Removing the Doubt
Women with cancer in one breast or not at all tell why they chose to have preventive double mastectomies.

By Rachel Saslow
Washington Post Staff Writer
Tuesday, April 7, 2009

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.

* * *

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.

After six rounds of chemotherapy to shrink the cancer, Hansen asked for a double mastectomy rather than a single. "I just thought, 'This is stupid; so many times I've heard that it comes back in the other breast,' " Hansen said. "I was very small-chested, so it was pointless to keep one tiny little boobie." (Breast cancer cannot leap from one breast to the other.)

Statistics to help women like Hansen make the decision can be complicated for an anxious patient to understand.

A woman who has no cancer but has a BRCA mutation has a 65 to 80 percent risk of developing breast cancer in her lifetime, according to Lillie Shockney, administrative director of the Johns Hopkins Breast Center, who has counseled hundreds of women with the disease. That risk falls to 5 percent after a preventive double mastectomy.

A woman who has early-stage breast cancer but no BRCA mutation has a 5 to 20 percent risk of a local recurrence after a lumpectomy and radiation. That goes down to 1 percent with a double mastectomy.

Why does any chance remain at all? Shockney explains it is virtually impossible to remove every breast cell, and "just a few remaining cells is enough to give breast cancer a place to grow." The risk remains even after a rare "radical" mastectomy, which involves removing pectoral muscles and lymph nodes.

Women who have had cancer in one breast and have a BRCA mutation, such as Hansen, have a risk of 3 percent per year of developing cancer in the opposite breast, says Todd Tuttle, the lead researcher on the 2007 University of Minnesota study, and the risk is cumulative. That may help explain why younger women are more likely to choose the bilateral procedure than older women. They're looking ahead to 30 or 40 more years of life, and the calculations begin to stack up against them.

However, the risk of developing cancer is a separate question from whether the surgery can extend a patient's life.

Tuttle says that in most cases, a woman receiving a diagnosis of breast cancer has the same chance of "survival" -- defined as living another five years -- whether she has a lumpectomy with radiation or a double mastectomy.

After Tuttle's 2007 study was published, he heard from lots of women about the reasons they had had the surgery and the psychological aftermath. The e-mails ranged from "I did this five years ago and I regret it" to "I knew it wasn't going to affect my breast cancer survival rate, but I wanted my breasts to look symmetrical." Others expressed relief at not expecting to face mammograms or biopsies again.

Cynthia Gilman, a lawyer who lives in Alexandria, initially considered having a lumpectomy after her 2003 breast cancer diagnosis at age 43, but a conversation with her surgeon changed her mind. Gilman had calcifications in both breasts (mineral deposits that may or may not indicate cancer) and dense breast tissue, making detection of new tumors more difficult. Her surgeon told her, "I don't know how I'm going to monitor you."

"I didn't want to live my life not knowing if every little lump or bump was cancer," Gilman says. "I chose not to do that.

Six years down the road, she says she is 100 percent happy with her decision and hasn't regretted it for one second.

At the Johns Hopkins Breast Center, Lillie Shockney has counseled many women with dense breast tissue who opt for a double mastectomy. Despite having regular mammograms, some of them had found on their own a lump that turned out to be cancerous.

"The breast tissue is white, the tumors are white, and we can't find a polar bear in a snowstorm," Shockney says.

* * *

During Hansen's double mastectomy, doctors removed seven lymph nodes under her right arm; one tested positive for cancer. Though the cancer appeared to be gone for 2 1/2 years, she says she never deluded herself into thinking she was safe, partly because of that one lymph node. In 2003, her doctors saw a shadow on a CT scan of one of her lungs. Maybe it's pneumonia, Aulner remembers hoping. But it was the beginning of another tumor.

Aulner, a nursing student who lives in Las Vegas, watched her sister battle cancer a second time. And in 2004 she made an appointment for a BRCA test. She paid about $500 out of her own pocket: If it came back positive, she didn't want her health insurance company to know.

It was a tense wait. Aulner remembers going on walks with her husband, Dwane, to talk about what they would do with a positive or a negative result. After about a week, she picked up the results at her OB-GYN's office. She took the sealed envelope into the parking lot and into her car, and opened it alone. Positive. She was facing up to an 80 percent chance of developing breast cancer during her lifetime.

"I'm a person of action," she says. "For me, it was very easy. Let's move forward."

She went back to her OB-GYN and asked what to do. "He basically said, 'I've never had anyone like you before,' and that was it," she recalls. "I had no guidance." She called several surgeons in Las Vegas, and none of them would consider performing a preventive mastectomy. She ended up having the surgery in New Orleans, at a practice that she found online.

Aulner's sister had tried implants, but they became infected and she opted for prosthetic breasts. Aulner chose a DIEP (deep inferior epigastric perforator) flap reconstruction. In this surgery, breasts are reconstructed from the patient's own abdominal skin and fat. It took three operations, including one that took 12 hours and a five-day hospital recovery, but Aulner says it was worth it for what she hopes is "a permanent solution."

Aulner's husband, parents and close friends were "totally on board" with her choice, she says. So was her sister, even though her own double mastectomy had not prevented her disease from recurring. Some acquaintances, however, were perplexed. A friend of a friend asked her, "Women don't die of breast cancer anymore, do they?"

* * *

They do. Kristine Hansen is almost certainly going to die of breast cancer.

In the past eight years, besides the double mastectomy, she has had her ovaries and her uterus taken out. When breast cancer spreads, it usually goes to the lungs, bones and liver: Hansen has three tumors in her liver and seven in her brain. She undergoes "maintenance chemotherapy" every other Monday, which will extend her life but not cure her disease. (She calls it "chemo lite.") She has half of her eyelashes and eyebrows and no hair on her head.

During a phone interview one Wednesday afternoon, Hansen was low-key, recuperating from the chemo two days earlier. She was home folding laundry, not wearing her prosthetic breasts or a wig.

"I look like an 'it,' " she said. "I don't look like a girl."

But usually she stays upbeat and describes a rich life. Since her diagnosis, she and her husband have visited France and Italy; she hopes to go to Spain and Portugal next. For her birthday two years ago, her family gave her a Volkswagen Beetle. "I don't want to die driving a minivan," she says.

Aulner flies out to see her sister as often as she can. They always schedule visits for "the good weeks," weeks that Hansen hasn't had chemotherapy. Hansen, who says she likes "girly" clothes and has a wardrobe of 15 wigs, likes to shop at BCBG. Aulner and Hansen's kids trail along, stopping for ice cream.

Three years after her genetic testing, Aulner decided there was one more cancer risk she could eliminate. She had learned that, according to the National Cancer Institute, a women with an altered BRCA1 or BRCA2 gene has a 16 to 60 percent lifetime risk of getting ovarian cancer, compared with 1.7 percent for the general population.

Aulner went to her doctor and asked him to remove her ovaries. She had the operation in December 2007.

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