Nancy M Cappello
Campaigner for better breast cancer screening
When Nancy M Cappello learned she had breast cancer, and that mammography could not find it, she turned her misfortune into a tireless campaign that led 36 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 – was exactly what she had spent more than a decade trying to help other women avoid. So was her treatment related death.
Cappello, 66, died on November 15 at Waterbury Hospital in Connecticut. Her husband, Joseph J. 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. 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 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.
Cappello needed a mastectomy and an arduous course of chemotherapy and radiation.
When she asked why mammography had not found the tumour, her doctors explained that she had dense breast tissue, which had hidden the cancer from the X-rays. No one had ever told her that before; she had never even heard of such a condition.
Dense breasts have a high proportion of glandular or connective tissue, which blocks X-rays. Breasts that are not dense have more fat, which X-rays penetrate easily.
Dense tissue makes cancer harder to find because the tissue and tumours both show up as white on mammograms and blend together.
Dense tissue, for reasons not fully understood, also increases the risk that cancer will develop.
Cappello was outraged that she had never been informed of the condition and the risks it posed. She had been having regular mammograms for 10 years. She thought she was in the clear.
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 at finding tumours in dense breasts.
If she had had those other tests, she believed, her cancer would have been found at an earlier stage, and she might not even have needed chemotherapy. Because the tumour was so large, she thought it must have been growing for four or five years.
She urged her doctors to begin telling women if they had 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,’ ” Joseph Cappello said in an interview, referring to himself and his wife.
The couple learned that dense breasts are not rare: They occur in about 40 per cent of women who have mammograms. The condition is more common in younger women, but some older women have it as well. It shows up only on mammograms and cannot be detected by touch.
The Cappellos approached state legislators and enlisted medical experts to help make their case. 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.
After that, Joseph Cappello said, women began to contact Cappello, asking how they could get similar laws passed in their states. She quit her job and founded nonprofit education and advocacy groups, both called Are You Dense?
Donna Johnson, the groups’ board president, said that thousands of women called for information and advice over the years, and that Cappello personally returned every call.
Cappello testified before state legislatures and addressed medical conferences in the United States, Japan, France, Italy and Canada.
“She eventually gained influence and support in the medical community,” Joseph Cappello said, “because she was right, and she wasn’t going away.”
Some in the medical profession objected, arguing that not all women with dense tissue have the same increased risk, and that reporting the condition could frighten women and lead to unnecessary screening tests and biopsies.
Cappello never wavered from her conviction that women had the right to know, and to decide for themselves whether to act.
She was born Nancy Marcucci in Waterbury, Connecticut, on 30 October, 1952. Her father, Stephen A. Marcucci, owned a plumbing and oil business, and her mother, Antoinette (Llorens) Marcucci, was a homemaker.
She attended Watertown High School in Connecticut and earned bachelor’s and master’s degrees in education and special education from Central Connecticut State University. She went on to obtain a doctorate in educational administration from the University of Connecticut.
She married Joseph Cappello, now a retired real estate broker and distributor of percussion instruments, in 1974.
Until 1988 she was a specialeducation teacher in Watertown for students with learning, emotional and intellectual disabilities. She became director of special education and consulted for the state education department, which she led as interim bureau chief in 2007. She retired in 2009 to devote herself to advocacy and education.
In addition to her husband, she is survived by her mother; her sister, Angela Boratko; and brothers, Stephen and Mark Marcucci.
Without Capello’s leadership, Johnson said, the organisation she founded is struggling to regroup. “We have,” she said, “14 states to go.”
“She gained influence and support in the medical community because she was right, and she wasn’t going away”