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Three weeks before Cindy’s passing, she sent an email Dr. Nancy Cappello asking her to review a letter she wrote to her local breast health center to illustrate her story and the impact of dense breast tissue on advanced stage breast cancer. In Cindy’s words, “I realize that nothing can change my situation so I write to you today to make a change for all women in your care.”
Cindy’s Story and Her Wish for All Women:
My name is Cindy Spinello and I was diagnosed with stage 4 breast cancer in July 2012. My diagnosis came 3 months after a “normal” mammogram. My breast cancer was masked by dense breast tissue and finally discovered with ultrasound. Many of my metastases were discovered before they found my primary site in the left breast. I had metastases to my lymph nodes, spine, rib, ovaries, and stomach. I recently had a recurrence with metastases to my small colon and the mesentery. My recent scans show no new cancer activity and I am on oral chemotherapy with July marking my four year cancer anniversary. I have a wonderful oncologist and an oncology team. I cannot say enough great things about the care I am receiving at your breast health center.
Despite no family history, regular check-ups, self-breast exams, and mammograms, I was never told I had dense breast tissue which increased my risk of breast cancer and could also mask breast cancer on a mammogram. Since my diagnosis I am a breast cancer patient turned advocate with the hope of sparing other women and their families from my tragic diagnosis. I joined forces with Senator Mensch, The Pennsylvania Breast Cancer Coalition, and Dr. Nancy Cappello of Are You Dense Inc. to successfully pass the density reporting law in our state in 2013. I am currently serving on the density advisory committee with Senator Mensch and The PBCC to monitor the actions and effectiveness of breast cancer imaging centers in Pennsylvania.
I am the PA advocate of Are You Dense Inc. and visited Washington DC in support of the federal density reporting bill. I also work with several researchers of University Of Pennsylvania as a patient advocate on grant submission for breast cancer imaging research. With 40% of women having breast density, many facilities are using the appropriate medical protocol following a mammogram result of heterogeneously or extremely dense breast tissue by recommending a screening ultrasound or MRI. Another community hospital has implemented an Automated Breast Ultrasound System that detected several cancers missed due to density in the first eight weeks of use.
The PBCC and Senator Mensch are now working on mandating insurance companies to pay for additional testing for dense breast tissue and it is my hope and goal to see that all women have the resources they need regardless of finances.
I am just one woman that comprises a group of approximately 45,000 women a year in the United States that are diagnosed with a breast cancer missed and delayed due to dense breast tissue. You may know me only by a digital image on a computer screen but I am so much more than that. I am a mother, daughter, wife, sister, and friend. I realize that nothing can change my situation so I write to you today to make a change for all women in your care.
Epilogue: Cindy’s husband Greg met with the Chief of Medicine at the facility recently and is continuing Cindy’s advocacy for empowering women with information about their breast tissue composition for shared screening decision making.
The following reflection on Cindy Spinello by Nancy M. Cappello, Ph.D. was read at Cindy's service.
I met Greg through an email in March, 2013 as he shared Cindy’s tragic, yet common story, of a missed, delayed and advanced breast cancer diagnosis in spite of never missing her annual mammography appointment. Greg was determined to get the PA density reporting bill to the finish line. The bill had languished for more than a year, facing huge opposition from physician trade organizations.
Greg’s unrelenting determination to ensure that the critical breast health screening issue of dense breast tissue is disclosed to women of PA was a testament to his devotion to Cindy. Greg and Cindy worked with the PBCC and on April 23rd the bill passed the Senate and was headed to the Governor. Cindy’s email to me reflected her joy knowing that their advocacy would change this fatal flaw in breast cancer for other PA women and their families. “I am in tears. I am so happy. I sure hope sharing my story made a difference and that something so tragic can be used for something good,” wrote Cindy.
Cindy and Greg attended the Governor’s bill signing in November, 2013. A few weeks later, I was thrilled to finally meet Greg and Cindy in person as they came to DC to advocate for our federal density reporting bill. They were a super team, schlepping office to office on Capitol Hill sharing Cindy’s story to illustrate the importance of the bill. Cindy and I became fast friends as we shared a common bond – breast cancer and awesome husbands!
In a few months, Cindy would join me at UPENN as I spoke to its faculty about dense breast tissue and Cindy was able to share the PA density reporting legislation. Cindy would later work with a few UPENN doctor-researchers on grants representing Are You Dense, Inc. as a patient advocate.
A few weeks ago, Cindy emailed me to review a letter she wrote to her local hospital about its screening practices. In spite of her own health issues, Cindy was determined to ensure that every woman has access to reliable screening, something she never had access to.
Breast cancer has not made me a better person, nor has it given me a better attitude, but it has connected me with Greg and Cindy – one of the few benefits of this horrible disease.
To Greg and Tyler – I will honor your wife and mom’s legacy and share her story as I advocate across the country to eliminate the grief of a loved one dying prematurely from this disease.
My heart is broken too. I will miss you sweet Cindy – Rest in Peace.
Cindy Spinello, with her husband Greg to the right, speaking at the Pennsylvania Breast Density Reporting bill signing in 2013.
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Please browse the website further to learn about dense breast tissue, use the available resources, read and share stories and consider making a donation to help expose this BEST-KEPT SECRET about the limitations of mammography alone to detect cancer in women with dense breast tissues.
Are You Dense, Inc. is a 501(c)(3) public charity. IRS Tax ID 26-3643216. All donations are tax-deductible as allowed by law.
Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer.
Two-thirds of pre-menopausal women and 1/4 of post menopausal women have dense breast tissue.
Adding more sensitive tests to mammography significantly increase detection of invasive cancers that are small and node negative.
American College of Radiology describes women with "Dense Breast Tissue" as having a higher than average risk of Breast Cancer.
While a mammogram detects 98% of cancers in women with fatty breasts, it finds only 48% in women with the densest breasts.
A woman at average risk and a woman at high risk have an EQUAL chance of having their cancer masked by mammogram.
Women with dense breasts who had breast cancer have a four times higher risk of recurrence than women with less-dense breasts.
A substantial proportion of Breast Cancer can be attributed to high breast density alone.
Cancer turns up five times more often in women with extremely dense breasts than those with the most fatty tissue.
There are too many women who are unaware of their breast density, believe their “Happy Gram” when it reports no significant findings and are at risk of receiving a later stage cancer diagnosis.