The driving force behind the breast density notification movement -- Nancy Cappello, PhD -- tells her side of the story in the December issue of the Journal of the American College of Radiology. In the piece, she rebuts many of the arguments made by critics of mandatory density notification.
Cappello launched her advocacy group, Are You Dense, in 2008 after being diagnosed with cancer following years of normal mammograms. The group was instrumental in getting the first breast density notification law passed in Connecticut in 2009, and since then it has helped pass laws in 12 other states. Federal legislation is also in the works.
But many breast imaging specialists view the breast density notification movement with some trepidation. Some see it as a slippery slope of government intervention in the practice of medicine and an administrative burden on practices already overwhelmed with paperwork.
Nancy Cappello, PhD, founder of Are You Dense.In her JACR article (Vol. 10:12, pp. 903-208), however, Cappello lays out the arguments in favor of density notification. She relates her own story, in which she was diagnosed with stage IIIC breast cancer that had metastasized to 13 lymph nodes. The 2.5-cm mass was found through a clinical breast examination by Cappello's physician and was confirmed with ultrasound -- after a diagnostic mammogram revealed nothing.
It would be easy to dismiss Cappello's story as anecdotal, but she also explains the evidence in the medical literature supporting the role of breast density in missed cancers on conventional x-ray mammography. Much of this evidence is known to breast health physicians, but -- absent legislation -- it simply isn't communicated to patients, she wrote.
Can't breast imagers be convinced to disclose density status voluntarily? Cappello relates the story of her early efforts at breast density legislation: namely, the passage of a bill in Connecticut in 2005 that required insurance reimbursement of whole-breast ultrasound screening as an adjunct to mammography for women with dense breast tissue. She soon learned from women that such scans weren't being offered, as most centers told women, "We don't do screening ultrasound."
"Using voluntary measures will not ensure that every woman receives this critical breast health information," Cappello wrote.
Cappello uses the Mammography Quality Standards Act (MQSA) as an example of how legislation can effect change in healthcare practice. Until MQSA, efforts to ensure a standard level of quality for mammography were uneven and variable.
Why can't we be friends?
In any event, there's no reason for radiologists to oppose breast density notification, Cappello believes. She cites the example of Dr. Jean Weigert, who, as a representative of the Radiological Society of Connecticut, testified in opposition to the 2009 legislation. One year later, Weigert changed her position after reviewing data she collected indicating a statistically significant increase in cancer detection in women with otherwise normal mammographic findings. (The Google+ Hangout below features Cappello and Weigert on breast density notification.)
Cappello also picks apart other arguments against mandatory breast density notification: that it could lead to patient anxiety and confusion, or scare patients away from undergoing mammography screening in the first place. In countering these objections, she cites studies indicating that most women do not know their density status -- and, indeed, want to know. Women are also willing to be recalled if it might increase the chance of detecting cancer earlier.
Cappello concludes her article by citing the unsolicited interest in her work that has poured in from women around the world as the breast density movement gains steam.
"All the issues that are concerning to the profession cannot be solved by withholding a woman's dense tissue composition from her," she wrote. "Her breast health and access to an early diagnosis are compromised by delaying this communication. Short of a MQSA regulatory change or a national law, our work with patients and physicians for mandated density disclosure through state legislation will continue."
