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Sealing the Cracks of Breast Cancer Screening: The Connecticut Experiment

Originally Posted Dec 22nd, 2016

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Nancy M. Cappello, Ph.D.
Nancy M. Cappello, Ph.D. Founder & Director,
Are You Dense, Inc. &
Are You Dense Advocacy, Inc.
See Bio

As Seen on Huffington Post

I slipped through a significant and potentially fatal crack nearly 13 years ago when I was diagnosed with advanced stage breast cancer.  Following in the footsteps of my mother's yearly regimen, I never missed my annual mammography exam.  Within weeks of my 11th normal mammogram, during a routine clinical breast exam, my gynecologist felt a ridge in my right breast.  A diagnostic ultrasound illuminated a large lesion, invisible by mammography, and soon after determined to be an advanced stage 3C breast cancer with metastases to 13 lymph nodes.  My new-found team of physicians informed me, when I questioned my late-stage cancer diagnosis, that the culprit was my extremely dense breast tissue. This was the first time, in a dozen years, that I was enlightened with the startling truth, known by the medical community, about the limitations of mammography; the tool that I, and millions of women across the globe, count on to detect breast cancer at an early stage. Blindsided and frightened about my late-stage disease, I was outraged that this critical dense breast tissue information was a secret to most women.  As opportunity lives in the cracks, I was compelled to expose the secret of the impact of dense breast tissue, both its significant masking and independent cancer risk, to decrease a preventable advanced disease and, in turn, reduce mortality from breast cancer.

I was astonished to uncover a decade of scientific studies prior to my diagnosis concluding that 40% of women have dense breast tissue and that there are other tests, such as ultrasound and MRI, when added to mammography, significantly detect early stage and node negative cancers invisible by mammography.  I also was confronted with the brutal fact that my advanced stage breast cancer leaves me at greater risk of dying prematurely from breast cancer in spite of never missing an annual mammography exam. This long list of research compelled me to share my story to policy makers, representing innumerable women with dense breast tissue in my state who continue to fall through the breast cancer screening cracks using mammography alone as a screening for women with dense breasts tissue.  

With a laser like focus, it took five years to relentlessly pursue equal access to an early breast cancer diagnosis for women with dense breast tissue through the legislative process as the density reporting bills were strongly opposed by the Connecticut Society of Radiologists.  The density reporting bill ultimately crossed the finish line in 2009, because of our advocacy focus in addition to the accumulating scientific evidence, catapulting the state of Connecticut as the pioneer and subsequent leader in density reporting and breast health.

Immediately upon enactment of the 2009 law, Breast radiologist Dr. Jean Weigert, who testified a year before in opposition to the density reporting bill, began acquiring data to investigate whether screening breast ultrasound improves breast cancer detection in women with dense breast tissue and a recent normal mammogram result. She recently published her third research paper, The Connecticut Experiment;  The Third Installment:  4 Years of Screening Women with Dense Breasts with Bilateral Ultrasound and speaks of her amazement in a recent article.  "I pulled out the data from my five offices for the years 1 through 4. I tallied it all up, compared it, and found--much to my surprise--we continued to find 3.2 additional cancers per thousand in this cohort of patients with breast tissue density greater than 50%."   Additionally, the study demonstrated a significant progress in reducing the false positive rate of biopsy, often cited a harm of routine ultrasound screening, where ultrasound now equals the acceptable biopsy rate for mammography.  

One of Dr. Weigert's year-4 patients with a recent normal mammogram is 48 years old and at average risk of breast cancer.  Having dense breasts, a recommended adjunct ultrasound uncovered a 1.5 cm,   triple negative, grade 3, invasive ductal carcinoma with one macro metastasis.  If this patient's cancer continued to be missed by mammography and thus delayed, her aggressive cancer most likely would have progressed to a more advanced stage, with less treatment options and poorer survival outcomes.  

As we progress with breast cancer screening guidelines for women of average risk and having dense breast tissue, The Connecticut Experiment reveals that we can significantly improve breast cancer detection by reducing interval cancer and advanced disease. The randomized controlled trials of mammography conclude that the magnitude of the reduction of advanced stage breast cancer is associated with the magnitude of the reduction of mortality.  Dr. Weigert's retrospective study establishes a powerful role for ultrasound in sealing the cracks of breast cancer screening in women with dense breast tissue, creating an opportunity for a reduction in advanced disease and an improvement in survival outcomes, fulfilling the purpose of a breast cancer screening program.

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Dr. Jean Weigert and Dr. Nancy Cappello at Are You Dense Day at the Capitol in Hartford CT

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  • Are You Dense? Fact #1:

    Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer.

     
  • Are You Dense? Fact #2:

    Two-thirds of pre-menopausal women and 1/4 of post menopausal women have dense breast tissue. 

     
  • Are You Dense? Fact #3:

    Adding more sensitive tests to mammography significantly increase detection of invasive cancers that are small and node negative.

     
  • Are You Dense? Fact #4:

    Cancer turns up five times more often in women with extremely dense breasts than those with the most fatty tissue.

     
  • Are You Dense? Fact #5:

    While a mammogram detects 98% of cancers in women with fatty breasts, it finds only 48% in women with the densest breasts.

     
  • Are You Dense? Fact #6:

    A woman at average risk and a woman at high risk have an EQUAL chance of having their cancer masked by mammogram.

     
  • Are You Dense? Fact #7:

    Women with dense breasts who had breast cancer have a four times higher risk of recurrence than women with less-dense breasts.

     
  • Are You Dense? Fact #8:

    A substantial proportion of Breast Cancer can be attributed to high breast density alone.

     
  • Are You Dense? Fact #9:

    There are too many women who are unaware of their breast density, believe their “Happy Gram” when it reports no significant findings and are at risk of receiving a later stage cancer diagnosis. 

     
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