Coping with the high risks of breast cancer

More women are seeking psychological help to overcome their fears.

By Rebecca A. Clay

Fears of breast cancer torment "A.," a 49-year-old business woman. She was 12 when her mother was diagnosed with the disease. Over the next five years, her mother underwent a radical mastectomy, radiation that burned and scarred her skin and chemotherapy so toxic it left her crouched on hands and knees, vomiting onto newspapers by her bed. Shattered by the illness, "A."'s mother forced her husband out of the bedroom and insisted that her daughter be her only caregiver. By the time her mother finally died, "A." had become her virtual slave.

Today "A." is divorced, childless and filled with rage at the disease that robbed her of a mother and a happy childhood. She's also a patient at a unique High Risk Clinic at the University of California, Los Angeles (UCLA). Designed to educate women about breast-cancer prevention and help them manage their emotions, the clinic is just one example of a burgeoning trend in interventions aimed at women worried about breast cancer.

Whether they have family histories of the disease or alarming genetic-testing results, an increasing number of women are seeking out psychologists who can help them overcome their fears. Psychologists are responding with specialized programs like the UCLA clinic and group-therapy interventions to help assuage the powerful emotions elicited by the disease.

Daughters at risk

Although known risk factors explain only 25 percent of breast-cancer cases, women who have such factors can become so paralyzed by fear they are unable to cope. At the UCLA clinic, for example, some patients are too terrified even to touch their own breasts during self-examinations. Almost all of the clinic's 450 patients have a mother or sister with breast cancer.

The result of that family heritage is often fear, denial, guilt, anger and grief. For most of the women, however, the biggest problem is an exaggerated sense of their own risk.

"Our goal is to close the gap between these women's own estimates of their risk of getting breast cancer and the 'real' risk provided by a genetic counselor," says clinic psychologist David K. Wellisch, PhD, a professor-in-residence in the psychiatry department at the UCLA School of Medicine. "Closing that gap requires quite a bit of psychological support and education about the disease."

Founded in 1993, the clinic uses a multidisciplinary approach to meet those needs. In addition to Wellisch, the treatment team includes an oncologist, genetics counselor, nurse practitioner, exercise specialist and a physician specializing in nutrition.

The team puts together an individualized intervention for each patient. A woman unable to perform self-examination would undergo a behavioral desensitization program with Wellisch and the nurse practitioner, for instance. An overweight patient would spend extra time with Wellisch and the nutrition-minded physician. A woman who was severely traumatized by a mother's death would begin an intensive course of psychotherapy.

The potentially life-long relationship the clinic builds with its patients offers opportunities for research as well as service. Wellisch recently piloted a six-week group intervention designed to help patients' manage their psychological symptoms, for example. Participants spent six hours learning the facts about breast cancer, then spent the remaining six hours in activities designed to promote sharing, resolve grief and build skills like stress management and relaxation. One activity was to write a letter to the sick or dead relative.

The intervention helped lower symptoms of anxiety and depression, says Wellisch. What it didn't do was alter women's risk perceptions or assuage deep-seated grief. That was a disappointment, says Wellisch, who speculates that the intervention was simply too short to affect these core emotions. The next step is to test the effectiveness of a longer version in a randomized, controlled study. The pilot study has been accepted for publication in the American Journal of Psychiatry.

A genetic legacy

Susan H. McDaniel, PhD, president of APA's Div. 43 (Family), is also fine-tuning an intervention aimed at women worried about breast cancer. In her case, the women have tested positive for the breast-cancer gene.

"The technology is so far ahead of the ethics and psychological understanding of genetic testing that we're running to catch up in these areas," says McDaniel, professor of psychiatry and family medicine at the University of Rochester School of Medicine in New York. "We're trying to figure out what it is patients want and need in this situation."

McDaniel's attempt to answer that question began when geneticists studying breast cancer at the university asked her if she could help women who had tested positive and seemed to feel abandoned by the researchers after learning their genetic status. McDaniel responded by creating a six-week psychoeducational group for nine women, six of whom had already had cancer.

For the first 15 minutes of every session, health-care professionals came in and answered the women's questions. The remaining 75 minutes of each session were spent with McDaniel, who led discussions on topics the women had identified as important to them during the initial meeting.

How family members would react was the women's most pressing concern, says McDaniel. Some spouses withdrew, for example. Children were upset about their own potential vulnerability.

"Most of these women had already looked their mortality in the eye," says McDaniel, who plans to keep offering the intervention. "Their worry about their children and other family members was more prominent than their fears for themselves."

APA Home Page . Search . Site Map