Jane Lee Johnson thought her swelling waistline was just an unwelcome sign of menopause. But when the 49-year-old's abdominal pain grew so severe that she could scarcely breathe earlier this month, doctors at Falmouth Hospital told her that she had something far more frightening: A CT scan had detected a large tumor on her ovaries.
"I was really upset," said Johnson, who underwent surgery at a Rhode Island cancer center a few days later. "I always heard that, once ovarian cancer is detected, it must be serious, because it usually goes undetected. I thought it might be fatal."
But she did not have cancer at all. The large growth on her ovaries was benign, which could have been determined early if doctors had a reliable test for ovarian cancer. The growth needed to come out, but Cape Cod doctors could have removed it without all the anxiety.
Cancer specialists are proud that the United States is home to more cancer survivors than any other nation, 10.5 million people.
But there is a darker side to that success. For every cancer survivor, there are several "cancer scare survivors" such as Johnson, who have been told, based on imperfect tests, that they may have cancer when they do not.
False alarms are not only stressful, but they also often force patients to undergo uncomfortable follow-up tests or even surgery, only to discover that they are cancer-free. Doctors perform an estimated 2 million biopsies, in which a needle is inserted to extract a tissue sample, on healthy breasts in women and prostate glands in men each year because of suspicious test results.
In one study, more than 500 women with no symptoms of ovarian cancer underwent unnecessary abdominal surgery because a blood test wrongly suggested they had the disease.
Unfortunately, in a nation where "early detection" is a mantra and where new high-tech screening tests are being promoted for lung and breast cancer, despite high error rates, it is increasingly possible that everyone will experience a cancer scare.
A National Cancer Institute study released in June showed that within three years, nearly half the healthy men and women 55 and older who underwent regular screening for four leading cancers received at least one test result incorrectly suggesting they might have cancer, called a false positive. Women who diligently get annual mammograms face a 50 percent risk of a false-positive test result within a decade, another study found.
"I think that's just the risk of so many screenings, but the figures are pretty staggering," said Dr. Judy Garber, director of the cancer risk and prevention clinic at Dana-Farber Cancer Institute in Boston.
Tests intended to detect cancers early, before patients have symptoms, are made to be exquisitely sensitive, so as not to miss potential cancers. The result is that they wrongly indicate potential cancer of the breast, colon, cervix, and other organs 5 to 15 percent of the time, which translates into a cancer scare for at least 20 million Americans as a result of routine screening, according to a Dartmouth College researcher.
Even after symptoms appear, tests used to determine whether a patient has cancer are often inconclusive, leading to more invasive testing and aggressive treatment. The blood test for ovarian cancer misses early-stage cancers half the time, studies show, frequently causing doctors to suspect cancer even when results are normal, as in Johnson's case.
"In a serious disease like cancer, not doing the most aggressive thing is seen as taking a chance," said Dr. James Talcott, director of the center for outcomes research at the cancer center at Massachusetts General Hospital.
Talcott said patients should always be given a choice of whether to be tested for cancer, because a suspicious result is hard to ignore, even if it is wrong.
Public support for early detection of cancer remains strong, and annual mammograms have played a key role in reducing deaths from breast cancer.
But patient advocates have begun pushing for better tests, such as a proposed manogram that would more accurately detect prostate cancer. In the lab, researchers are working on more reliable tests for a variety of cancers, including ovarian, prostate, and colon.
Boosters of cancer screening have become more cautious about endorsing more tests until there is proof that they will do more good than harm. This month, the American College of Chest Physicians publicly opposed the use of CT, or computed tomography, scans to look for potential lung cancer in smokers, because studies have not demonstrated that they save lives and because the scans may lead to many false positives and subsequent lung biopsies.
However, critics of the cancer-screening system say that advocacy and professional groups exaggerate the life-saving value of early cancer detection while not emphasizing that cancer screening can hurt people.
