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Bitter inheritance

Breast cancer has crept its way through Lisa Lujan's life like an insidious, destructive weed. Her oldest sister was diagnosed at age 35 and again at 50.

Lisa Lujan, daughters Stephanie and Allison

Breast cancer has crept its way through Lisa Lujan's life like an insidious, destructive weed. Her oldest sister was diagnosed at age 35 and again at 50.

Her mother was diagnosed at age 72 and had a mastectomy.

Her second sister was diagnosed at age 44 and died in 2005 at age 48. Over the years, seven relatives on both her mother's and father's sides of the family have been stricken with breast cancer.

After her sister died, Lujan, 47, couldn't put it off any longer - the Santa Ana, Calif., woman had to know if she carried a gene that increased her risk of the disease.

Like Lujan, Americans haunted by a family history of breast, ovarian and prostate cancer are increasingly choosing to end the uncertainty over their personal risk. Last fiscal year, 70,000 people were tested for gene mutations linked to breast cancer - up from 20,000 in the previous year, says Myriad Genetics Inc., a Salt Lake City biopharmaceutical company that conducts the majority of breast cancer genetic testing in the United States.


Lujan underwent genetic counseling and testing, and the results confirmed her suspicions. She carried one of the two most prevalent genes linked to breast cancer.

A mutation of that gene increased her lifetime risk of breast cancer from 13 percent, which is the average risk for any woman, to 85 percent. Her risk of ovarian cancer soared from less than 2 percent to 50 percent.

In April, she had surgery to remove her ovaries - although they were still cancer free.

The family's battle might not be over. Although Lujan's eldest daughter, Stephanie, 21, has been tested and learned she doesn't carry the gene, her second child, Allison, 18, has not yet been tested. And Lujan herself will soon decide whether to have her breasts removed - a procedure called a prophylactic mastectomy.

"It's overwhelming," she says. "But I have a sense of urgency because of the age my sisters were diagnosed: 35, 44 and again at 50. I don't know if I'm going to make it past 50."

Women with genetic mutations for breast and ovarian cancer face particularly difficult choices on how to lower their risks. The options are limited, and yet each carries major repercussions.

"The prevention options aren't all that great," says Dr. S. David Nathanson, director of Breast Care Services at Henry Ford Health System in Detroit.

"The options include devastating operations. And there is some question and doubt about how much nonsurgical means decrease the risk."


With scientists discovering more genetic links to a host of cancers and other diseases, many Americans could face similar decisions. But the gene mutations in women present an exceptional dilemma, however, because they are common, result in high-mortality diseases and involve complicated decisions on prevention.

About 190,000 Americans are diagnosed with breast cancer each year. For the majority, the disease strikes unexpectedly.

But in an estimated 5 percent to 10 percent of cases, there is - or could be - an early warning in the form of an inherited genetic mutation that dramatically increases the chances of developing the disease.

Lisa Lujan expected her gene test to be positive and quickly decided to have her ovaries removed. The surgery dramatically lowers the likelihood of developing ovarian cancer, although it doesn't completely eliminate it. It also cuts breast cancer chances by as much as 50 percent.

The day before Lisa underwent a hysterectomy, Stephanie's gene test came back negative. A college student, the determined young woman already had begun planning surgery to remove her breasts during summer break although she had decided to keep her ovaries to preserve childbearing options.

Now, both Stephanie and her mother wonder about Allison. Also a college student, Allison says she isn't ready to deal with the issue. Furthermore, genetic testing isn't recommended before age 21 because of the emotional toll and because prevention treatments typically don't begin until 21 or later.

But her mother and sister are nervous. "My worry now is, 'Will I get lucky twice?' " Lujan says.

Doctors and genetic counselors point out that the key reason to have genetic testing is so that preventive measures can be taken. But the choices aren't great: Watch and wait, take drugs that might reduce risk but carry side effects or remove the ovaries or breasts before cancer has a chance to strike.


Many people struggle to come up with a satisfactory prevention plan after learning they carry the gene, experts say. According to research, 30 percent to 40 percent of women who test positive for the gene mutation do not follow the minimal recommendation to have a mammogram once a year.

More women, however, appear to be opting for the most drastic prevention measure - removing the ovaries and/or breasts.

After agonizing about her future over the summer, Lisa Lujan says she is fairly certain that she will undergo a prophylactic mastectomy soon.

"I saw what my sister went through and think 'I won't do that,' " she says. "I want to watch my family grow up and see my grandchildren."

Genetic tests for breast cancer more common

Without even trying, consumers soon might hear more about genetic tests for breast cancer.

After quietly offering the test for a decade, the primary supplier of the service, Myriad Genetics, has launched a direct-to-consumer advertising campaign. The test still requires a doctor's order, but the campaign is intended to urge people to talk to their doctors about their risk, the company said. Another company, DNA Direct, has been offering the test directly to consumers for several years, via a Web site. DNA Direct's test does not require a doctor's order, but the company encourages consumers to discuss the test with their doctors.


Some health professionals worry that people who aren't at high risk for breast or ovarian cancer will overreact to the advertisements and think they should get the test. The test isn't meant for the general population, only for families who have reason to suspect they are at high risk. It's also expensive and usually only covered by insurance if there is a family history of cancer.

Others worry that consumers ordering the test online or asking their doctors for a lab order will bypass a discussion with a doctor or genetic counselor about what the test entails and how to interpret the results.

Bitter inheritance By Shari Roan 20071015

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