “started with the breasts” because her risk of breast cancer was higher than that for ovarian cancer. She did not say how long ago she was diagnosed with the faulty gene.

While admiring Jolie’s straightforwardness, cancer surgeons and others in the medical community were quick to point out that hereditary cases of breast cancer account for only about 5 percent to 7 percent of all cases diagnosed each year. And those connected to the BRCA1 and BRCA2 genes are an even smaller group.

And so, women shouldn’t just run off and get tested for those genes, said Dr. Robert Shenk, medical director of the Breast Center at the University Hospitals Case Medical Center in Cleveland.

“My worry is that people will be inappropriately tested,” said Shenk. “Awareness is great, but people shouldn’t just run in off the street and get a test.”

Instead, he said, genetic counseling, including a close review of a patient’s family history, is crucial.

Nagy, the genetic counselor, who is also president of the National Society of Genetic Counselors, agreed.

“The clues are in the family history. Has there been cancer in multiple generations?” she said. “Are there clusters of cancers, like breast and ovarian, on the same side of the family? Has the cancer been diagnosed at an early age — under 50?”

If those factors exist, Nagy said, she conducts a thorough risk assessment with the patient. And if testing is warranted, there still needs to be some thought beforehand as to what one might do with the information.

“It might not necessarily be surgery,” Nagy said. “It might be much more frequent screenings. Surgery isn’t right for everyone.”

That’s the decision that Gabrielle Brett made — at least initially. Brett was only 23 when she tested positive for the BRCA1 gene. She had just met her future husband, James, a month earlier. She wanted to have a family, so she waited.

But at age 29, her husband said she shouldn’t wait any longer. She should have her breasts removed before they had kids, even though she wouldn’t be able to nurse them. She ultimately agreed. She had the surgery and then had two children. Now 35, she is two weeks from her due date with her third.

Brett woke up in the middle of the night Tuesday, read about Jolie’s article on Facebook, and excitedly woke her husband. “It’s amazing to hear that someone so famous went through the same thing,” she said in a telephone interview. “It makes me realize we are all on the same journey.”

Brett, who lives in Shaker Heights, Ohio, also figures that Jolie went through some tough moments, however serene she sounded in her article.

“I’m sure it wasn’t quite so simple,” she said. “There’s sadness, anger, fear. I did a lot of crying alone in the car. But once I had the surgery, I felt a huge weight come off of me. I was no longer worrying whether there was cancer growing inside me somewhere. I felt nothing but relief.”

And, she said, it was crucial that she was accompanied throughout her journey by “my own Brad Pitt” — her husband, who was there through every moment, as Jolie says partner Pitt was for her at the Pink Lotus Breast Center in southern California.

There is one part of the journey Brett has not tackled yet: removal of her ovaries. That, she said, will come a bit later, when she is 40.

Doctors stress that no one solution is right for everyone who tests positive. And even for those with a risky family history, it’s not necessarily always right to test right away, they say.

“You don’t necessarily want to test an 18-year-old, sending her into a panic at such a young age,” said Shenk. “You might consider that she’s unlikely to get cancer in her 20s. You would maybe test her later.”

Another potential downside to the testing: the cost, which can reach $3,000, though it’s usually covered by insurance and there are programs for women who can’t afford it.

And some women might simply not be prepared for the results, said Dr. Eric Winer, head of the breast program at the Dana-Farber Cancer Institute in Boston. “Once you get the information, you have to be able to deal with it,” he said.

If one does test positive, Winer stressed, it could be a reasonable solution to undergo intensive surveillance with MRI tests and mammograms. Or, some women choose to remove only their ovaries, which in pre-menopausal women seems to reduce the risk of breast cancer, too.

But in Jolie’s case, Winer said, it’s hard to argue with her choice of preventive surgery. “I tend to be a less-is-more doctor,” said Winer. “But I do think the choice she made is a rational, reasonable one.”

There is a risk, he noted, that with the actress’s celebrity power, people will see her choice and think it’s the only one. If they do get cancer, “most women are well-served by conservative surgery, as in a lumpectomy,” with chemotherapy and/or radiation, he said.

