this the reason women go for screening?); I hunted for information about my dense breast tissue. Popular women’ s publications and cancer and physician organization’ s websites were void on the subject of this dense condition that prevented my cancer from being detected early, conveying less than a 50 % chance of being alive after 5 years. Searching the medical journals, I uncovered a myriad of studies that first shocked me and later compelled me to bring this critical breast health information to women, since the medical and cancer community had failed to do so and had no plans to routinely tell women about their breast tissue composition.
Why is Density Important to EARLY detection?
Decades of studies have concluded, without a doubt, that the size of a breast tumor, upon discovery is the fundamental determinant of mortality. Women with dense breast tissue are 17 times more likely to have interval cancers( missed on mammogram and detected by palpation before her next mammogram) than women with fatty breasts. Once a cancer is palpable, all promises of EARLY detection have vanished. The assessment of potential benefit and harm of a specific test can be made only if the information given to the patient is complete, accurate and true. Evidence based medicine with more than 150 studies have established that a mammogram alone, in dense breasts, is not a sufficient screening tool for breast cancer.
Armed with knowledge and the decades of science about the risks and screening challenges of dense breast tissue, I began working with the Connecticut Legislature, and in 2005, we passed the first bill in the nation to require insurance companies to cover whole breast ultrasound as an added screening to mammography for women with dense breast tissue. I started receiving invitations to speak and developed a brochure and fittingly named it,“ Are You Dense?” We officially started the corporation, Are You Dense, Inc. in 2008, concurrently filed an application to the IRS as a 501( c)( 3) public charity and launched the Are You Dense? website to educate the public about the risks and screening challenges of dense breast tissue.
These scientific facts that I uncovered in 2004 were researched in the literature for more than a decade( I call it the best-kept secret):
• 40 % of women have dense breast tissue.
• Mammography misses every other cancer in dense breasts.
• Dense breast tissue is a well-established predictor of breast cancer risk.
• Adding ultrasound or MRI to mammography for women with dense breast tissue will significantly increase detection of cancer that is occult( not seen) on mammography. These cancers are invasive, small and at an early stage. We estimate, based on scientific studies and
Connecticut data, that each year 45,000 U. S. women receive their‘ Happy Gram’ report of their mammogram which states normal yet have hidden invasive cancer that will continue to lurk in their dense tissue and, once palpable, will be at an advanced stage. There is no requirement that doctors speak to women about their dense breast tissue even though it predicts the accuracy of a mammogram at any age.
Presently, there are 9 additional states in addition to Connecticut with notification legislation( Texas, Virginia, New York, Hawaii, Maryland, California, Tennessee, Alabama and Nevada) and in the 2013 legislative session, we are working with legislators and advocates from 9 states with density notification bill introductions. Federal breast density notification legislation, introduced by Representative Rosa DeLauro of CT in 2011, is scheduled to be reintroduced soon in the U. S. House of Representatives with plans to introduce a companion bill in the Senate later this spring.
What is all the fuss about additional screening tests to mammography?
Ultrasound and MRI, the current tests most likely ordered as a supplement to the mammogram for women with dense breast tissue, are more likely to have false positives( findings that look suspicious but once biopsied are not cancer). Many of the critics of mammography in general and the
Summer 2013 THE PINK PAPER
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