Nancy Cappello
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Nancy Cappello ( Marcucci; October 30, 1952 – November 15, 2018) was an American
breast cancer Breast cancer is a cancer that develops from breast tissue. Signs of breast cancer may include a Breast lump, lump in the breast, a change in breast shape, dimpling of the skin, Milk-rejection sign, milk rejection, fluid coming from the nipp ...
activist who was known for her campaign to improve disclosure on the limitations of
mammography Mammography (also called mastography; DICOM modality: MG) is the process of using low-energy X-rays (usually around 30 kVp) to examine the human breast for diagnosis and screening. The goal of mammography is the early detection of breast cance ...
and the difficulty in identifying cancer for those with
dense breast tissue Dense breast tissue, also known as dense breasts, is a condition of the breasts where a higher proportion of the breasts are made up of glandular tissue and fibrous tissue than fatty tissue. Around 40–50% of women have dense breast tissue an ...
. She worked as a special education teacher in her hometown of
Waterbury, Connecticut Waterbury is a city in the U.S. state of Connecticut. Waterbury had a population of 114,403 as of the 2020 United States census, 2020 Census. The city is southwest of Hartford, Connecticut, Hartford and northeast of New York City. Waterbury i ...
, and later as an educational administrator in the Connecticut state department. After being diagnosed with breast cancer in 2003, Cappello started an organization called ''Are You Dense?'' in order to improve notification laws for women with dense breasts, as it was due to not being informed that her cancer had not been identified sooner through non-mammogram methods. By 2019, 37
U.S. state In the United States, a state is a constituent political entity, of which there are 50. Bound together in a political union, each state holds governmental jurisdiction over a separate and defined geographic territory where it shares its so ...
s had passed a breast density inform law as she had advocated, along with a federal law being passed to update the notification rules in February 2019.


Early life and education

Cappello was born in
Waterbury, Connecticut Waterbury is a city in the U.S. state of Connecticut. Waterbury had a population of 114,403 as of the 2020 United States census, 2020 Census. The city is southwest of Hartford, Connecticut, Hartford and northeast of New York City. Waterbury i ...
, on October 30, 1952, to Stephen A. Marcucci, a plumbing business owner, and Antoinette Llorens. She attended Watertown High School and went on to earn a
Master's degree A master's degree (from Latin ) is a postgraduate academic degree awarded by universities or colleges upon completion of a course of study demonstrating mastery or a high-order overview of a specific field of study or area of professional prac ...
in
education Education is the transmission of knowledge and skills and the development of character traits. Formal education occurs within a structured institutional framework, such as public schools, following a curriculum. Non-formal education als ...
and
special education Special education (also known as special-needs education, aided education, alternative provision, exceptional student education, special ed., SDC, and SPED) is the practice of educating students in a way that accommodates their individual di ...
from the
Central Connecticut State University Central Connecticut State University (Central Connecticut, CCSU, Central Connecticut State, or informally Central) is a public university in New Britain, Connecticut. Founded in 1849 as the State Normal School, CCSU is Connecticut's oldest publi ...
. Then, she earned a
PhD A Doctor of Philosophy (PhD, DPhil; or ) is a terminal degree that usually denotes the highest level of academic achievement in a given discipline and is awarded following a course of graduate study and original research. The name of the deg ...
at the
University of Connecticut The University of Connecticut (UConn) is a public land-grant research university system with its main campus in Storrs, Connecticut, United States. It was founded in 1881 as the Storrs Agricultural School, named after two benefactors. In 1893, ...
with a focus on educational administration.


Career

Starting in 1974, Cappello worked as a special education teacher at her former high school and eventually became the city's director of special education. This resulted in her becoming a consultant on such subjects with the Connecticut state education department and she eventually became interim bureau chief for the department in 2007. She retired in 2009 from state work to focus on her advocacy outreach.


