Lindsay Avner had a preventive double mastectomy in 2006 because of her genetic risk for breast cancer.

Lindsay Avner had a preventive double mastectomy in 2006 because of her genetic risk for breast cancer. (Nancy Stone, Chicago Tribune)

There are no rigid guidelines for when a patient should or should not have a double mastectomy. Ultimately, it's a very personal decision for each patient, who must weigh the risks and benefits for themselves.

Cancer surgeons and doctors interviewed by the Tribune said it was reasonable for women such as Avner who had tested positive for the BRCA1 and BRCA2 genes and had a high risk of breast cancer to have a preventive double mastectomy.

But it's an option Citrin said he would recommend only after consulting a breast surgeon, an oncologist and a genetic counselor.

Tuttle went even further, saying that for young women with the mutation, he'd favor close surveillance, to detect any malignancy early, when it is most treatable.

"There are good options that allow you to ... lead your life a little," he said.

For women without the gene mutation who are considering removing one or both cancer-free breasts, Citrin advised surveillance and preventive drug therapy. A double mastectomy would be an aggressive approach and unnecessary, according to clinicians and published medical reports.

But it's women with cancer in one breast and considering double mastectomy who give clinicians the most concern. Some oft-cited reasons for the uptick range from improved reconstruction techniques to less stigma surrounding the surgery, as women announce publicly what was once only whispered.

Celebrities Giuliana Rancic, Christina Applegate and Sharon Osbourne have all talked openly about their operations. Miss Washington, D.C., Allyn Rose, 24, disclosed in January that she would have both breasts removed after the Miss America pageant. She had not had any genetic testing but didn't want to take any chances with the disease that killed her mother, who was diagnosed at 27.

"I don't have the luxury ... of waiting around," she told reporters.

One 52-year-old Chicago lawyer said it's not about age or even data. After being diagnosed with early stage cancer last year, she chose to have the second breast removed for peace of mind.

"I didn't want to always have that nagging worry ... that lingering doubt. Plus, I knew the results of reconstruction would be more symmetrical," said the woman, who asked that her name not be used. "This is just what smart people do. ... When there's a problem, we take care of it."

Avner, now 30 and single, understands the desire to take charge. Her story, which first appeared in the Tribune in 2006, ricocheted around the country. She was interviewed by numerous media outlets and appeared on the "Today" show six times. She heard from hundreds of women who had tested positive for the gene mutation and were trying to navigate the same bewildering landscape.

"The outpouring of response was amazing," said Avner, whose mother is a cancer survivor. "People were just so happy to have a connection ... to be able to talk about it with someone going through the same thing."

She also received some negative response from people who said, "How dare you make a decision like this when you don't even have cancer?" or "Would someone please tell Lindsay Avner that she's not God and she doesn't control everything?"

Looking back, some of her fears about her future never materialized.

"I never looked at myself as disfigured or terribly different," said Avner, who had reconstructive surgery.

"The men I have dated have obviously had that initial curiosity of what it will be like. But instantly, the response is usually, wow, they look good. More than anything, the scars ... have always served as a powerful reminder of just how strong I am."

The reaction to her decision inspired her to start a nonprofit that encourages young women to "be bold" and "take action to detect these diseases at early, non-life-threatening stages, or reduce your risk of developing them altogether." She launched Bright Pink in 2007, eventually quitting her marketing job to run the nonprofit full time. The organization now has 10 employees and 50,000 members.

Yasemin Zeytinoglu, 28, found her way to the group as a newcomer to Chicago. Her own mother died of breast cancer at age 45, and her sister was diagnosed at 21. She called it "a valuable resource" while she wrestled with her destiny. No one pushed one regimen over another, she said.

Ultimately, the financial analyst/yoga teacher decided on stepped-up screenings, including annual mammograms and MRIs.

"But that could change, depending on my circumstances," Zeytinoglu said. "Because this is going to be a lifelong journey."

brubin@tribune.com