From Patient to Advocate

From Patient to Advocate

This piece was originally published in the November 2017 issue of electroindustry.

Nancy Cappello, PhD, Founder and Director, Are You Dense Inc. and Are You Dense Advocacy, Inc.

Education is my passion. As a teacher and administrator, I know the importance of appropriate resources. In 2004, I found that these principles also rang true for health.

Six weeks after my eleventh normal mammogram, my doctor felt a ridge in my right breast and ordered an ultrasound, which detected a large lesion. I had stage 3C breast cancer with 13 metastasized lymph nodes. According to the American Cancer Society at that time, the five-year survival rate was less than 49 percent.

I was shocked and scared. Dense breast tissue appears white on a mammogram, as cancer does. Physicians were not required to share dense breast findings with patients; this protocol did not sit well with me. I uncovered two decades of research on the limitations of seeing cancer in dense breasts by mammography, and that women with dense tissue have a greater risk of developing breast cancer. I found that supplementing a mammogram with ultrasound or MRI can nearly double cancer detection. My husband and I contacted a state senator, who championed this issue before the Connecticut legislature.

As I endured chemotherapy, radiation, and surgeries, I proceeded from patient to advocate. Connecticut enacted an insurance law in 2005 for ultrasound screening as an adjunct to mammogram for women with dense breast tissue. After a year, when women were still not routinely told of the impact of dense breast tissue on the reliability of mammograms, we started Are You Dense, Inc., a nonprofit that educates the public about the risks and screening challenges of dense breast tissue as well as the effects of missed, delayed, and advanced breast cancer.

Now, 31 states have density reporting laws. We continue to advocate for a national standard, a federal reporting law, and changes to the Mammography Quality Standards Act to include a woman’s breast tissue composition as part of her mammography reporting results. The MITA State Government Relations Committee actively supports the advocacy efforts of Are You Dense.

While I am honored to inspire others to advocate for improved breast health, I recognize that a few sentences in a mammography report do not replace education and dialogue between patient and provider. Each year, 40,000 women die from breast cancer. Early diagnoses confer more treatment options and better survival outcomes. Just as I fought for education equality, I won’t stop until all women with dense breasts have the resources they need.

For information on MITA’s State Government Relations Committee, contact Cassandra Ricci,

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