Dr. Nancy Cappello's Story
I did what the medical field and the countless number of cancer advocacy groups told me. I ate healthy, did monthly self exams, exercised daily, had yearly mammograms AND had no first-degree relative with breast cancer. Little did I know at the time that there was information about my health which impacts my life outcomes that was being kept from me – the patient – and others like me.
I call it the best-kept secret - but it WAS known in the medical community. I have dense breast tissue – and women like me (2/3 of pre-menopausal and 1/4 of post menopausal) have less than a 48% chance of having breast cancer detected by a mammogram. In November 2003 I had my yearly mammogram and my "Happy Gram" report that I received stated that my mammogram was "NORMAL" and that there were "no significant findings." Six weeks later at my annual exam in January, my doctor felt a ridge in my right breast and sent me for another mammogram and an ultrasound. The mammogram revealed "nothing" yet the ultrasound detected a large 2.5 cm suspicious lesion, which was later confirmed to be stage 3c breast cancer, as the cancer had metastasized to 13 lymph nodes.
So on February 3, 2004 my life changed when I heard those dreaded words, "You have cancer." I asked what most women would ask – thinking that I was an educated patient following the medical community guidelines - "Why didn't the mammogram find my cancer?" It was the first time that I was informed that I have dense breast tissue and its impact on missed, delayed and advanced stage cancer. What is dense tissue, I asked? Dense tissue appears white on a mammogram and cancer appears white – thus there is no contrast to detect the cancer (It is like looking for a polar bear in a snowstorm). I asked my physicians (now I had a TEAM of them) why wasn't I informed that I have dense breast tissue and that mammograms are limited in detecting cancer in women with dense breast tissue? The response was "it is not the standard protocol."
So I went on a quest – for research – and I discovered for nearly a decade BEFORE my diagnosis, six major studies with over 42,000 women concluded that by supplementing a mammogram with an ultrasound increases detection from 48% to 97% for women with dense tissue. I also learned that women with extremely dense tissue are 5x more likely to have breast cancer when compared with women with fatty breasts and that research on dense breast tissue as an independent risk factor for breast cancer has been studied since the mid 70's. Women with dense breast tissue have double jeopardy – a greater risk of having cancer AND are less likely to have cancer detected by mammography alone.
I endured a mastectomy, reconstruction, 8 chemotherapy treatments and 24 radiation treatments. The pathology report confirmed – stage 3c cancer - because the cancer had traveled outside of the breast - to my lymph nodes. Eighteen lymph nodes were removed and thirteen contained cancer – AND REMEMBER - a "normal" mammogram just weeks before. Is that early detection?
Since then, I learned that there are many women like me with recent normal mammogram reports with a hidden intruder stealing their life. I am on a quest to expose this best-kept secret of dense breast tissue to ensure that women with dense breast tissue receive screening and diagnostic measures to find cancer at its earliest stage - isn't that the purpose of Screening Programs?
Please join the breast density education and reporting grassroots movement by supporting the work of Are You Dense, Inc. to ensure that ALL women have access to an early breast cancer diagnosis. Early Detection Matters as cancers detected early have more treatment options and better survival outcomes. It can spare the life-long anguish of families whose love-ones die prematurely from breast cancer that goes undetected, even with yearly screening.
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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.