NBC News

The chatroom posts always start with words like "Help!” or “I’m flipping out”. And they’re all the same story -- a woman having a routine mammogram is called to come back for follow-up. She’s not told why, and the wait can be as long as six months.

A study published on Monday shows many women suffer intense stress after such a call -- and  that the stress lasts long after a follow-up mammogram, ultrasound or biopsy shows they are cancer-free.

Most women are just fine, of course. But the study, published in the Annals of Family Medicine, suggests that doctors need to address the possibility of anxiety, even extreme anxiety, over a false-positive test result.

“False-positive findings on screening mammography causes long-term psychosocial harm: Three years after a false-positive finding, women experience psycho-social consequences that range between those experienced by women with a normal mammogram and those with a diagnosis of breast cancer,” John Brodersen and Volkert Dirk Siersma of the University of Copenhagen concluded in their report.

A 42-year-old woman wrote about her experience in one women’s health chatroom. “LADIES-HELP I’m flipping out,” she writes. “I am scared out of my mind. I have dry heaves because there’s nothing to vomit.”

The woman, whose identity could not be confirmed, got a letter asking for a follow-up visit to get additional imaging after a routine mammogram. “I called to make the appt & it's going to be A WEEK before they can fit me in!” she writes. “I am waiting for a call back from my Dr. to see if I can get any more info. I am SO SCARED!!!!!!!”

Talya Salz, who’s done some research on the anxiety that follows mammograms, says it’s not hard to imagine what women are going through. “At least in the initial period, you are going through the motions of imagining what it would be to have breast cancer,” Salz,  who studies cancer survivors at Memorial Sloan-Kettering Cancer Center in New York, told NBC News.

Salz and colleagues did their own study of the psychological impact of having a false-positive mammogram in 2010. Their meta-analysis -- a study of studies -- showed that women who got a false positive were more likely to be anxious and distressed about breast cancer. Other studies have shown a similar effect. The latest study followed 454 women for three years.

“The risk of having false positives differs greatly from one country to another. The cumulative risk in Europe and the United States of false positives in 10 screening rounds ranges from 20 percent to 60 percent,” Broderson and colleagues wrote.

They compared women who had an abnormal mammogram that turned out to be nothing to women who did have breast cancer.

“Women with breast cancer experienced greater negative changes in psychosocial consequences than women with false positives, who again experienced greater negative changes than women with normal findings,” the researchers wrote. “In the two scales regarding inner calm and existential values, however, there was no statistically significant difference between women with false positives and those with breast cancer up to six months’ follow-up.”

Breast imaging specialist  Dr. Alice Rim of the Cleveland Clinic in Ohio says this means doctors need to do a better job right after women get their mammograms.

“One of the most important things that I can do as a physician in a screening program is make sure the doctors have a talk with their patients,” said Rim, who was not involved with the latest study. “What does it mean when they call you back? It could be nothing.”

What looks like a tumor on an X-ray may be a cyst, or it maybe nothing at all. Sometimes growths just disappear, for reasons doctors don't quite understand. "You have to take a 3-dimensional object -- a breast -- and smash it onto a two-dimensional view," Rim said.

Rim says her clinic is careful about sending letters to women saying they need a follow-up mammogram. “Getting the letter is very scary,” she said. “Sometimes women don’t know what to do. They are freaking out.” Rim said often her clinic will call a patient before she gets the letter to explain what it means -- and what it doesn’t mean.

”We try to hold off on sending letters on a Friday or Saturday because there is no one to call,” Rim said.

This anxiety is of one of several reasons the U.S. Preventive Services Task Force recommends that women over 50 only get a mammogram every other year, and why the group says it might not be necessary for every woman aged 40 to 50 get a mammogram.

“We don’t think about the negative results of all the testing that we do until we get a scary result,” Salz said. But Salz and Rim agree -- this doesn’t mean women should not get mammograms, which can find breast cancer before it has spread and while it is easiest to treat.

While women may be anxious, Salz says, it doesn’t usually reach the point of damaging their lives. “We are not talking about anxiety that is going to send you to get medication,” she said.

But anxiety may deter women from coming back for their next routine screening -- and that’s not good, Salz said.

Cutting back to screening every other year can cut back the anxiety, too, a study funded by the National Cancer Institute earlier this year found. It found that over 10 years, 61 percent of women who have annual mammograms will get called back for what turns out to be a false positive, compared to 42 percent of women getting the screening tests every other year.

And another study published Monday confirms that women can safely skip every other year.

The team from the University of California San Francisco and Seattle’s Group Health Research Institute looked at data from more than 900,000 women. They found that women aged 50 to 74 who got screened every other year were no more likely to have advanced stage cancer or big tumors than women screened more frequently -- even if they had so-called dense breasts, which are harder to read on an X-ray.

