At age 23, Lindsay Avner took charge of her genetic fate by electing to have her healthy breasts removed before cancer could strike first. Six years later, the North Side woman has zero regret, she said.
"I feel so fortunate to have had this opportunity that generations of women before me never had," said Avner, who was 11 when her mother was diagnosed with breast cancer, the same disease that claimed the lives of her grandmother, great-grandmother and others in her family tree.
So, when Avner tested positive for the gene mutation that increased her odds of becoming another victim, she opted for a double mastectomy. She was heralded as a "pioneer" by her physician at Memorial Sloan Kettering Cancer Center in New York.
The decision to remove disease-free breasts is not nearly as controversial as it was back in 2006, when Avner had surgery. Many more women have disclosed that they have made the same tough decision either because of hereditary factors or finding early stage cancer in one breast, including a recent Miss America contestant.
Still, some clinicians think the pendulum has swung too far for women who do not have the gene mutation, with more of them opting for double mastectomies as the first line of defense. The increase is attributed to a number of factors, including a barrage of health campaigns that cause some women to overestimate risks and the misconception that removing both breasts guarantees you will never have breast cancer, experts said.
The rate of prophylactic — or preventive — mastectomy among U.S. women with cancer in one breast rose by about 150 percent from the late 1990s to the mid-2000s, according to multiple research studies.
Dr. Todd Tuttle, chief of surgical oncology at the University of Minnesota, said the trend shows no sign of slowing. A study by Tuttle published in the Journal of Clinical Oncology showed that about 1.8 percent of women with cancer in one breast had a double mastectomy in 1998. The percentage rose to 4.5 percent in 2003.
Tuttle, who continues to collect data on the subject, estimated that, 10 years later, 30,000 of the 200,000 women diagnosed each year with breast cancer will opt for a double mastectomy.
No one tracks how many women without cancer are choosing double mastectomy as a preventive measure, multiple researchers said. But anecdotally, doctors said more and more patients are asking about it, and many are following through with the procedure.
"It's very strange ... given how women fought so hard to conserve their breasts in the 1970s and '80s," Tuttle said. "Now, this seems to have gone in the total other direction."
About 1 in 8 U.S. women — or roughly 12 percent — will develop breast cancer. That's compared with 60 percent of women, such as Avner, who have inherited a harmful mutation in human genes that are known as tumor suppressors, according to the National Cancer Institute. Even without the genetic mutation, the breast cancer risk roughly doubles if there's a strong family history, such as a mother, sister or daughter who has been diagnosed with the disease.
Most preventive double mastectomies in the United States are being chosen by young women in the earliest stages of the disease, clinicians said. But this group has an excellent prognosis without a double mastectomy, said Dr. Seema Khan, professor of surgery at the Feinberg School of Medicine at Northwestern University, who like the other physicians interviewed wants patients to have a better understanding of the risks and benefits of the procedure.
"Women with unilateral breast cancer ... are coming into doctors' offices with disturbing frequency with the declared intent of undergoing a 'double mastectomy' so that they will 'never have to do this again,'" Khan wrote in a 2011 editorial in the Journal of Clinical Oncology.
"This has us really scratching our heads," she said last week. "There's no medical evidence that a bilateral mastectomy for this group increases length of life or survival rates ... or has any better outcomes than breast-conserving treatment and radiation," which is the standard.
Typically, a double mastectomy is a four-hour surgery versus one hour for a breast-conserving procedure, also called lumpectomy. It carries a significantly higher risk of surgical complications, such as infection and bleeding, than a single mastectomy, Khan said.
Many who undergo mastectomy in the unaffected breast do so because they mistakenly think they'll never have to worry about a recurrence. "That's a fallacy, because a malignancy can return on the skin of the (chest) wall," Khan said.
Several factors are driving the phenomena, including pervasive health campaigns that are helpful but also can provoke unnecessary anxiety. The risk that a woman with breast cancer will develop cancer in the second breast is about 5 percent over a 10-year period, but according to a University of Minnesota study, women estimate their chances at about 30 percent.
"Breast cancer awareness is a good thing, but women just get pounded with these messages all the time," Tuttle said. "When the NFL has 'pink days,' you know it's over the top."
Dr. Dennis Citrin, medical oncologist for Cancer Treatment Centers of America, also cited the fear factor.
"Women tend to overestimate their risk. But breast cancer is the most curable of cancers that we see — and it's important that women know that before they remove any organ."
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."