Sep. 4--CHAPEL HILL -- There are still days when Klara asks when the scars on her mother's breasts are going to go away.
"This is what Mommy looks like," Alicia Altmueller must gently tell her 6-year-old. "This is who I am now."
Not that it's easy for her to say -- or even believe.
Altmueller found out two years ago that she was a carrier of the BRCA1 gene, of which certain mutations can lead to an increased risk for breast and ovarian cancer. It's the same gene for which actress Christina Applegate tested positive, leading to her decision to undergo a double mastectomy this summer.
Altmueller, 37, made the same choice after hearing the numbers: For getting breast cancer, her chances were 87 percent; ovarian cancer, 50 percent.
Each year, more than 192,000 American women are diagnosed with breast cancer. According to the National Cancer Institute, less than 10 percent of these women have a hereditary form of the disease, like that found in the BRCA1 gene, or its sister, BRCA2. Up to 85 percent of women with the altered genes will develop breast cancer, compared to 13.2 percent of the general population. That's about 6 times more likely.
The chances that breast or ovarian cancer is associated with either of these genes are highest in families with a history of multiple cases of breast cancer, multiple cases of other cancers or families with an Ashkenazi Jewish background, an ethnic group that is five times more likely to carry the gene mutation than other populations.
Altmueller met all the criteria.
"After I found out I had the gene, I would stare at myself in the mirror every day and wonder, 'Is it there yet?'" she said. "Cancer was knocking on my door."
Tracey Leedom, a certified genetic counselor at Duke University, said the number of referrals for BRCA screenings has increased every year. But the vast majority of women test negative for the gene. Because of high costs and potential issues with health insurance coverage, being screened for the gene is not recommended for everyone.
Doctors won't screen anybody before the age of 18 because of the potential psychological effects such news can have and also to ensure a person can make his or her own decisions about the results.
Not an easy decision
Because she already had two daughters, Klara and 3-year-old Miriam, and was not planning to have any more, Altmueller opted immediately for the preventive surgery to remove both her breasts as well as a total hysterectomy. Her chances of acquiring cancer have decreased to less than 1 percent now, she said.
"The decision I made was very right for my life," she said. "If I were 21 with this information, I don't know what I'd do. But I'm no good to any child if I'm not healthy."
The process was long, expensive and painful. After the first surgery last year, the mastectomies, Altmueller said she couldn't look at her breasts. But her husband, Stephan, did.
"He immediately said it wasn't bad and followed it with, 'You're even more beautiful than you ever were,'" she recalled.
Despite his support, she decided to have breast reconstruction surgery. "I wanted to feel like I was before all of this," she said.
She laughs, adding, "You can go from an A to a D, but I wanted to keep them real."
Altmueller's preschool parent buddy Sheryl Emch, 44, was around during the whole process, providing meals, baby-sitting and comic relief. And then last summer, after Altmueller's surgery, Emch felt a lump in her own breast.
Emch doesn't have BRCA1 or 2, but under the guidance of her doctor at UNC-Chapel Hill, she had an ultrasound performed. The results were devastating: While she was helping her friend cope, Emch's own breasts were developing a large tumor containing high-grade cancer cells.
Having learned from Altmueller's experience, Emch had her own surgeries done but was spared from chemotherapy or other radiation treatment.
She opted not to get breast reconstruction surgery -- a decision that puzzles many, she said.
"I'm comfortable with my body the way it is now," she said. "[And] I didn't want to deal with the risks ... even if I could have gotten a free pair of boobs."
Even Altmueller isn't sure she would get the silicone reconstruction again, after dealing with weekly "expansion" appointments and infections.
Looking for the positive
But these decisions have forever altered the women and the way they will raise their own daughters, they both agreed. Emch is the mother of two children, Sadie, 9, and Noah, 6. Before long, Sadie will be a teenager, Emch noted, and the thought of not being society's physical ideal of a woman for her daughter can be painful.
"Breasts are so important to society, and I'm finding it more bizarre," she said. "It definitely has affected my sense of mortality and womanhood."
But she's trying to turn a negative into a positive, Emch said. She's teaching her daughter that "boobs" don't a woman make.
There are still nagging worries, Altmueller admitted. "Am I really a woman? Will my husband still feel like his wife is intact?" But she agreed with Emch. "Just because you don't have your ovaries, doesn't mean you aren't a woman."
Both women have been spending the last year volunteering at Jewish organizations and training for a 60-mile fundraising walk: the Breast Cancer 3-Day on Oct. 3-5 in Washington, D.C. Together they've raised almost $25,000 for Susan G. Komen for the Cure.
"It's so girls like me don't get boo-boos like you," Klara once explained to Altmueller.
Altmueller said she felt proud. Her daughter understood.
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