When Nancy Cappello learned she had breast cancer, and that mammography could not find it, she turned her misfortune into a tireless campaign that led 36 American states to require fuller disclosure to women about their mammogram results and the limitations of the test.
Her illness – breast cancer that was not diagnosed until it had reached an advanced stage and required chemotherapy – was exactly what she had spent more than a decade trying to help other women avoid. So was her treatment-related death.
Ms. Cappello died on Nov. 15 at the age of 66. Her husband, Joseph Cappello, said the cause was an infection related to myelodysplastic syndrome, a rare blood cancer caused by the chemotherapy and radiation she received in 2004.
Her activism took root in 2003, when her doctor felt a lump in her breast. Ms. Cappello, a special-education teacher and administrator, had had a mammogram just six weeks earlier, with normal results. A repeat mammogram still showed no lump.
But an ultrasound found one – nearly an inch in diameter – and subsequent tests revealed cancer that had already spread to 13 lymph nodes. The stage was 3c, considered an advanced form of the disease, though it had not spread to other organs.
Ms. Cappello needed a mastectomy and an arduous course of chemotherapy and radiation.
Her doctors told her that she had dense breast tissue that had hidden the cancer from the X-rays. She had never heard of such a condition. Dense breasts have a high proportion of glandular or connective tissue, which blocks X-rays. The tissue and tumours both show up as white on mammograms and blend together, making cancer harder to find. Tumours stand out more in fatty breasts, however, because fat looks black. Dense tissue also increases the risk that cancer will develop.
In a 2012 interview with The New York Times, she said that had she known about her dense tissue and the shortcomings of mammography, she would have requested ultrasound or MRI scans, which are better than mammograms at finding tumours in dense breasts.
And if she had had those other tests, she believed, her cancer would have been found at an earlier stage, and she might not have even needed chemotherapy.
She urged her doctors to begin telling women if they have dense breasts. But they told her that that was not part of the “standard protocol,” she said, and declined.
“We said, ‘Then we’re going to make you do it – this is life and death,’ ” Mr. Cappello said in an interview, referring to himself and his wife. The couple learned that about 40 per cent of women who have mammograms have dense breasts.
The Cappellos approached state legislators and enlisted medical experts to help make their case. It took time, but in 2009, Connecticut became the first state to require that women be told if they had dense breasts and that insurance companies cover ultrasound scans for those women.
After that, Mr. Cappello said, women from around the country began to contact them, asking how they could get similar laws passed in their states. Ms. Cappello quit her state job and founded nonprofit education and advocacy groups, both called Are You Dense?
She testified before state legislatures and addressed medical conferences in the United States, Canada, Japan, France and Italy.
“She eventually gained influence and support in the medical community,” Mr. Cappello said, “because she was right, and she wasn’t going away.”
In addition to her husband, she leaves her mother, sister and two brothers.
Some in the medical profession objected, arguing that not all women with dense tissue have the same increased risk of breast cancer, and that reporting the condition could frighten women and lead to a flood of unnecessary screening tests and biopsies. Doctors also said many of the state-mandated letters were too hard for patients to understand.
Cappello never wavered from her conviction that women had the right to know, and to decide for themselves whether to act on the information.
She was born Nancy Marcucci in Waterbury, Conn., on Oct. 30, 1952. She earned bachelor’s and master’s degrees in education and special education from Central Connecticut State University, and went on to obtain a doctorate in educational administration from the University of Connecticut.
From that year until 1988 she was a special-education teacher in Watertown for students with learning, emotional and intellectual disabilities. She became director of special education there and consulted for the state education department, which she led as interim bureau chief in 2007. She retired from the department in 2009 to devote full time to advocacy and education.