Advocacy


Breast cancer diagnosis

The beginning to Cappello's activism regarding mammography was in 2003 after her doctor physically identified a
lump Lump may refer to: * "Lump" (song), a 1995 song by The Presidents of the United States of America * ''Lump'' (compilation album), a 2000 best-of album by The Presidents of the United States of America * Lump (dog), a dog who inspired Pablo Pic ...
on her breast, despite nothing of the sort having been identified in a mammogram weeks earlier and still not being detected in a follow-up mammogram after noticing the lump. An
ultrasound Ultrasound is sound with frequency, frequencies greater than 20 Hertz, kilohertz. This frequency is the approximate upper audible hearing range, limit of human hearing in healthy young adults. The physical principles of acoustic waves apply ...
was able to properly identify the mass, however, as a tumor that had already spread to become a
stage 3 Stage, stages, or staging may refer to: Arts and media Acting * Stage (theatre), a space for the performance of theatrical productions * Theatre, a branch of the performing arts, often referred to as "the stage" * ''The Stage'', a weekly Brit ...
lymph node cancer that could only be treated with
chemotherapy Chemotherapy (often abbreviated chemo, sometimes CTX and CTx) is the type of cancer treatment that uses one or more anti-cancer drugs (list of chemotherapeutic agents, chemotherapeutic agents or alkylating agents) in a standard chemotherapy re ...
and a
mastectomy Mastectomy is the medical term for the surgical removal of one or both breasts, partially or completely. A mastectomy is usually carried out to treat breast cancer. In some cases, women believed to be at high risk of breast cancer choose to have ...
of the affected breast. The reason why the mammograms had been unsuccessful in identifying the tumor was due to her having
dense breast tissue Dense breast tissue, also known as dense breasts, is a condition of the breasts where a higher proportion of the breasts are made up of glandular tissue and fibrous tissue than fatty tissue. Around 40–50% of women have dense breast tissue an ...
with low amounts of fat that prevented X-ray scans from penetrating into the tissue and separating darker fat pockets from the bright white tumor tissue. She was also informed that this type of breast tissue increases the risk of cancer forming, despite cancer being difficult to diagnose at the same time for such tissue. Having been unaware of the existence of dense breast tissue or the frequency of it occurring in women, Cappello was "outraged" at not having been informed earlier, as she would have been undergoing ultrasounds rather than mammograms for the prior 10 years if she had known she had the condition. She estimated that due to the growth and extent of the cancer once it was finally detected, it had been growing for several years and had not been identified by any of her scans during that time period. Her doctors also said that informing female patients about the possibility of dense breast tissue was not a part of the "standard protocol" and so she and her husband decided to start advocating for changes to the protocol.


Creation of advocacy group

The couple interacted with medical experts and state politicians over the following years, resulting in a law and protocol change in Connecticut in 2009 requiring doctors to inform patients about dense breast tissue and to require that medical insurance would cover the alternative ultrasounds such patients would need. Receiving messages from women across the US wanting such laws passed in their states, Cappello and her husband created the non-profit ''Are You Dense?'' in 2008 to advocate for such legal changes. She would go on to speak on the subject internationally at various medical conventions, including in countries such as Japan, France, Italy and Canada. As of 2019, 37 states had passed a version of the breast density inform law that she had advocated for. A federal notification bill was signed into law in February 2019. Cappello was described by '' Imaging Technology News'' as the "founder of the breast density education movement".


Personal life

Cappello was married to her husband, Joseph J. Cappello, in 1974. She was diagnosed with
myelodysplastic syndrome A myelodysplastic syndrome (MDS) is one of a group of cancers in which blood cells in the bone marrow do not mature, and as a result, do not develop into healthy blood cells. Early on, no symptoms typically are seen. Later, symptoms may includ ...
in September 2018 that was identified as having formed during the treatment for her cancer in 2004. A bone marrow transplant was scheduled for December of that year to cure the syndrome, but a series of transfusions and antibiotics were required as treatment and multiple infections occurred in the following months. She died on November 15, 2018, due to a
Clostridioides difficile infection ''Clostridioides difficile'' infection (CDI or C-diff), also known as ''Clostridium difficile'' infection, is a symptomatic infection due to the bacterial spores, spore-forming bacterium ''Clostridioides difficile''. Symptoms include watery di ...
.


References


Further reading

* {{DEFAULTSORT:Cappello, Nancy 1952 births 2018 deaths People from Waterbury, Connecticut Breast cancer Central Connecticut State University alumni University of Connecticut alumni Activists from Connecticut Educators from Connecticut 21st-century American women