Should She Take Tamoxifen?

“When I saw her scar for the first time, it looked like a large block of skin, folded over. I would sometimes sit in her room while she got dressed, seeing her place the prosthetic in her bra. Other people would take me places, to school, to gymnastics, but not her. She couldn’t do it, she was too sick, especially after the chemo. Her hair fell out. I could hear her retching on the other side of the closed bathroom door, and it made me feel disgusted and revolted. I wanted to comfort her, but didn’t know how.”

--Anya Booker, on watching her mother die of breast cancer

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The specter of breast cancer haunts Anya Booker, a 33-year-old Hollywood filmmaker and screenwriter. It permeates her life, shades her most intimate memories of childhood and emerges as a frequent theme in her work.

She was only 14 when she lost her 45-year-old mother, Poppy, to the disease, and 24 when her older sister, Toy--by then, her surrogate mother and closest friend--died of breast cancer at 34.

“It felt like it was my mother all over again. I was grieving both deaths at the same time,” Booker says.

The death of her sister was not just about loss, as painful as that was, it also was about the disease--about fearing, with a growing sense of dread, for her own fate.

Follow the fragile thread of the women in her family: Her maternal grandmother was diagnosed with breast cancer soon after her mother died. She survives, but an aunt--one of her mother’s sisters--also contracted breast cancer and recently died. Although Toy was actually a half-sister--the child of her mother from an earlier marriage--a deadly line seemed to run unbroken through her mother’s side of the family. All proud African American women with a creative cultural heritage. All riddled with breast cancer. Would it reach her too?

Suddenly, she needed more than consolation. She needed some way to resist, to protect herself from the same killer, or at least a way to gain a sense of security about what might happen to her. She began keeping a journal, using a gift for words to chronicle the unthinkable.

Like Booker, thousands of American women who, because of family history or other risk factors, are at high danger of developing breast cancer are agonizing over whether to take tamoxifen. For nearly 20 years, tamoxifen has been an established treatment for breast cancer after surgery. But in October, the Food and Drug Administration approved the drug’s use by healthy women at high risk of getting it.

A trial had produced stunning results: the incidence of breast cancer among women taking tamoxifen was half that of a similar group taking a medically worthless placebo. But the risks were almost as compelling: birth defects, uterine cancer, blood clots.

Should she take it? For Booker, the decision goes beyond the medical implications of using a potent drug--with its own toxicity--before she actually becomes sick. It also provokes a flood of unresolved feelings and unfinished business that so often is the legacy of having loved ones die too soon.

It is about having dreams, and the possibility of not living long enough to fulfill them; about having the courage to make plans regardless of what might or might not happen tomorrow, about weighing the quality of life now against the promise of a future.

‘That’s Why I’ve Got to Write’

Booker’s best friend, Lisa Walker, has known her since their freshman year at UC Berkeley in 1984. She says Booker believes her mother and sister were cheated out of their dreams: Toy Cook was an aspiring actress and director, living in New York. Poppy Bontemps Booker, who taught third grade, had once hoped to bring arts to culturally deprived children and had wanted to author a children’s cookbook. But illness struck before they realized that time was short.

Booker, she says, does not intend to let that happen to her. “Sometimes Anya will say, with a real sense of passion: ‘That’s why I’ve got to do this, that’s why I’ve got to write.’ She equates being healthy and avoiding disease with living fully,” Walker says.

Booker believes her gift for writing was inspired by her grandfather. He was Arna Bontemps, a poet, novelist and writer of short stories during the Harlem Renaissance in the earlier part of the century, who counted himself among writer Langston Hughes’ closest friends.

Her grandfather conveyed his love for words to Booker’s mother.

“I’ve always had a very strong sense of literature and storytelling,” Booker says. “My mom was an avid reader, which she picked up from her father. She always loved language and words. She would always say to me: ‘Tell me a story,’ and that’s how we entertained each other.”

Drug Is Known Peril to Fetus

She thinks her drive to write gives her something to live for, a goal that will somehow insulate her from her medical history.

She also wants to have children. Tamoxifen is a known danger to a developing fetus.

On the other hand, she has rejected another option for high-risk women: preventive mastectomy. Her gynecologist uncle once suggested she consider the removal of otherwise healthy breasts with the hope of preempting the disease. A recent Mayo Clinic study showed that women at the highest risk of breast cancer can reduce their chances of developing the disease by 90% with the procedure, although researchers acknowledged that this would result in needless surgery for many women.

Her father, a retired family practice physician who lives in Alamo, Calif., is following her decision with both parental concern and medical dispatch. The combination is wrenching. “If she’d already had a baby, I’d probably be in favor of her taking the drug,” says Wade Booker, who charts cases of brain, uterine, pancreatic and lung cancer among his late wife’s immediate relatives.

