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Breast cancer fighters applaud Angelina Jolie for sharing her story

Updated: June 16, 2013 6:40AM



For those in the trenches fighting breast cancer, it was like the shot heard ’round the world.

Actress/director Angelina Jolie’s op-ed piece in Tuesday’s New York Times — in which she wrote that she had a double mastectomy after learning that she carried a gene associated with a very high risk for breast and ovarian cancer — will help save other lives, many in the trenches declared.

“This is the kind of day we dream about,” gushed Lindsay Avner, founder and CEO of Chicago’s Bright Pink Foundation. At 23, she became the youngest patient in the country to opt for the procedure Jolie completed in April — with her partner and fellow actor Brad Pitt at her side.

“At first I was totally shocked, because Angelina Jolie of all the celebrities it could be is usually reserved and pulled back, and for her to share such a poignant, honest, vulnerable essay is remarkable,” said Avner, 31, a marketing exectuive. “For years, we’ve worked day in and day out to bring this topic to the national spotlight, and to have it take the stage is the greatest gift I could ever imagine.”

Avner saw her mother, Wendy Avner, 61, fight breast and ovarian cancer and survive. After undergoing genetic testing, Lindsay Avner learned that she carried the BRCA1 gene mutation linked to inheriting the same cancers.

Avner had been given the same lifetime risk Jolie says doctors gave her — an 87 percent likelihood for breast cancer, and 50 percent likelihood for ovarian cancer. Preventative bilateral mastectomy — the removal of healthy breasts — nearly, though not completely, eliminates risk, medical experts say.

Both Jolie and Avner followed the procedure with breast reconstruction.

“The BRCA1 and BRCA2 is a mutation that can be passed down from your mother or father. If you’re a carrier, your risk of developing breast cancer is 60 to 80 percent; for ovarian cancer, 20 to 40 percent,” said Dr. Heidi Memmel, a breast surgeon and co-director of the three-year-old Caldwell Breast Center at Advocate Lutheran General Hospital in Park Ridge.

“One of the most important things we can do and one of the biggest risk reductions is a preventative mastectomy, which reduces the risk of both cancers to less than 5 percent,” said Memmel, a cancer survivor who lost a breast to the disease.

The gene is rare. It’s estimated that between 1 in 300 and 1 in 500 of the general population carry the gene. It is prevalent in certain ethnic groups, particularly Ashkenazi Jews, of whom 1 in 40 are carriers.

“In my practice in Highland Park, I see a lot of Jewish women who are Ashkenazi coming to me for advice about this gene,” said Dr. Catherine Pesce, a breast surgical oncologist at NorthShore University HealthSystem. She hopes Jolie’s celebrity influence won’t cause women to overreact.

“I completely support Angelina Jolie’s decision. But when you hear that a celebrity is having both her breasts removed to prevent this cancer, it’s important that American women realize she’s doing so for a very specific reason,” Pesce said. “She does have this genetic risk, but it’s rare to have this gene. We don’t want to overheighten the fear that everyone has to go out and have both breasts removed.”

In her essay, “My Medical Choice,” Jolie, 37, a mother of six preteens, three of them adopted, writes about the effect her mother’s death from cancer at 56 had on her and the grandchildren her mother will never know.

“We often speak of ‘Mommy’s mommy,’ and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me,” Jolie wrote.

“I have always told them not to worry, but the truth is I carry a ‘faulty’ gene. . . . Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could. . . . On April 27, I finished the three months of medical procedures that the mastectomies involved.”

Jolie said she chose to try to prevent breast cancer — a disease the World Health Organization says will kill 458,000 people annually — because of her higher risk for that vs. ovarian cancer. She also chose to start there because that surgery — described by the actress in graphic detail — is more complex than ovarian surgery.

“It’s amazing that Angelina came out with her personal story like this. It’s an important topic that’s not talked about enough in the media and in the public,” said Dr. Marc Hurlbert, executive director of the Avon Foundation, which will hold its annual Avon Walk for Breast Cancer here June 1-2.

“The mutations are very rare, so it’s not something where doctors recommend everyone run out and get the blood test. But people should be aware of their family history of cancer, and women with the history should talk to their primary care or ob-gyne about their breast-cancer risk,” he said.

The foundation helps fund a program at Stroger Hospital that provides education on genetic cancer risks and financial help with testing.

“Ms. Jolie brought up very important points at the end of her piece about more women needing access to this testing,” Hurlbert said.

Jolie wrote: “I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible . . . and then take action.”

Avner applauds Jolie for sharing her story.

“I just felt overwhelmed with gratitude because of the number of women that will now be examining their family history, asking questions that they hadn’t asked in the past,” she said. “Angelina’s essay has created a moment in time that I feel like for years and years will have a truly spectacular, undoubtedly lifesaving outcome for many women.”

For more information, go to: www.avonfoundation.org, www.brightpink.org



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