Dear AuntMinnie Member,
This past week we received the devastating news that breast density advocate Nancy M. Cappello, PhD, had died.
Nancy died the morning of November 15 from complications related to the original breast cancer she was diagnosed with in 2004. It was that diagnosis that led her to form Are You Dense, an advocacy group that worked to increase awareness of the relationship between dense breast tissue and breast cancer.
Nancy's original diagnosis came as a shock to her, especially as she had complied with breast screening guidelines and received several normal mammograms. Her stage IIIC breast cancer was found via clinical breast examination as a 2.5-cm lump.
But even more shocking to Nancy was the reaction of her healthcare providers. She was told that it was common knowledge that conventional x-ray mammography didn't work well in women with dense breast tissue -- such as hers. Despite this knowledge, Nancy was never referred for supplemental imaging, such as ultrasound or breast MRI.
Nancy's breast cancer was treated successfully, and she soon embarked on an ambitious effort to change how patients were informed about dense breast tissue. Starting in her native Connecticut, she and other breast density activists were successful in passing legislation requiring that women with dense breast tissue be notified of their status and offered supplemental imaging. Now, 10 years after she started, nearly three dozen states have density notification laws on the books.
But Nancy wasn't about to stop. She continued her advocacy work even after receiving a diagnosis in September of myelodysplastic syndrome. She believed the diagnosis was related to the chemotherapy and radiation treatment she received for breast cancer 14 years previously -- treatment that had to be aggressive due to the advanced stage of her disease at the time.
In losing Nancy, the breast density movement has lost a tireless warrior and advocate for patient rights. But there's still time to create a lasting memorial to the work that Nancy did -- by naming after her federal breast density legislation that's currently being considered in the U.S. Congress.
A federal Nancy M. Cappello Breast Density Notification Act would standardize breast density reporting requirements and eliminate the patchwork of state laws. It would also dovetail with an initiative underway at the U.S. Food and Drug Administration to standardize the way breast density is reported.
We can think of no better way to honor the memory of someone who contributed so much to the field of women's imaging and patient rights.
We'll miss you, Nancy.
