Every ache or pain scares Stephanie Holstlaw a little bit.
“I worry more these days than ever,” says Holstlaw, 47, who was first diagnosed with breast cancer in 1987. “I’m afraid to go back to the doctor. Maybe something has gone wrong.”
But Holstlaw doesn’t allow her fear to block a medical consultation or a chance to enroll in a groundbreaking drug trial. She has aggressively sought treatment for advanced breast cancer for more than 10 years. Worry is simply part of her life’s equation.
Holstlaw is far from alone in her anxiety, but she manages it better than some women. Once a woman has been diagnosed with breast cancer, worry of recurrence can be overwhelming. Even among women who have not been diagnosed, the possibility of it can become counterproductive: Some women avoid self-exams and mammograms for fear of what they might reveal. That fear has perhaps been exacerbated by advancements in genetic testing, misunderstandings about risk factors and the avalanche of statistics nowadays. Doctors wish women would land somewhere in the middle of two extremes: potentially dangerous complacency and undue alarm.
“The worry quotient among women is definitely higher than it needs to be,” says Judy Perotti, director of patient education for the Y-ME National Breast Cancer Organization, which is based in Chicago. “Just consider the overall numbers. There are about 180,000 new cases of breast cancer in the U.S. each year. About 45,000 women die from the disease annually. Estimates put American breast-cancer survivors at 1.6 to 2.6 million.”
Understanding the risk factors that can be controlled and those that can’t might help women deal with the worry. Two things a woman decides for herself are whether she pursues breast-cancer education and tries to ensure early detection of any problems.
But even getting information might not be as clearcut as it sounds, which is part of the frustration of dealing with the issue. With all the statistics floating around–some of them contradictory–a woman can go from well-informed to overwhelmed. Numbers or risks can be taken out of context.
Diana Rowden, chief executive officer of the Dallas-based Susan G. Komen Breast Cancer Foundation, tries to help dispel a myth about breast cancer: that one of every eight or nine American women is at risk.
The risk is one in eight over a lifetime, she said, meaning if you live beyond 85. At age 30, the adjusted risk is one in 2,525. At age 40, the risk is one in 217. At 50, it’s one in 50. At 60, it’s one in 24. At 70, it’s one in 14. At 85 is when the risk gets down to one in 8 or 9.
“Most women would be happy to face those odds by living to 85,” Rowden says.
Risk factors, too, are murky. For example, researchers deem 5 to 10 percent of cases to be hereditary. Scientists can offer only educated guesses about the remainder. That’s a heavy dose of speculation trickling down to doctors and patients.
Issues of heredity have become an even hotter topic as scientists learn more about testing for defective genes that might cause cancer. For women without disease, many questions remain unanswered about whether genetic tests might dictate any difference in screening or treatment.
“We might be able to tell them that a gene test puts them at higher risk but not provide a specific number or tell them when cancer might develop,” says Aimee Wonderlick, a genetics counselor at Northwestern Memorial Hospital.
Women routinely consider their risk from family members to be much higher than it is, adds Dr. Eugene Pergament, director of the reproductive genetics program at Northwestern Memorial.
Pergament said most patients need to learn more about genetic testing before submitting to any screening. He applauds testing labs that insist on genetic counseling for patients before blood is analyzed for defective genes. His program employs five counselors, including Wonderlick.
“There is a downside” to a woman learning she carries a defective gene, Pergament says. “It can be a time bomb for self-image and family dynamics. But maybe it never goes off.”
What’s more, a negative genetic test result doesn’t necessarily mean the patient is safe from breast cancer. She might fall into the much larger category of unexplained cases. Or researchers might develop more specific testing in the next few years that could show a defective gene in previously screened and cleared women. Some clinics already have sent out letters telling patients that new findings now allow for more detailed testing and that their past screenings may not have evaluated all potential flaws.
