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.
"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.
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.
But experts like Patricia Kelly, a genetic risk expert at Children's Hospital in San Francisco, believes that quoting odds and specific prevention advice can be a woefully inadequate way to try to deal with the complex psychological problems that breast cancer daughters can face.
"A woman will tend to feel that what happened to her mother is bound to happen to her," she said. "Intellectually, a woman may realize we no longer do (the most mutilating) radical mastectomies. And with early detection, we can now find the cancer at an early stage far more often than when her mother had it.
"But emotionally it's quite human to feel that if her mother died of it or suffered greatly, she will, too."
There are enormous variations in emotional response to the risk.
On the positive side, Susan Ford Vance (who married former Secret Service agent Charles Vance in 1979) says she has managed to remove any vestiges of paranoia from her own perception of her cancer risk.
In her case, her family's genetics indicate she has as much as four times the risk of getting the disease at some time in her life compared with a woman the same age with no breast cancer in her family; because her mother had experienced menopause before she had her cancer, Vance does not fall into the highest risk bracket.
Still, to minimize her risk, Vance, since her 18th birthday, has scheduled breast examinations with her family doctor every six months. She practices breast self-examination religiously.
In four years, when she turns 35, she also will begin to undergo annual mammograms--a schedule at least five years earlier than most doctors recommend for the average woman but as much as five years later than some specialists say may be appropriate for highest risk daughters of breast cancer patients.
Vance also knows her caution must be passed on to her own daughters, Tyne, now 8, and Heather, 5 1/2.
"They know their grandmother has had cancer and has lost a breast," Vance said, adding, "We've already started into the process" of heightening their health awareness.
But when it comes to confronting breast cancer, other daughters have not been nearly as relaxed or open, suggests a new study by David Wellisch, a UCLA psychologist, and Wendy Schain, a researcher at Memorial Medical Center of Long Beach and one-time National Institutes of Health consultant.
Their study involved 60 affluent whites from the Westside who were daughters of breast cancer patients and 60 women from the same background whose mothers had been free of the disease.
The groups were almost identical in demographics except that half of the cancer daughters reported their mothers were dead, compared to only about 18% of the control group. The cancer daughters reported slightly greater reliance on such practices as breast self-examination and were slightly less likely to smoke and drink.
Of the cancer daughters, 15% were young children when their mothers were diagnosed; 25% were adolescents. Wellisch said researchers expected that women who were very young when their mothers had cancer would report the greatest psychological problems. But adolescents turned out to be most severely affected.
In many respects, there were few differences between the two groups.
But some measures found serious, deep-seated problems that lingered years after daughters learned of their mothers' cancers.
Most notably, said Wellisch, those daughters showed lower than control scores in perceptions of their own body image and ability to be sexually aroused. They reported they had sex two to three times a month on average, while controls reported they averaged three to four times a month.
That observation, Wellisch said, led researchers to suspect that cancer daughters may be more hesitant to identify with their own sexual function and to find pleasure in their bodies for fear they eventually will be mutilated in cancer surgery.
Oblivious to Numbers
Wellisch said he also found the daughters to be oblivious to strictly numerical chances that they may get cancer.
"These women are very uninterested in those numbers," he said. "Relative risk doesn't matter to them. What's important is the personality style of the daughter."
Schain observed: "There is actual risk and there is perceived risk. Women respond to what they perceive as their index of vulnerability and susceptibility. You can have three daughters in the same family and you will have radically different behaviors.
"This is far more complex than one assumes."
Some women are so paralyzed with the cancer fear that they cannot even touch their own breasts, said Lippman and Ruth Dworsky, a USC cancer geneticist.
It is for these women that one of the most controversial of all practices in the study of breast cancer daughters may come into play.
Lippman and some other specialists believe there are some daughters whose fears are so extreme, so preoccupying and so unresponsive to psychiatric treatment that a preventive breast removal--a prophylactic mastectomy--may be justified.
"Perhaps (such a procedure) is an over-response . . . ," Lippman said. "But these are women who may have had multiple biopsies, and, basically, their entire lives are being enveloped by the worrying about their breasts and doing things about their breasts. I can define women who have a risk of breast cancer of 60% . . . for whom prophylactic surgery would be a reasonable decision."
But Dworsky, who is studying 213 daughters of 600 Los Angeles County women who had premenopausal cancer in both breasts, disagreed. She said that even for highest risk daughters, prophylactic surgery is difficult to justify.
"We feel there should be a much greater chance even these days of saving a woman's life without prophylactic surgery," Dworsky said, noting current techniques permit earlier discovery of breast cancer than even 10 years ago.
Dworsky--calling herself a "pie in the sky person"--Lippman and other experts said most cancer specialists also believe a breakthrough is imminent in genetic testing. It could lead to a test to identify a tumor site in a woman's breast before any cancerous tissues are present.
Meanwhile, health workers must be careful not to oversell detection techniques to women, Dworsky said, noting: "There are tumors with very rapid (development). Mammography is not absolute or faultless. A mammogram may miss the tumor.
"But I believe that in order to help people you have to emphasize the positive and show them a way to go. Creating fear without being able to do something about it only makes the situation worse. . . . We can cut the death rate in half, but we can't eliminate it."