An Oct. 19 Health article misidentified a group involved in a breast cancer patient education effort. The group's name is the National Research Center for Women & Families, not the National Center for Women & Families. The article also referred to ductal carcinoma in situ (DCIS) as a precancerous condition. Diana Zuckerman, the group's president, defines DCIS as a noninvasive cancer that can usually be treated effectively with lumpectomy and radiation rather than mastectomy. (Published 10/21/04)

A woman diagnosed with early breast cancer often leaves her doctor's office with a tough decision to make. Should she have the cancer removed or have her entire breast removed? No matter what she chooses, doctors and researchers agree, her chance of surviving is the same -- even if the cancer returns.

But more than 15 years after so-called breast-conserving surgery became a proven option, about half of the roughly 130,000 U.S. women diagnosed with early stage breast cancer each year still opt for mastectomy over lumpectomy.

Some researchers and breast cancer advocates say this means many women are getting mastectomies they don't need. So, working with the National Cancer Institute (NCI), they've developed a free booklet designed to help the newly diagnosed choose between the two surgeries. The 21-page brochure "Surgery Choices for Women with Early Stage Breast Cancer," to become available this month, aims to put a complex decision in the patient's hands from the outset.

The booklet is needed, said Washington epidemiologist Diana Zuckerman, one of its authors, in part because not every physician is up-to-date on the science of breast cancer. "If a woman asks her doctor, depending on who her doctor is, she may not get the best possible advice," said Zuckerman, president of the National Center for Women & Families.

"Not everybody reads that research, and the people giving advice are not always experts in the field."

Plus, said Zuckerman, women often need time after diagnosis to make a hard choice on treatment.

"These women are in their doctor's office and the doctor says, 'You can do this or you can do that.' They get home and they can't remember anything because they are so stressed out . . . . It's not that any of this information is a secret. It's putting it all together in a booklet which is quite different."

Said Washington breast cancer activist Zora Brown, founder of the Breast Cancer Resource Committee, "This is a document we can use."

Facing the Odds

When doctors found Brown's cancer more than 20 years ago, lumpectomy was an emerging treatment and there were no long-term data on its efficacy. Today, the now-routine operation is acknowledged as offering the same survival rate -- about 70 percent of women living at least 10 years after surgery -- as mastectomy, the surgery Brown chose.

Still, many women are confused by the odds of a recurrence -- odds that differ between the two operations. Although mastectomy patients are less likely to get cancer again, they don't live any longer, on average. That is because not all breast cancers are equally aggressive. Some tumors grow very slowly and never become fatal, while others are lethal even with early detection. So, the odds of dying may have as much to do with unpredictable nature of a single tumor as it does with the number of tumors.

In addition, the best treatment choice for early stage breast cancer often has more to do with psychology than medicine. It depends, said Zuckerman, on how a woman feels about her body, how she feels about radiation exposure and how much she is willing to risk a recurrence.

Connie Parks-Walczak, an administrative assistant from California, had to make the choice last fall. When chemotherapy failed to shrink a tumor in her breast, she was more than willing to have a mastectomy if it would increase her survival odds. But Parks-Walczak, 50, said her doctors convinced her that a lumpectomy would be equally effective. Even as the nurses wheeled her to the operating room, Parks-Walczak told them the surgeon could take off her breast "if they saw something funky." They didn't.

"My incision looks great," she said. "I guess I am happy with my decision. The one thing my doctor did tell me is that a recurrence in the breast would simply mean a mastectomy. There is a 10 percent to 15 percent chance that would happen. I can live with those odds."

Not everyone can. Last summer, Oregon innkeeper Liz Brady was diagnosed with invasive lobular cancer -- cancer that begins in the milk glands. With a family history of breast cancer, the mother of two sought guidance from a book and a Web site sponsored by a university medical center. Then she opted for a double mastectomy.

"I know losing both breasts will be traumatic, but not as traumatic as being told I have cancer again sometime in the future," she said just before her surgery. "Mine was caught early . . . but it was scary nonetheless. I do not want to experience this again and will do anything to lessen the chance."

Caution is not the only factor that leads women to mastectomies when a lumpectomy would do. Some don't want -- or don't have easy access to -- the five to eight weeks of radiation treatment that routinely follows a lumpectomy. Others don't want to face the second round of surgery that would come with a recurrence. And some can't afford the cost that outpatient radiation treatments can add to lumpectomy -- a cost not always covered by health insurance plans.

Mastectomy Profile

In general, breast surgeons agree that the overall mastectomy rate is too high, said Christine Teal, director of George Washington University Medical Center Breast Care Center.

Many were surprised, said Teal, by a recent study that found the United States had one of the highest mastectomy rates in the world. In the United States, 56 percent of early breast cancer patients had mastectomies, compared with 28 percent in France and 31 percent in the United Kingdom. Teal, who called the findings "embarrassing," said she expected the mastectomy rate will drop as patients continue to learn more about the two procedures. But, she said, poor access to radiation treatment centers will continue to be an issue for some women.

