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By Nancy M. Cappello, Ph.D., Director & Founder, Are You Dense Inc & Are You Dense Advocacy Inc. and

Breast cancer screening by mammography reduces mortality from breast cancer. Mammography has been a breast surveillance procedure for four decades with the publication of the first randomized controlled trial, Health Insurance Plan (HIP) in 1966, when I was fourteen years old. My advanced stage breast cancer thirty-eight years later matched the conclusions of the first randomized controlled trial of mammography, which illustrated the limitations of mammography in glandular (dense) tissue

The HIP trial reported that clinical exam was more successful than mammography in women younger than 50. For women older than 50, mammography did much better in diagnosing breast cancer. The study found that women with fatty tissue were significantly more likely to have cancer detected by mammography as compared to those with glandular (dense) tissue. Clinical exams found more cancer in the glandular tissue that was invisible on mammography. As a result of the HIP trial and subsequent randomized trials, despite the challenges of detecting breast cancer by mammography alone in women under 50 and those with glandular (dense) tissue, mammography screening as a one size fits all approach became a population breast health screening practice in U.S. households beginning at the age of 40.

I had a base-line mammogram at age 36 and began my yearly regimen of mammography screening at age 40, never missing an annual exam. I had no family history, exercised regularly and ate healthy. I never imagined that I would have an advanced stage breast cancer at diagnosis, since my health care providers assured me that my yearly mammography screening was the pathway to early detection.

In 2004, six weeks after my 11th normal mammogram, I was stunned when a clinical breast exam at my annual physical resulted in a stage 3C breast cancer diagnosis, which had metastasized to 13 lymph nodes. After I questioned my team of physicians as to why I was diagnosed with late-stage disease after recent normal mammography results, my dense breast tissue was ultimately unmasked to me. After conducting a literature search and obtaining copies of my screening records, I discovered the impact of dense tissue on the reliability of the mammogram to detect cancer. I was outraged that my extremely dense breast tissue, while reported by the radiologist for a decade in reporting results to my physician, just like my cancer, was concealed to me. The conversation about my dense breasts and its impact on my mammography screening, though known by the radiology community as an obvious screening challenge, was never discussed with me by any of my health-care providers – it was the elephant in the examining room.

Right out of the gate from my startling diagnosis, my husband and I, with a laser-like focus, embarked on the unpaved and bumpy road of patient advocacy. We maintained an unrelenting duty to report dense breast tissue to 40% of women who had it, with corresponding dialogue about adjunct ultrasound or MRI screening, which substantially increases detection of small, node negative cancers that are masked on mammography because of dense breast tissue. When my docs refused our request to disclose dense tissue to their patients, we redeployed our efforts to the legislature.

With decades of scientific literature as evidence, we demanded the masking of cancer in dense breast tissue, hidden from the patient, would travel from the medical journals to the examining room, giving women an opportunity for personalized screening, based on their dense breast tissue, causal risks and individual preferences.

Thirteen years after my diagnosis, more than thirty states, have enacted density reporting legislation after Connecticut’s landmark legislation in 2009, inspired by my diagnosis, which represents innumerable women across the globe. A handful of states have also enacted insurance coverage for adjunct screening for women with dense breast tissue, beginning with Connecticut in 2005. However, recommending adjunct screening in average-risk patients with dense breasts, despite continuing compelling research is not the standard of practice in breast cancer screening.

As reported by“ARRS: Don’t Underestimate Breast US in Cancer Arsenal” by Kate Madden Yee, two papers presented at the American Roentgen Ray Society meeting demonstrate the important utility of adjunct ultrasound screening in dense breasts after mammography (both 2D and 3D/Tomosynthesis).

Researchers from Elizabeth Wende Breast Care in Rochester, NY revealed that ultrasound increased the detection of breast cancer in women with dense breast tissue, outperforming digital breast tomosynthesis/3D mammography. Thirty-nine cancers were identified in patients with dense breast tissue. 3D alone found 4 cancers (3 high grade DCIS, one invasive), ultrasound alone found 17 cancers (13 invasive) and 18 cancers were discovered using both 3D and ultrasound. Average lesion size was 2.7 cm with 3D, 1.5 cm w/3D plus ultrasound and 1.3 cm with ultrasound alone. Dr. Destounis reported that of the 17 cancers, invisible by 3D, yet seen by ultrasound, ten were in heterogeneously dense breasts and seven in extremely dense breasts. Dr. Destounis reported to Aunt Minnie, “Seventeen cancers were found on ultrasound alone. If we had only performed tomosynthesis we would have missed these.”

North Shore University Health System, Dr. Giakoumis-Spear discussed findings from a study involving Automated Breast Ultrasound (ABUS) as an adjunct in women with dense tissue. All the women were asymptomatic and had a negative screening (normal) mammogram within the year. ABUS detected 6 (<1.5cm) node-negative invasive cancers for a detection rate of 12 per 1000. Dr. Giakoumis-Spear added that the recall rate was very low, with a call-back rate of 7%. “These results were astonishing to us,” reported Dr. Giakoumis-Spear to Aunt Minnie.

It’s time to kick the elephant out of the examining room, regardless of a state’s density reporting status. The standard of practice must include the unveiling to the patient of the masking of cancer in dense breast tissue on 2D and 3D mammography, discussing adjunct screening to reduce advanced disease and, in turn, reduce death from this life-stealing disease.

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