“Something is going on, genetic or environmental,” Wade Booker says. “Anya’s scared of breast cancer, and I’m scared for her, but she shouldn’t be taking this drug if she wants children.”

To some extent, Anya Booker’s strong feelings about motherhood are wrapped into her own conflicted responses to watching her mother die and about having to grow up without her, and her own fears about not living long enough to raise a child. They emerge hauntingly in her scripts.

. . . You were more baby than adult when something called breast cancer claimed the first love of your life. You remember it consuming her before you mounted the courage to say goodbye. You recall the plastic that covered her body and her bed. You lulled through those days pretending to hope that this shield would protect her, but at night you prayed that death would release her misery. After all, this is the body you know like your own, she writes in “Threshold,” a script about a young woman’s fear of death.

For a time, after Toy’s death, she helped care for her sister’s young son, Tony, who is now a teenager living with his father. She recalls an incident in the weeks following Toy’s death when Tony lost his new baseball.

Furious, unable to find it, he collapsed in tears, howling: “I want my mommy.”

“My body knew how to make a rocking chair, and . . . we moved like my mother moved me when I was in pain,” Booker writes in a journal she is keeping for a future memoir.

“While I cradled him in the breasts I’d been afraid to lose, his tears mixed with my own; our wailing turned to whimpers. The words I begged in my throat to release got stuck in the place where I held 10 years of grief.”

As she weighs the tamoxifen decision, she recognizes her deep-seated mistrust of all drugs--even while acknowledging their benefits. She remembers the vivid images of her mother’s response to chemotherapy, her horror and helplessness. “I felt like the drugs killed her even more than the cancer. My intellect knows they are different drugs but my emotions don’t.”

Then, too, Booker wonders if she is too young to start taking tamoxifen. The drug is not recommended for use longer than five years. Little benefit occurs after that time, and experts believe it also could be harmful.

So Booker wouldn’t even be 40 by the time she would have to stop taking the drug. If she hasn’t developed breast cancer by then, being 40 would raise her risk even more. Risk increases with age. “Tamoxifen may keep me from getting breast cancer before I’m 40, but I don’t have any idea what it could do to me when I’m in my 50s.”

Still, the family history is with her, always. The dilemma continues.

A Disease Most Feared by Women

Most women overestimate their risk of breast cancer.

Heart disease kills more women than anything else: more than 500,000 women annually, nearly double the number of women killed by all cancers. And lung cancer is the leading cancer killer of women.

But breast cancer is the disease women fear the most. It is tied up in feelings of femininity, sexuality and body image, of nurturing children and of a woman’s sense of self--of who she is and who she was.

The approval of tamoxifen for breast cancer prevention has proved a mixed blessing for many women at higher risk, forcing them to weigh the side effects of the drugs against the potential of developing breast cancer. In a sense, the decision becomes easier for older, post-menopausal women: The danger for them increases with age, and, for many, their child-bearing days are over.

Most women as young as Anya Booker rarely worry about breast cancer. Many have never even had their first mammogram. At age 35, only about 50 women in every 100,000 develop breast cancer; at 60, it jumps to 300, and by age 70, it is 400. Overall, women have a 1 in 9 chance of developing breast cancer up to the age of 85. After 85, the odds become 1 in 8.

But, although rare, breast cancer does strike young women. And when it does, it can be more aggressive and deadly than in older women. In part, this is because breast tumors are driven by hormones that young women still produce.

Among blacks, the statistics are even grimmer. Black women under age 50 are more likely than younger white women to develop breast cancer.

And black women are more likely to die of it, regardless of their age. The death rate for African American women from breast cancer is higher than that of any other racial or ethnic group; it is 20% higher than that of white women.

Booker is only a year younger than her sister was at death.

Yet, in a way, she is fortunate: The double tragedies of her mother and sister have alerted her, making her vigilant.

She remains nervous but clearly feels more in control today than she was in 1991, after she lost her sister.

Toy’s death “was paralyzing to me,” she says. “I became completely terrified that I was going to be next. I couldn’t handle it; I dealt with it by eating. I gained weight.

“I put everything on hold, living day to day, unwilling to think about my future. I was still engaged socially to a degree, but I felt that my time was short. I dealt with things either with a sense of urgency--or complete passivity.”

Program Helps Put Risk in Perspective

But in 1995, she heard about a program that seemed meant for her: the Revlon/UCLA Breast Center at UCLA’s Jonsson Cancer Center, which offers a special program for women at high risk of breast cancer. She enrolled immediately.

The program offers a multidisciplinary approach to evaluating the degree of risk and helping women take steps to reduce it.

It helped her put her risk in perspective and enabled her to feel less alone.

It also made her understand that she need not feel pressured to do anything extreme.

Making these decisions “is like a lot of things we face in life--not a black or white story,” says Dr. Patricia Ganz, director of the UCLA high-risk program. “I tell patients that don’t have to make a decision today about what actions to take.”