Amid all of these uncertainties, women should keep perspective, says Dr. Jeffrey M. Goldberg, a gynecologic cancer specialist at the University of Illinois at Chicago College of Medicine. He treats breast-cancer patients and conducts research about families at highest risk.
“Most women should be reassured that 90 percent of American women won’t ever get the disease,” he says, “and that other 10 percent tends to get it later in life.”
About three-quarters of new cases are among women over 50, according to American Cancer Society statistics. But Goldberg says women should still educate themselves about a disease that is the leading cause of death among 35- to 54-year-old U.S. women.
A particularly important point, one that allows individual control, is whether an older woman should go on hormone-replacement therapy. Research shows the common treatment for menopause puts women 55 and older at increased risk for breast cancer if used for at least five years; there is continuing research to determine a specific percentage of increased risk or whether new drugs can lessen the probability. On the other hand, hormone therapy can significantly reduce a postmenopausal woman’s chances of heart disease, which ultimately kills more American women each year than all cancers combined.
Clearly, decisions aren’t easy even if a woman puts risk factors and other considerations in context. But at least the woman has reassurance that she’s weighing the right issues.
An important source of control for a woman centers on early detection. That is the cornerstone of public awareness campaigns — and healthy worrying.
“We are intent on conducting early detection workshops,” Perotti says. “We hear all the time that women don’t want to perform self-exams. They don’t want to find out they have cancer.
“We confront this logic in every workshop. Our answer is simple: You have no control over how you get breast cancer, but you can take control with self-exams and mammograms (and any appropriate treatment).”
What’s more, researchers are exploring whether the stress of worrying might actually leave a woman’s immune system less than full strength for fending off cancer cells. An Ohio State University study published earlier this year showed women awaiting breast cancer surgery were likely to generate fewer white blood cells (which fight the body’s invaders) if they scored higher for anxiety during interviews and psychological tests.
Still, with all the stories circulating about women who were vigilant about breast health and yet later found out they had cancers that could have or should have been caught earlier, it’s easy to see why fear might spread. Holstlaw has her own head-shaking story.
In May 1987, her regular gynecologic exam turned up fibrocystic disease in her breasts. Her doctor assured her she was too young to develop cancer, that the irregular formation in her breasts shouldn’t cause concern.
“Breast cancer was just beginning to be a household name,” Holstlaw says. “I trusted him. He delivered my two children.”
By July, Holstlaw commenced worrying. She discovered a lump in one of her breasts during a self-exam. It was 3 centimeters and Stage 3 in development. She found another doctor, who guided her through a modified mastectomy, chemotherapy and radiation. She reached the hoped-for five-year cancer-free mark in 1993.
“Of course, if we had discovered the lump in May (of 1987), it would likely have been smaller and more treatable,” Holstlaw says. “If a doctor told me not to worry today, with all that is available to women about breast cancer, I clearly would do my own thing and not let him assure me nothing was wrong.”
Holstlaw, who from then on diligently educated herself, felt a little more prepared when her cancer recurred in 1994, six years after the original diagnosis. A bone-marrow transplant failed before she was able to benefit from genetic testing. It allowed her to take an experimental drug, Herceptin, that now is being rushed into distribution for women with advanced cases.
“It allowed me three years I don’t think I would have lived otherwise,” she says.
Her anxiety continues increasing as her daughters, now 22 and 24, have grown up. One daughter is in denial about any increased risk of breast cancer, mostly because a doctor once told her it is not hereditary. The other daughter is more willing to talk about it and consider healthy measures such as self-exams, mammograms (at the right age), regular exercise, a low-fat diet and possibly genetic testing.
The worries tax Holstlaw’s ability to stay strong when she needs it most–she recently found out that her cancer might be reappearing, that her body has possibly developed a resistance to Herceptin. The information frightens her, but she is happy to know it so she can prepare.
“I encourage women not to ignore their worries,” says Holstlaw. “Keep an open mind about early detection and any possible treatments. I’m a stronger and better person for it.”