“For women 50 to 74 years old with dense breasts who are cancer-free, we estimated that more than half will be recalled for additional mammography at least once over the course of 10 years of annual screening,” said Rebecca Hubbard of Group Health Research Institute, who worked on the study.

“Screening every other year decreases this risk by about a third. The risk of false-positive results is even higher for women who begin annual screening at age 40.”

But the study also found that for women 40 to 49 who had extremely dense breasts, if they only got screened every other year they were almost twice as likely to have advanced stage cancer if a tumor was later found, and more than twice as likely to have a large tumor.

Women under 50 with dense breasts need to decide with their doctors whether to have annual mammograms, they wrote in the Journal of the American Medical Association’s JAMA Internal Medicine. But they should also “be informed that annual screening leads to a high cumulative probability of a false-positive mammography result because of the additional screening examinations.”

As for the 42-year-old woman who was so anxious she vomited?

"I had a biopsy done last week. The nurse called me with my results this morning...& they were benign!" she wrote. "I am very relieved! This has been the longest week of my life."

By Julie Steenhuysen and Steve Orlofsky
Reuters

As many as a third of cancers detected through routine mammograms may not be life threatening, according to a study published on Wednesday that raises fresh questions about the benefits of breast cancer screening.

The study, which looked at three decades of U.S. government data, found more than 1 million women may have been over diagnosed for breast cancer, needlessly exposing them to the anguish of a breast cancer diagnosis and the ordeal of treatment.

"It's a lot of women. It's a very substantial harm," said Dr. Gilbert Welch of The Dartmouth Institute for Health Policy & Clinical Practice in New Hampshire.

But proponents of mammograms have already begun poking holes in the study, by Welch and Dr. Archie Bleyer of St. Charles Health System in Oregon and published in the New England Journal of Medicine. While mammograms are not perfect, the proponents say, their benefits still outweigh the risks.

Welch has made overdiagnosis a major focus of his research. In an earlier study, he concluded that as many as 1 million U.S. men had been over diagnosed with prostate cancer since the introduction in 1986 of the widely used PSA test.

Such studies contradict the deeply ingrained belief that cancer screening is always good because it saves lives, an idea that is being steadily challenged by studies examining the harms of screening.

"We're not the first to suggest this, and it has come at a very huge human cost - the cost of telling a large number of women they have cancer and treating women for cancer with chemotherapy and radiation and surgery," Welch said in a telephone interview.

In 2009, the U.S. Preventive Services Task Force, a government-backed advisory panel, issued new guidelines that suggested women should start routine mammograms at age 50 rather than 40, in part because the tests have such high false positive rates and the benefits in lives saved did not outweigh the worry and anguish caused by the false positive results.

That conclusion, which was based on a review of published studies, contradicted years of messages about the need for routine breast cancer screening starting at age 40 and triggered a backlash from cancer doctors, advocacy groups and lawmakers who said the tests save lives and are worth the risk of a false positive test result every now and then.

An independent panel of advisers in Britain that reviewed data from 11 studies backed up critics of the task force, saying that for every 10,000 50-year-old women invited to have a mammogram over the next 20 years, screening would prevent 43 deaths and result in 129 cases of over diagnosed breast cancers, preventing one breast cancer death for every three over diagnosed cases.

The matter, however, is still far from settled.

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society, said the new study was an "interesting conversation starter" but not the final say about the value of mammography in the early detection of breast cancer.

"It points out issues that many if not all experts agree on, but the degree of the number of women have been impacted and the true impact of the negative side of mammography is something that other researchers would disagree with," he said.

In the latest study, Welch and Bleyer looked to see how well mammography was working as a screening tool.

They figured that to reduce the rate of death from cancer, screening needs to not only find more early-stage cancers; it must also reduce the number of cancers that are discovered at a late stage, when treatments are less likely to work.

Using government health and census data, the team compared breast cancer diagnosis between 1976-1978, before mammogram screening was widely used, with data in 2006-2008, when routine mammograms had become well established.

They found that the introduction of screening mammography in the United States has doubled the number of cases of early-stage breast cancer detected each year, but the rate at which women are diagnosed with late-stage cancer has only fallen by 8 percent.

"You see with mammography a dramatic increase in early-stage disease, but you don't see much compensatory decrease in late-stage disease. That means you are finding a whole lot of early cancers that were never destined to become late-stage," Welch said.

Welch said that mammogram screening is likely not doing much to catch cancers at an even earlier stage of the disease, when they are more treatable.

