In a move that has irked medical groups and delighted patient advocates, states have begun passing laws requiring clinics that perform mammograms to tell patients whether they have something that many women have never even heard of: dense breast tissue.
Christopher Capozziello for The New York Times
Nancy M. Cappello of Woodbury, Conn., learned in 2004 that she had advanced breast cancer.
Thomas Kolb, M.D.
Left, a scan of a dense breast, which has more glandular or connective tissue than a non-dense breast, right. The denser tissue, with more milk ducts and lobes, can block X-rays.
Women who have dense tissue must, under those laws, also be told that it can hide tumors on a mammogram, that it may increase the risk of breast cancer and that they should ask their doctors if they need additional screening tests, like ultrasound or M.R.I. scans.
The issue is pitting angry patients against the medical establishment. Advocates say women have a right to know, but medical groups argue that the significance of tissue density is uncertain and that reporting it may panic women and lead to an avalanche of needless screening tests and biopsies.
Laws requiring disclosure have been passed in Connecticut, Texas and Virginia, and most recently in California and New York, where they will take effect next year. A bill calling for a federal law has been introduced in the House.
The laws owe their existence mostly to Nancy M. Cappello, 59, of Woodbury, Conn. She was not told that she had dense breast tissue until after doctors found an advanced cancer that mammograms had missed. She took her story to legislators, and in 2009, Connecticut became the first state to require that women be told if they have dense breasts and that insurance companies cover ultrasound scans for those women.
"I want to help other women," said Ms. Cappello, formerly the state's chief of special education. "I can't help myself. My cancer should have been detected at a much earlier stage."
"Dense" breasts have a relatively high proportion of glandular or connective tissue, which blocks X-rays. Non-dense breasts have more fat, which X-rays penetrate easily. Over all, about 40 percent of women who have mammograms have dense breast tissue. It is not abnormal, just one of nature's variations. Younger women are more likely to have dense tissue, but as many as 25 percent of older women do, too. Density cannot be judged by touch; it shows up only on mammograms.
For many women, the legislation will bring about a big change. Though some radiologists already tell women about density, in most cases the letters sent to patients about mammogram results do not mention it.
Though some doctors favor the laws, others resent them, and professional societies of radiologists, gynecologists and cancer experts have raised medical concerns.
The medical groups say telling a woman she has dense breasts may not help her and might even do harm by propelling her into unnecessary tests and treatment. The groups argue that identifying dense breast tissue is subjective, and so two doctors reading the same mammogram may rate the tissue differently. And information about density may confuse women, scare some needlessly and give others a false sense of security, the groups say.
Detractors also warn of a flood of phone calls to already-overburdened doctors and a demand for additional tests that will strain the health care system. There is already a shortage of experts in ultrasound screening, and many doctors simply bristle at the idea of laws controlling what they tell patients.
"I'm always worried when politicians start legislating the medical conversation, especially when it's a medical conversation where the experts don't know what needs to be said," said Dr. Otis Brawley, the chief medical officer and executive vice president of the American Cancer Society and a professor of medicine at Emory University in Atlanta.
But Dr. Brawley said doctors should tell women if they have dense breasts, and he freely admitted that his position seemed contradictory.
"I'm saying I object to legislation that says doctors should have a conversation with their patients that I believe they should have with their patients," he said.
The National Cancer Institute calls dense breasts "a strong risk factor for developing breast cancer." Various studies have estimated that compared with other women, those with dense breasts are two to six times as likely to develop breast cancer. The reason is not known. But dense breasts have more milk ducts and lobes, where most cancers form, so some researchers think the added risk may come from having more of that tissue.
On mammograms, dense breasts look white, and so does cancer, so the tissue can hide tumors. Fatty breasts show up mostly black, so tumors stand out.
Studies have found that when women with dense breasts were given mammograms and then ultrasounds, the ultrasound found tumors that the mammograms missed — but also produced many false positives that led to biopsies.
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