Centers offer guidance for women at high risk of breast cancer
October 28, 1999
Web posted at: 6:11 PM EDT (2211 GMT)
By Rachele Kanigel
As a teenager, Donna Hatfield watched first her grandmother and then her mother battle breast cancer. When she hit her 30s and her twice-yearly mammograms revealed a number of suspicious lumps, the Kansas woman suspected she, too, carried the family curse. But until recently, there really wasn't much she could do other than worry and wait.
Then, last year, Hatfield discovered the Breast Cancer Prevention Program at the University of Kansas Cancer Center in Kansas City, Kansas, located 20 minutes from her home. There, the 44-year-old telephone company manager was able to sit down with a team of breast cancer experts who could review her personal and family health history and explain her options. Through the program, she also underwent genetic testing to see if she had a mutation that would make her especially vulnerable to breast cancer.
The news wasn't good. Hatfield learned she does, indeed, carry the errant gene, and her risk of developing breast cancer is extremely high -- about five times that of the average woman.
But while the new information confirmed Hatfield's worst fears, it also empowered her -- she feels she knows her enemy and can take extra precautions.
"I won't say it doesn't add a huge burden," says Hatfield, who has a 21-year-old son and an 18-year-old daughter. "It does. But ... at least I know now what I'm dealing with."
Catering to a need
Over the past few years, dozens of cancer centers and hospitals around the country have established breast cancer risk-assessment clinics to help sort out the complex medical and psychological issues high-risk women like Hatfield face.
"They're popping up all over," says Dr. David Euhus, co-director of the Mary L. Brown Genetics and Risk Assessment Center at the University of Texas Southwestern Medical Center in Dallas.
What's fueled this proliferation of programs, Euhus says, are a raft of recent advances in genetics and molecular biology that have revolutionized the understanding of the disease. First came the cloning in the mid-1990s of two genes, BRCA 1 and BRCA 2, associated with breast cancer; next came the development of tests to detect cancer-causing mutations in these genes. Since then, scientists have discovered new ways to prevent and diagnose breast cancer early.
"There's enough information that you can really counsel somebody about their risk," says Euhus, who has developed a sophisticated computer program for assessing breast cancer risk. "And now there's something to do about it."
The research connection
Most programs offer access to genetic testing and cutting-edge detection and prevention strategies.
At the Dallas clinic, for example, eligible patients can have their milkduct fluid tested for signs of precancerous changes, Euhus says. Patients can also enroll in studies of several medications that may help prevent the development of cancer. At a new high-risk clinic opening this month at the University of California, San Francisco, women who go through risk-assessment counseling can choose from a number of "boutique services" including nutritional counseling, stress-management training and personalized instruction in breast self-examination.
"It's all part of a trend in medicine toward education and prevention," says Dr. Leah Millheiser, coordinator of the San Francisco program.
Though some health insurers still balk at covering such services, many are beginning to see that prevention can cut costs in the long run. And some clinics are able to use grant and research money to keep their services affordable. Genetic testing can run upward of $2,400, but some research studies will cover the cost.
Euhus notes that research is a major component of many risk-assessment clinics, which aim to "reduce the incidence of breast cancer in the United States and the world."
"There's a great deal of research going into who truly is at risk, what's going wrong with the breast cells, and what we can do to intervene," Millheiser says. "The plan is to prevent cancer before it starts."
More than just medicine
High-risk clinics typically are staffed by a multidisciplinary team that might include a genetic counselor, a social worker, a psychologist, a health educator, a surgical oncologist, a gynecologist and a molecular biologist. Having such a team of experts can be vitally important for women who have to make gut-wrenching health care decisions.
Hatfield, for example, is considering surgery to have her ovaries or her breasts removed -- radical steps that could significantly reduce her risk of developing breast cancer.
"Sometimes I think the easy decision would be to have the two surgeries and get on with my life," she says. "But I'm not ready to make those choices yet."
Copyright 1999 WebMD, Inc. All rights reserved.
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