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Cancer's legacy

Haunted by their family history, women and men are opting for genetic testing. The results can bring new agony.

October 01, 2007|Shari Roan | Times Staff Writer

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 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. But families and individuals armed with genetic information may find they have replaced one problem -- not knowing -- with another: what to do about it.

For The Record
Los Angeles Times Tuesday, October 02, 2007 Home Edition Main News Part A Page 2 National Desk 1 inches; 48 words Type of Material: Correction
Genetics: An article on cancer risk in Monday's Health section referred in some places to the BRCA1 and BRCA2 genes as increasing the risk for some types of cancer. The genes themselves are not responsible; certain mutations of those genes are what increase the risk of the disease.
For The Record
Los Angeles Times Monday, October 08, 2007 Home Edition Health Part F Page 8 Features Desk 1 inches; 50 words Type of Material: Correction
Genetics: An article on cancer risk in the Oct. 1 Health section referred in some places to the BRCA1 and BRCA2 genes as increasing the risk for some types of cancer. The genes themselves are not responsible; it is a mutation of those genes that increases risk of the disease.

Lujan underwent genetic counseling and testing at St. Joseph Hospital Cancer Genetics Program in Orange, and the results confirmed her suspicions. She carried the BRCA1 gene, one of the two most prevalent genes linked to breast cancer (the other is BRCA2). That genetic mutation increased her lifetime risk of breast cancer from 13%, which is the average risk for any woman, to 85%. Her risk of ovarian cancer soared from less than 2% to 50%.

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

The family's battle may 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. Neither has Lujan's brother, who has a teenage daughter. (Men with the genes not only can pass them on, they also have a higher risk of prostate, breast and some other cancers.) 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."

Men with BRCA mutations can opt for earlier and more rigorous cancer screening. But women with genetic mutations for breast and ovarian cancer face particularly tough 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 and the author of a new book, "Ordinary Miracles: Learning From Breast Cancer Survivors." "The options include devastating operations. And there is some question and doubt about how much nonsurgical means decrease the risk. It takes a long time to counsel these women. I can't say, 'Gee, I have a real magical treatment here to help you prevent cancer.' "

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

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Early warning for cancer

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

But in an estimated 5% to 10% 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. Those mutations are BRCA1 and BRCA2 (BRCA stands for breast cancer). A couple of less-common mutations known to increase risk can also be identified.

Certain ethnic groups, such as people of Eastern European Jewish or Ashkenazi descent, have higher rates of BRCA mutations. If one parent carries the gene, there is a 50% chance that their offspring will inherit it.

"I think people should give themselves a chance to be assessed for their risk," says Dr. Pamela N. Munster, director of breast research at Moffitt Cancer Center in Tampa, Fla. "Ultimately, the patient decides what to do about prevention. But getting the risk assessment and being fully aware of the options is half the battle."

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% because, before menopause, the ovaries produce estrogen, which is linked to cancer risk.

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