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Health : Daughters at Risk : Experts Finally Focusing on the Unique Concerns of Women Whose Mothers Had Breast Cancer

October 18, 1988|ALLAN PARACHINI | Times Staff Writer

It has been more than 14 years since First Lady Betty Ford had breast cancer. But her daughter, Susan, vividly recalls that her mother left the White House on a Wednesday, unsure whether she had the disease. She had her right breast surgically removed two days later.

Susan Ford Vance then was 17, as conscious as any teen-ager of her own developing body, and scared to death.

"When they took her in for the biopsy," Vance said of her mother, "I didn't know if I was ever going to see her again."

Betty Ford underwent a modified radical mastectomy, a procedure whose effects her daughter first saw when her mother was dressing one day.

Discomfort, Anger

"I must admit when I first saw the scarring and everything, I stared and said, 'That's different looking,' " she recalled. "I was uncomfortable with it."

As her mother recovered, she felt comfortable venting with her daughter the normal anger that breast cancer patients have but which the First Lady would not permit her husband to see.

"She could express her anger to me," Vance said. "It wasn't at me. But I was someone she could let it out to. My mother and father are very close, but, you know, you never want to let the man in your life know that you're about to fall apart. She had more of a tendency to break down in front of me, as mothers will in front of a daughter."

As Vance now knows, daughters of women with breast cancer share other definite, complicated and sometimes frightening connections with their mothers' disease.

But unlike Vance--whose close and prominent family has learned much about the topic--hundreds of thousands of women whose mothers had breast cancer do not have the support services they may need to deal with their unique health concerns, experts say.

The number of breast cancer daughters remains unknown but is presumably enormous. About 135,000 new cases of breast cancer are discovered annually, and younger and younger women are contracting the disease.

Addressing Needs of Daughters

Some women are so terrified that they, like their mothers, might get cancer, they grow paranoid and fear to touch their own breasts--much less to allow anyone else, including their husbands, to do so, according to a new UCLA study of psychological ramifications of being a breast cancer daughter.

The combination of fear driven by ignorance and the legitimate--even urgent--need for such women to be vigilant about their health has prompted a more structured national movement to address the needs of breast cancer daughters.

Awareness of their risk has increased as medical geneticists have focused increased attention on inherited risk of cancer.

Though some experts contend the degree of heightened risk for daughters is up to nine times that of women in general, whether breast cancer is prone to being passed from one generation to the next remains the subject of some controversy.

Dr. Henry Lynch, a tumor specialist and geneticist who has devoted years of study to the issue at Creighton University School of Medicine in Omaha, said it may only be that more attention has been focused on breast cancer as compared with other cancers.

"It's affecting mothers, and it's such a sexually stereotyped lesion that it has received an enormous amount of attention," he said, noting that as early as AD 100, doctors in the Roman Empire had noticed patterns of breast cancer in families.

Passed by Both Parents

Lynch said his own work has concluded that genes linked to breast cancer may be passed not just from mother to daughter, but also from fathers with breast cancer in their families.

He said there are indications that other common cancers may share the same genetic passage ways and that ovarian cancer may be just as commonly passed from generation to generation as is breast cancer.

All families are not alike. Lynch said there are extreme variations in the incidence of breast cancer inheritance; in some families, daughters seldom get it; other families are afflicted by what amounts to genetic supersaturation.

Variations in the degree of extra risk are extreme, he said, depending on whether a woman's mother had the disease in one or both breasts and before or after menopause.

Highest Risk

Breast cancer before menopause--since it occurs while a woman's hormonal system is still active and can move cancer cells to other parts of the body--is universally acknowledged as far more dangerous than cancer after the change of life.

The highest risk category includes women whose mothers had cancer in both breasts, before menopause.

Some experts, including Dr. Marc Lippman, director of the Vincent Lombardi Cancer Research Center at Georgetown University Medical Center in Washington, believe that highest-risk daughters have as many as six chances in 10 that they, too, will get breast cancer.

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