The researchers estimated that breast cancer was over diagnosed in 1.3 million U.S. women in the past 30 years. In 2008 alone, they estimated that breast cancer was over diagnosed in more than 70,000 women, accounting for 31 percent of all breast cancers diagnosed.

Welch said the findings cannot answer the question of whether women should get screened for breast cancer, nor does it suggest that there are no benefits, but the findings do challenge the assumption that mammograms are always a good idea.

"I can't discount that there may be a tiny fraction of women who are helped by screening, but we can say it is very small - much smaller than conventional wisdom," he said.

Others were quick to dismiss the findings, saying the study by Welch and Bleyer was fundamentally flawed because it underestimates the annual rate of breast cancer growth.

Dr. Debra Monticciolo, a spokeswoman for the American College of Radiology and president of Society of Breast Imaging, said the paper was an "extensive analysis based on false assumptions."

For their analysis, the researchers assumed in their "best guess" estimate that breast cancer rates would remain fairly stable over the study period, increasing at a rate of about a quarter of a percent a year.

"They are off by a factor of 4," said Monticciolo, who said the real figure is closer to 1 percent increase per year.

"If you recognize breast cancer had been increasing for 1 percent per year, there is no overdiagnosis."

Welch dismissed the criticism as a "circling of the wagons" by a specialty group that is "simply not open" to consider that there might be any problems with mammography.

"It's is a lot easier to make a simple (and misleading) case for screening, than it is to try to do better. But it is not in the best interest of our patients," he said.

Dr. Colin Begg of Memorial Sloan-Kettering Cancer Center of New York said he thinks the study makes a pretty good case for overdiagnosis, but he questions the authors' assertion that the benefits of mammography are small.

"We have had umpteen randomized trials out there that show there is a mortality benefit of about 15 percent," he said.\

Begg said the authors are concerned that women are being encouraged to get mammograms when it may not be in their best interest, but he said all screening tests have risks as well as benefits.

Breast cancer is the second-leading cause of cancer death in women, exceeded only by lung cancer, according to the American Cancer Society.

"I'm assuming most women who get mammograms are vastly more concerned about preventing their death from breast cancer than they are about the false positives of mammography," he said.

Breast cancer screening for women over 50 saves lives, an independent panel in Britain has concluded, confirming findings in U.S. and other studies.

But that screening comes with a cost: The review found that for every life saved, roughly three other women were overdiagnosed, meaning they were unnecessarily treated for a cancer that would never have threatened their lives.

The expert panel was commissioned by Cancer Research U.K. and Britain's department of health and analyzed evidence from 11 trials in Canada, Sweden, the U.K. and the U.S.

In Britain, mammograms are usually offered to women aged 50 to 70 every three years as part of the state-funded breast cancer screening program.

Scientists said the British program saves about 1,300 women every year from dying of breast cancer while about 4,000 women are overdiagnosed. By that term, experts mean women treated for cancers that grow too slowly to ever put their lives at risk. This is different from another screening problem: false alarms, which occur when suspicious mammograms lead to biopsies and follow-up tests to rule out cancers that were not present. The study did not look at the false alarm rate.

"It's clear that screening saves lives," said Harpal Kumar, chief executive of Cancer Research U.K. "But some cancers will be treated that would never have caused any harm and unfortunately, we can't yet tell which cancers are harmful and which are not."

Each year, more than 300,000 women aged 50 to 52 are offered a mammogram through the British program. During the next 20 years of screening every three years, 1 percent of them will get unnecessary treatment such as chemotherapy, surgery or radiation for a breast cancer that wouldn't ever be dangerous. The review was published online Tuesday in the Lancet journal.

Some critics said the review was a step in the right direction.

"Cancer charities and public health authorities have been misleading women for the past two decades by giving too rosy a picture of the benefits," said Karsten Jorgensen, a researcher at the Nordic Cochrane Centre in Copenhagen who has previously published papers on overdiagnosis.

"It's important they have at least acknowledged screening causes substantial harms," he said, adding that countries should now re-evaluate their own breast cancer programs.

In the U.S., a government-appointed task force of experts recommends women at average risk of cancer get mammograms every two years starting at age 50. But the American Cancer Society and other groups advise women to get annual mammograms starting at age 40.

In recent years, the British breast screening program has been slammed for focusing on the benefits of mammograms and downplaying the risks.

Maggie Wilcox, a breast cancer survivor and member of the expert panel, said the current information on mammograms given to British women was inadequate.

"I went into (screening) blindly without knowing about the possibility of overdiagnosis," said Wilcox, 70, who had a mastectomy several years ago. "I just thought, 'it's good for you, so you do it.'"

Knowing what she knows now about the problem of overtreatment, Wilcox says she still would have chosen to get screened. "But I would have wanted to know enough to make an informed choice for myself."

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