Dr. H. Gilbert Welch, author of "Should I Be Tested for Cancer? Maybe Not and Here's Why," contends that, even with mammograms, many more women suffer cancer scares or unnecessary treatment for every life saved.
Based on federal cancer statistics, Welch estimates that annual mammograms would save the lives of 3 of every 1,000 women in their 60s over the course of 10 years. But, during that time, roughly 500 women would have at least one false-positive mammogram requiring additional testing, perhaps including a needle biopsy, only to find there was no cancer.
In addition, Welch estimates that six women would undergo treatments such as surgery and radiation for tumors that would never have threatened their health.
"We have oversold screening greatly," said Welch, a professor at Dartmouth Medical School in New Hampshire. "I suspect that most screening tests will help a few people, but . . .. they hurt a few people and make a whole lot of people uncomfortable."
Studies on how people react when they endure a cancer scare have had mixed results, with many women saying that the risk of a breast cancer false alarm is a worthwhile trade-off for the lives saved.
Dr. Julie Gralow, an oncology professor at the University of Washington in Seattle, said she took it in stride when she needed to get a biopsy to be certain that a suspicious mass found on her annual mammogram was not cancer. To be on the safe side, she underwent a magnetic resonance imaging, or MRI, scan that led to two more breast biopsies that also showed no sign of cancer.
Nonetheless, Gralow said that she doesn't regret all the biopsies and that she is glad to have the breast images for comparison with future mammograms.
"I think if we keep open lines of communication with our patients and realistically talk about the negatives of screening in addition to the positives, most women choose screening," Gralow wrote in an e-mail response to questions.
But reaction to false alarms varies by cancer, depending in large part on how unpleasant and risky the follow-up tests and treatments are. Men are particularly critical of the blood test for prostate cancer, the PSA or prostate specific antigen test, because it frequently detects very small, slow-growing cancers that are unlikely to affect a man's health. Nonetheless, doctors still often recommend surgery as a precaution, which can leave men impotent or incontinent.
"We're overtreating [prostate cancer] like crazy," said Talcott, pointing out that autopsy studies have shown that 60 percent of men who died in their 70s had at least some signs of prostate cancer, though very few ever got sick or died as a result of the disease.
"There is a vast ocean of potentially diagnosed, but clinically meaningless cancers," he said. "The more you stick the needle in, the more of those meaningless cancers you're going to find."
The blood test for ovarian cancer, which measures a protein called CA-125, is even less reliable than the prostate test, failing to pick up many early stage cancers, especially in younger women.
Johnson's oncologist, Dr. Richard Moore of Women and Infants' Hospital of Rhode Island in Providence, calls it "better than nothing, but not that much better than nothing."
He is developing a blood test that measures both CA-125 and another protein often found in women with the disease and that has proven much more accurate in human testing. But the test still needs approval by the US Food and Drug Administration before it can be used outside of research.
Johnson said she was shaken by the cancer scare, which required her to be away from home and her teenage son for a week so that she could be treated at a hospital where cancer specialists could be present. She is glad to be alive, she said, but added that "I can't even watch hospital shows."
Garber contends that cancer specialists need to remember stories like Johnson's, especially when considering adding new screenings.
For instance, she opposes the push by some oncologists to use MRIs for routine breast cancer screening for all women. Though the MRI is better at finding early-stage cancers, it also generates far more false positives. "It is sobering," said Garber. "We're not even evaluating the anxiety cost."
But the pressure to be aggressive in the war on cancer is powerful, both because the disease remains the nation's second leading killer and because doctors know they will be punished more for inaction than excessive action.
"The conservative thing to do is to be aggressive," said Michael E. Mone, a prominent Boston lawyer who specializes in medical malpractice lawsuits. "It is far more dangerous to say, 'That mole doesn't look bad to me,' and two years later, they've got melanoma. I've got those cases."
Scott Allen can be reached at firstname.lastname@example.org.