At Georgetown University Medical Center, breast cancer patients get help in making treatment decisions from a multi-disciplinary team that includes a medical oncologist, a surgeon and a radiation oncologist, said Minetta Liu, an oncologist in the hospital's breast cancer program. "The patients I see are very well-informed, and that may be a function of where we are," she said, referring to the well-educated patients and well-equipped hospitals in the Washington area. "There certainly are a number of patients [elsewhere] who don't have that luxury and are told one thing and have to go along with it."

The new brochure was written with those women in mind: patients who have not gotten the message that lumpectomy is a viable option, patients without Internet access or without the patience to sort through the more than 600 Web sites produced by a Google search for "surgery for early breast cancer."

The profile of women most likely to get mastectomies suggests they may not have the education or resources needed to make a clear choice.

For example, studies have found that uninsured and low-income women have a disproportionate number of mastectomies: That may also be because mastectomies are less expensive and more convenient than lumpectomies. Women in rural areas are also more likely to have their breast removed, possibly because they are less able to take time off work to drive long distances for intensive radiation treatment. Older doctors are more likely to recommend mastectomies and older women are more likely to have them, possibly because they may not be up-to-date on the standard of care.

The National Center for Women & Families has been active in questioning the safety of silicone breast implants, so it gets a lot of calls from women complaining about their breast reconstruction, said Zuckerman. After a while, staffers noticed that many callers had been diagnosed with ductal carcinoma in situ (DCIS), a common precancerous condition that make them excellent candidates for lumpectomies.

"There were a lot of women who had double mastectomies that never had cancer to begin with," Zuckerman said.

The center found plenty of data on variations in surgery rates from region to region, doctor to doctor and among different groups of patients, such as the insured and the uninsured. In Zuckerman's opinion, that signals that women are getting unnecessary mastectomies.

"It's not that [researchers, surgeons and activists] didn't know," she said. Rather, "it was not being talked about outside of that small circle." The idea for the brochure emerged when scientists and women's health advocates met in Washington to discuss the issue in 2001. Zuckerman said she had looked, without luck, for sponsors to help fund and distribute the brochure until she connected with the NCI. The agency had already planned a similar project, so they collaborated.

Trade-Offs

The first challenge, said Lenora Johnson of the NCI Office of Education and Special Initiatives, was to reword Zuckerman's draft document, originally written for someone at a sixth-grade reading level. Subsequent compromises between Zuckerman and NCI covered a range of topics from how much text to include to how to define early breast cancer.

The resulting purse-sized booklet outlines a six-step decision-making process that starts with "Talk to your surgeon," but advises women to "ask a lot of questions and learn" as much as they can. It also urges those in doubt to get a second opinion, explains the five stages of early breast cancer and the different surgery options. A chart compares the cosmetic, medical and logistical implications of three approaches -- lumpectomy, mastectomy and mastectomy with reconstruction. The last step asks a woman to answer a series of questions to help her choose which approach works for her.

Not everyone is satisfied with the end product.

Barbara Brenner, a patient advocate at the nonprofit Breast Cancer Action in San Francisco, thinks the brochure is so simplified that it leaves out important information. For example, she said, some women might want to consider lumpectomy without radiation. That option offers the same survival rate as lumpectomy with radiation, but a higher recurrence rate. She also disagrees with Zuckerman that the high mastectomy rate suggests that women are getting unnecessary operations.

"These claims that we're doing too many mastectomies fail to account for the intensely personal decision-making process about what to do about your breast once you have cancer in it," Brenner said. "There are people I know who would clearly qualify for a lumpectomy. Their reaction is, 'My breast is my enemy and I want it off.' No matter what you tell them about survival, they don't want their breast around anymore."

But other health advocates are convinced that the brochure can help more women make an informed choice. Canadian researcher Tim Whelan studies women with early breast cancer who were given educational materials designed to help them make a decision. Of those women, 94 percent chose lumpectomy, compared with 76 percent of women who did not have the so-called "decision aid."

Meanwhile, the percentage of women who have mastectomies is starting to shift, said Whelan, who directs the Supportive Cancer Care Research Unit at McMaster University in Hamilton, Ontario.

"Although there is variability, the overall [lumpectomy] rate is increasing, which implies women are starting to get this information," he said.

But the research also indicates that some are not, especially in rural areas. With the knowledge that some women need this information more than others do, NCI plans to put a special focus on distributing the brochure, said Johnson. The brochure can be ordered on the NCI Web site (www.nci.nih.gov) or by calling 800-4-CANCER (422-6237).

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Tinker Ready is a freelance health and science writer in Cambridge, Mass.

D.C. breast cancer activist and mastectomy patient Zora Brown says the new patient education brochure " is a document we can use."Connie Parks-Walczak of California was convinced by er doctor that breast-conserving surgery would be equally effective.The idea behind the brochure is to empower women from the outset.

D.C. breast cancer activist Zora Brown