But any risk is outweighed by Jolie’s ability to promote awareness, Winer added. “The more people who ask their doctors about this, the better.”

Dr. Kristi Funk, founder of the Pink Lotus Center where Jolie was treated, agreed. “We hope that the awareness she is raising around the world will save countless lives,” Funk said.

Jolie’s most positive influence, some say, may be in the fact that such a glamorous woman has come forward — in great detail — to talk about how one can lose one’s breasts and still remain, well, a woman.

“I do not feel any less of a woman,” Jolie wrote in her article. “I feel empowered that I made a strong choice that in no way diminishes my femininity.”

That impressed Nagy, the genetic counselor. “For women, so much is tied to sexuality, to sensuality,” she said. “Many women feel defined by that. So for her to be such an icon and come out and say, ‘Look what I did’ — I’m hoping that prompts other women to have conversations, about their own options.” — AP

 Star’s cancer candor prompts cheers, but also caution

WASHINGTON: Cancer campaigners cheered Angelina Jolie for going public Tuesday about her double mastectomy, but warned women against rushing out to be tested for the gene mutation that threatened her life.

Not only is the BRCA1 mutation rare in the overall female population, they said, but it is also expensive to test for at a US laboratory that controversially claims patent rights to the gene.

“We don’t want everybody to go out and say, ‘I want this test’,” Otis Brawley, chief medical officer of the American Cancer Society, told AFP in a telephone interview.

“We want people to think about what their family history is, and to talk to their doctor” who might refer them to a genetic counselor to determine if testing is necessary, Brawley said.

“Women who have first-degree relatives – that is a sister or a mother – who had breast or ovarian cancer at a young age should especially have these conversations,” he said.

“All women should not be tested for this gene. It is not that common,” said Los Angeles-based surgeon, author, breast cancer researcher and leukemia survivor Susan Love.

“The people who should consider being tested are the ones who have had a lot of breast or ovarian cancer in their families,” she told CNN.

In Jolie’s case, the mother of the 37-year-old Oscar-winning actress and UN humanitarian activist — star of such action films as “Salt” and “Lara Croft:

Tomb Raider” – died of ovarian cancer at the age of 56. Writing on the op-ed page of The New York Times on the eve of the Cannes film festival, where she is a red-carpet favorite, Jolie said genetic tests had established that she was carrying a “faulty” gene known as BRCA1.

“She’s very brave to speak out,” said Katherine McLane, vice president for communications at Livestrong, the cancer charity founded by cyclist and cancer survivor Lance Armstrong before his fall from grace in a doping scandal.

But in a telephone interview with AFP, McLane voiced hope that Jolie’s experience would also generate “more attention about affordable health care for all women.”

In a little-noted part of her op-ed, Jolie, one of Hollywood’s highest-paid stars, decried the fact that a BRCA1 test – which costs more than $3,000 in the United States – is out of reach for many women around the world.

Myriad Genetics is the only US lab that offers the test, and it is at the heart of a US Supreme Court battle over its claim of patent rights to BRCA1 and BRCA2. A ruling is expected in June.

On the NASDAQ stock market Tuesday, shares in Myriad Genetics leaped four percent on news of Jolie’s article to $34.45, its best level since mid-2009, before easing back.

“We strongly believe appropriate use of many of our diagnostic tests can help reduce illness, hospitalizations and other costly interventions, and potentially lower health care costs,” Myriad Genetics said in a statement.

It declined to say whether it was the lab that tested Jolie. Several facilities in Europe offer the same test, according to the American Civil Liberties Union, which is challenging Myriad Genetics’ patent claim in court.

Overall, cancer death rates in the United States have been declining among both men and women since the early 1990s, according to the National Cancer Institute, a US government agency.

But while 12 per cent of all US women will develop breast cancer at some point, the chances are five times greater for the few with a BRCA1 or BRCA2 mutation, it says on its website (

Both mutations can also turn up in men, ramping up their risk of breast, pancreatic, testicular and prostate cancer. — AFP