Women “need to be well informed--and be re-informed; they have to realize this is a dialogue and that it is not fixed in time,” Ganz says. “New information always becomes available.”

Walker, Booker’s friend, says the program “has really calmed her down. She wants to believe that ‘this is not going to happen to me,’ and they have reflected that back to her, [by saying]: ‘We’ll monitor you carefully, and if something does happen, we will handle it immediately.’ ”

The program provides routine screening and clinical exams, as well as the services of an oncologist, a nurse practitioner, geneticist, psychologist, nutritionist, even a physical fitness trainer.

Women are encouraged to make lifestyle changes, in diet and exercise, for example, and there are support groups for high-risk women who want to share their anxieties with one another.

Booker, who ruefully admits she still needs to lose weight, spent six weeks in the support group, saying it helped her learn that her reactions to the deaths of her mother and sister from breast cancer were not unusual.

“Hearing other women’s fears let me know that my feelings were valid,” she says. “I gained tremendous reassurance in dealing with my grief.”

Deciding Against Genetic Testing

The subject of taking tamoxifen has never been raised by Anya Booker’s physicians, largely because it hasn’t been studied as a preventive agent in women younger than 35. “No doctor has ever suggested I take it,” she says.

But medical decision-making is never simple. The National Cancer Institute computer model that most doctors use to assess risk does not take genetics into account, nor the ages at which close relatives contract the disease. In Booker’s case, the young age at which her mother and sister became ill and died would heighten her risk. Booker believes something genetic explains her family history of breast cancer. But an analysis of the effect of tamoxifen on women who carry breast cancer gene alterations BRCA1 and BRCA2 are not expected until later this year. In the meantime, she has decided against the kind of genetic testing that would settle her suspicions--and inform her decisions.

“What would I do with that information?” she says. “I’d still be nowhere close to being free of worry.”

Her father agrees. “What the hell good would it do? She could lose her health insurance. Also, I would hate for her to be walking around with that knowledge in her head, with that time bomb. I just have to believe as long as she gets regular checkups and mammograms, it will be caught in time.”

But UCLA’s Ganz thinks that after the results are released, Booker may want to reconsider genetic testing and reassess her situation.

In the meantime, Ganz has tried to help Booker look at her risk realistically.

“Let’s just say, for sake of argument, her mother carried the gene. There is only a 50% chance Anya has inherited the gene. And only 50% of those carriers get breast cancer. So if she has the gene, her lifetime risk, even with a family history, is only 25%.”

This makes her risk two to three times that of the average woman; still, Booker finds the numbers comforting. They sound “not as bad as I thought it was,” she says.

Maybe it is the comfort of the numbers. Maybe it is her desire to have children. Maybe it is the urge to avenge her mother’s death, and her sister’s, by living every day to the fullest. Maybe it is the knowledge that she is being carefully monitored by the guardians at UCLA. Maybe it is all these things. But Booker has decided not to take the drug, for now.

“I want to have children and continue my creative life,” she says. “Taking tamoxifen will not guarantee that I will do that and may ruin things in ways that no one can fully anticipate yet. I may feel differently about the drug years from now, and they may know more about its effect on women years from now.”

A new trial is about to get underway that will compare tamoxifen to another drug, raloxifene, to find out which is more effective in reducing breast cancer risk.

So there is even more incentive to be patient. Booker waits. And she writes.

“I’ve realized that what is truly important to me is the quality of my life, no matter how long I’m here,” she says. “It is relevant to my spiritual belief, as well, that I live every day as fully and passionately as I can. I feel that is more of what I can do for myself than any of those other things we hear about, including drugs. I’m here in this moment: What do I want to make of it?”

Walker says that Booker never spoke of her grief at the loss of her mother and sister during the early years of their friendship. Now she has begun to talk and write about it.

“I had the sense that she was going through these experiences, and dealing with them, but not feeling them,” Walker says. “Now, I think, she has gotten to a point in her life where she has no choice but to feel them.

“Sometimes, her writing is painful. It hurts. But she has less fear as a result. When she writes, she expresses what is her. And she is connected to her mother, her sister--and herself.”

When your mother is gone, tears are never enough, Booker writes in “Threshold.” They’re no more expressive than a smile at dusk. Surely glory deserves more.

When your mother is gone, you try to trade your life for hers by fearing death and failing to live the life she labored to bring into being.

When your mother is gone, one day you see her in the mirror, looking back at you and declaring that she loves you, you even love you, and neither of you came to the world to dwell on the pain of the past.

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

3 Generations Struggle With Cancer

The family tree illustrates the impact of cancer on the Booker family, beginning with Anya Booker’s grandparents, Arna and Alberta. Black squares indicate cancer deaths:

Source: Anya Booker

compiled by TRICIA FORD / Los Angeles Times