Karen Aulner says watching her sister Kristi Hansen (not shown) struggle… (Aulner By Tiffany Brown…)
Karen Aulner, 36, has never been given a diagnosis of cancer. She has, however, been watching her older sister fight the disease since 2000. So when Aulner tested positive in 2004 for a gene mutation that put her at high risk of breast cancer, she asked her doctor to remove both of her healthy breasts.
"My sister was the healthiest person I ever knew," Aulner says. "She's slender, she worked out all the time, she loved fruits and vegetables -- and she's dying. If I could not have that happen to me? Heck, yeah."
Aulner is one of a growing number of women threatened by cancer who have opted for a preventive bilateral mastectomy: surgery to remove both breasts. The procedure has become more common not only among women with cancer in only one breast but also for women with no cancer at all.
The choice has been driven in part by the availability of tests that can identify mutations of the BRCA1 and BRCA2 genes, which increase a woman's risk of breast cancer. It also is related to more-sophisticated surgical options, including breast reconstruction from a woman's own tissue. But to remove both breasts remains a difficult and emotional decision, one that can reassure or haunt the patient for years.
A 2007 University of Minnesota study found that the percentage of U.S. women with cancer in one breast who chose a double mastectomy more than doubled over five years, from 4.2 percent in 1998 to 11 percent in 2003. Although the less invasive procedure called a lumpectomy is still far more common, the increase means there are more women who have gone through bilateral surgery and can provide advice or an example to others.
In March, Rep. Debbie Wasserman Schultz (D-Fla.), 42, revealed she had had a double mastectomy last year at the National Naval Medical Center in Bethesda. She had received a diagnosis of early-stage cancer in her right breast in December 2007 and had a lumpectomy. Then, she tested positive for the BRCA2 mutation and, after consulting with doctors and her husband, decided to have both breasts removed. She has had seven surgeries in all, including the insertion of silicone implants and having her ovaries taken out.
This all happened quietly, while she continued representing her district and campaigning, first for Hillary Rodham Clinton and then for Barack Obama. Even her children didn't know until two days before her news conference, which she held to promote earlier testing for breast cancer.
"The doctors said I had a 65 percent chance of a recurrence of cancer in the other breast," Wasserman Schultz said in a telephone interview. "Those odds were too high for me."
Her decision paid off immediately, she said: In some of the tissue removed from her right breast, doctors found a second cancer, a type called ductal carcinoma in situ.
Actress Christina Applegate had a double mastectomy last summer, inspiring a wave of articles and talk-show discussions. The 37-year-old star of TV's "Samantha Who?" had early-stage cancer in one of her breasts and tested BRCA1-positive. "I'm definitely not going to die of breast cancer," she said defiantly in a television interview. And of the benefits of reconstructive surgery: "I'm going to have cute boobs till I'm 90."
Like Applegate, many women who have chosen bilateral mastectomy describe it as the lifting of a great burden, because they no longer have to face the stress of mammograms or feel panicky if they find a small lump during a self-exam.
Others have some regrets about the surgery, saying the psychological effects have been worse than they expected. Susan Dunn, a Baltimore-based writer, had a two-centimeter tumor in her right breast when she was 32. She chose a double mastectomy because she had two little kids and wanted to be as aggressive as possible.
Now, 14 years later, she has mixed feelings about her decision. She looks back on the experience as a six-month cancer whirlwind: Only three weeks after her diagnosis, she was in the operating room. Everything non-cancer in her life was put on hold. She lost all her hair during chemotherapy.
Eventually her life returned to normal. Her hair grew back. But her breasts? They were gone forever.
"If I had to do it again, I would do just one," she says. "I don't think I understood the permanence of it. . . . On the other side, I'm alive and I don't worry about dying."
Dunn says she has tried to dissuade other women from choosing the bilateral surgery. But for Karen Aulner, having a double mastectomy never felt like a choice.
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Aulner learned that her older sister, Kristine Hansen, had found a lump in her right breast in the fall of 2000. Hansen, now 38, had recently given birth to her third child. Her doctor wasn't concerned, Hansen recalled in a telephone interview from her home in McPherson, Kan., but 3 1/2 months later, she got a second opinion. Her new doctor told her she had inflammatory breast cancer -- the aggressive, fast-growing kind. She was given a 40 percent chance of surviving for five years.