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Sunday, February 26, 2012

Women to get breast density data on mammogram reports

There is debate over whether women with dense breast tissue are at increased risk for breast cancer.

In an effort to detect hidden breast cancers, Virginia is poised to become the third state to require radiologists to notify women if they have dense breast tissue.

This month, the Virginia House and Senate unanimously passed legislation requiring radiologists to put information about breast density in the federally mandated post-mammogram letters already sent to patients. Gov. Bob McDonnell will sign it, a spokeswoman said, calling it a "common-sense measure to ensure women's health."

Dense breast tissue makes it harder to detect cancers with a mammogram. But there is debate over whether women with dense tissue are at increased risk for breast cancer.

Furthermore, medical experts caution that the wave of breast density laws being proposed throughout the country may be premature and harmful, and could result in unnecessary — and expensive — tests.

The worry is what women will do with the knowledge that they have dense breasts.

"What we don't know is whether telling them that information gives them anything to act upon," said Dr. Barbara Monsees, chairwoman of the American College of Radiology Breast Imaging Commission. "Does it change what they can do or what they should do?"

Current scientific research doesn't answer those questions.

Monsees also voiced concern that the laws could undermine the confidence that women have in mammography if they are told that the test may not detect cancer.

"That would be a shame, because we know mammography saves lives," she said.

For those who have fought hard for the legislation in Virginia and elsewhere, the reason behind the laws is simple: Women have the right to be informed about their own health.

"I came at it from the perspective as well, trying to get patients to be their own best advocate," said Del. Bobby Orrock, R-Caroline County, who sponsored the bill in the House.

Already, Connecticut and Texas have passed similar laws, and 13 other states are considering legislation. A federal bill was introduced in the House last year.

An unpleasant surprise

Roanoke resident Joan Vannorsdall, 60, learned she has dense breast tissue in August when she was diagnosed with breast cancer.

Later, after requesting a decade of mammogram results from her medical file, Vannorsdall learned that radiologists had been noting her dense breast tissue as far back as 2003.

"That was really the stunner to me," she said.

It also made her wonder if her yearly mammograms had been as beneficial as she once thought.

"It made me think, maybe mammography wasn't the magic silver bullet," she said.

After all, every mammogram she had, including the one in August, had come back negative.

Vannorsdall's cancer was detected not by the annual screening, but by her gynecologist, who thought she felt something during a physical exam. It wasn't until an ultrasound was done that anything suspicious was found. A biopsy later revealed the cancer.

Vannorsdall began to research breast density and soon came across a Connecticut-based advocacy group, Are You Dense?, which has led a campaign to educate women about breast density. The group also is actively engaged in legislative efforts throughout the country and played a role in the Virginia bill.

Vannorsdall testified before the Senate Education and Health Committee in January.

"It is a matter of life and death to women," she said. "And this will save lives."

Medical experts, however, question that assertion.

"At the end of the day, the real question is, 'Will we save lives? Will we improve the treatment?'" said Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. "We don't have an answer. There has been no systematic study that has been done."

About half of women who have a mammogram have some degree of breast density, according to the American Cancer Society.

"I certainly agree that women need to understand both the benefits, risks and limitations of screening mammograms," Lichtenfeld said. "That is important. Quite honestly ... we have not done a very good job of doing that."

The society hasn't taken a position on breast density legislation, he said. "We continue to examine the evidence and follow the research closely surrounding this issue."

The role of law

The Virginia legislation does two things. First, it requires the radiologist to report breast density to the physician who ordered the mammogram. Second, if that report indicates that a woman does have dense breast tissue, then the patient must be informed in her post-mammogram letter.

As approved by the General Assembly, that letter will read: "Your mammogram demonstrates that you may have dense breast tissue, which can hide cancer or other abnormalities. A report of your mammography results, which contains information about your breast density, has been sent to your referring physician's office, and you should contact your physician if you have any questions or concerns about this report."

The medical community supports the requirement that radiologists report breast density to physicians, and Monsees said that has been part of the American College of Radiology's recommendations for years.

It is the wording of the letter to patients that caused a behind-the-scenes debate about the Virginia legislation. The Medical Society of Virginia and the Virginia chapter of the American College of Radiology both argued against the original wording, which would have suggested that additional screening tests might be warranted.

"If you indicate to a patient that there are other diagnostic tests that are better, it is misleading," said Ann Hughes, the lead lobbyist for the Medical Society of Virginia.

Other imaging tests, such as MRIs and ultrasounds, are used to detect some breast tumors in women at high risk for breast cancer, but they are imperfect, medical experts say.

They are also expensive and are generally not covered by insurance for routine screening.

"We felt like that was premature and many women might be harmed because it hasn't been scientifically studied," said Dr. Jennifer Harvey, a professor of radiology and director of breast imaging at the University of Virginia Health System who is part of the Virginia chapter of the American College of Radiology.

The concern is that if more women start having screening ultrasounds or MRIs, more biopsies of suspected tumors might be performed. But more biopsies also might come back negative, and the additional testing may not result in fewer deaths.

"There is the possibility of unintended consequences in women getting additional studies that may not lead to reducing deaths from breast cancer," Lichtenfeld said.

Vannorsdall said any opportunity to save a life and detect breast cancer should justify the tests.

While she said she was disappointed that the wording of the letter was "watered down," she was happy that the legislation will prompt the discussion between a woman and her doctor.

Harvey also said that she hopes the law will promote health education between doctor and patient.

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