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."