CHICAGO – Lindsay Avner is no shrinking violet. She’s a bright pink whirlwind, with a closet full of dresses cut from that very color and a cancer-fighting organization she named for it.

Bold yet calculating, she is the nice girl who knows how to get what she wants, and how to get away with saying things others couldn’t, or wouldn’t.

“Mind your melons,” Avner, 28, tells any young woman who will listen. “Touch your ta-tas.”

“Remember to check in with ‘the girls’ every so often.”

It is an edgy approach that sometimes raises eyebrows, at least outside the young demographic she’s trying to reach — not to mention the disapproval of some breast cancer researchers who don’t necessarily think that self-exams are the most effective approach for detection.

But they’re missing the point, Avner says. Self-exam is one tool, a way to get her peers talking about a topic they often avoid, or think no one else understands: their breast and ovarian health.

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It appears to be working. Her fledgling Bright Pink organization now has 10 chapters across the country and the kind of fundraising success in a recession that would make most nonprofit executives envious. Sponsors include major brands, from Wrigley’s Orbit White gum and Vespa scooters to a line of pink gym equipment sold at Sports Authority.

As she likes to say, “This is not your mother’s cancer organization.”

Nor is this a battle that Avner necessarily chose.

Rather, it chose her.

DISEASE DECIMATES FAMILY

The realization that cancer would forever shape her life came early on, as young Lindsay Avner looked around the dinner table at family gatherings and saw very few women, especially on her mother’s side.

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Her maternal great-grandmother and grandmother died of breast cancer one week apart, when Avner’s own mother was only 18.

Through the years, two of her mom’s aunts and a cousin also died of the same disease. Then, in 1994, when Avner had just turned 12, she remembers coming home from school and seeing her father’s car in the driveway of their home in Bexley, Ohio, a suburb of Columbus.

“Hi, honey,” her mom, Wendy Avner, said in a gentle tone, asking her daughter to sit down with them. “We’ve got something to tell you.”

Her mother had breast cancer, too.

Young Lindsay developed superstitions: making sure she brushed her teeth and hair and washed her face in the same order each night so her mother wouldn’t die.

“It was my way of trying to control a situation I couldn’t control,” she now says.

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Then, 10 months later, her mother was diagnosed with ovarian cancer, as well.

“Lots of times, I felt guilty. I felt like I had stripped her of her childhood,” says Wendy Avner, now 58.

But Lindsay took it on almost as a challenge. high school, she had half the students at her school walking to raise funds for Susan G. Komen For the Cure. Then, they challenged other high schools in the Columbus area to do the same. the time she was a sophomore at the University of Michigan, the High School Team Challenge, as it was known, was getting national recognition.

Then, in 2005, her mother underwent genetic testing and was informed that she had a mutation associated with breast and ovarian cancer.

Lindsay, who had graduated from college days before, was angry that her mother had been tested. “It was my own control issues. But I felt like she’d shot off the gun and said ‘Go!’ and I was suddenly in a race I didn’t want to be in,” she says.

Still, she also decided to have the test. And just as she feared, she had the same mutation in the BRCA1 gene. For her, it meant she had up to an 87 percent chance of developing breast cancer and a 54 percent chance of getting ovarian cancer.

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She was only 22.

A PREVENTIVE MASTECTOMY

Avner attempted to get on with her life. She got a job in brand management with Unilever, moved to a Chicago high-rise, threw herself into work and dated — almost with a vengeance. She was certain she needed to find a husband and start a family before it was too late.

She began getting debilitating migraines: “In hindsight, it was all this nervousness. It was, ‘You’re going to get cancer. You gotta hurry up.’ “

This was no way to live her life, she says. So she started looking for a surgeon who would consider a bilateral prophylactic mastectomy, a preventive procedure that would remove her breast tissue and replace it with implants.

Eventually, she went to Memorial Sloan-Kettering Cancer Center in New York City, where her mother had undergone breast surgery, and approached Dr. Patrick Borgen, the first surgeon “whose jaw didn’t drop when I said I wanted to do this,” Avner says.

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Borgen had known Avner since she was 12. She’d watched her mother go through this process, knew more about breast cancer and its treatment than most people twice her age, Borgen says.

“Without any question, she came to the decision as educated and as prepared as any patient I’ve ever encountered in my practice,” says Borgen, now chairman of surgery at Maimonides Medical Center in New York, where he heads the Brooklyn Breast Cancer Project.

The procedure, because of her age, became big news. TV networks contacted her. Some in the medical field also criticized Borgen, who remains steadfast in his opinion that women in Avner’s position should be given all their options and allowed to choose what’s right for them.

But for Avner, who had her mastectomy in the summer of 2006, there are no regrets.

Her desire to have children is the only reason she’s waiting to have her ovaries removed, probably at age 35.

BREAKING THROUGH THE ISOLATION

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Avner emphasizes that her story is only one among many. Still, if she hadn’t had the mastectomy, Bright Pink may have never happened.

Because of the surgery, young women started writing her letters. Many of them had similar family histories but had felt isolated, as if they were the only one among their peers who had to worry about breast and ovarian cancer.

In the letters, Avner saw a need that wasn’t being filled.

While still working at Unilever, she launched a small website in early 2007, known as Bright Pink even back then. Through it, she organized yoga parties and cooking classes with a growing network of young women in Chicago who were looking for support and information about breast and ovarian health.

Interest in the site grew quickly, and Avner found herself working seven days a week, a pace she couldn’t maintain. So a little over two years ago, she made the decision to quit her job to work full-time on Bright Pink.

In Chicago, Avner quickly made a name for herself, dubbed by local magazines as an “It Girl” and a “Woman to Watch.”

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Her background in brand management was one of her biggest assets. In almost every photo taken in her role as executive director, she wore one of those bright pink dresses, all the while maintaining a laser focus on her original mission: to provide education, support and community for young women who have a high risk of getting breast and ovarian cancer.

And meeting those young women on their terms.

Bright Pink volunteer Kristina Hernandez met Avner for the first time at a restaurant in San Antonio, Texas, last winter. Hernandez, now the Bright Pink San Antonio chapter “ambassador,” is a 36-year-old mother of three whose own mother died from ovarian cancer two years ago. Genetic testing determined that Hernandez was at risk, too.

Hernandez was planning on having her own breasts and ovaries removed, so the conversation quickly turned to Avner’s mastectomy.

“Do you want to see my boobs?” Avner asked.

“Kinda,” Hernandez replied. “Is that weird?”

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They went to the bathroom, where Avner lifted up her shirt and let Hernandez inspect her breasts and scars, knowing that Hernandez herself would soon have scars like those. They talked openly about the procedure.

Hernandez knows the scene might seem a bit odd. “But it was really very comforting,” she says.

She knew Avner understood.

HER DREAM: TO BE ‘AMAZING’ MOM

This fall, Bright Pink expects to bring in about $400,000 from donations and sponsorships, nearly 60 percent of its budget.

“My dream sounds kind of cheesy, but I want to be a really amazing mother. I want to be a great wife. I want to live a life where I give back constantly.”

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One day, she also envisions handing Bright Pink over to another “spunky twentysomething.”

“I want it to all work out,” she says. “Isn’t it supposed to be that if you put enough good out into the world, it comes back to you?”

Her mother has gotten over the guilt she felt, not only for her daughter’s missed childhood, but also for passing on the cancer risk.

“Would she be the person she is today if she hadn’t had this experience?” Wendy Avner asks.

“Sometimes things happen for a reason.”

 


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