Sharing Health Information

Who’s the Boss of Our Breast Health Information?


Sharing Health Information


Post by Nancy Cappello, Ph.D.


Year after year, since I turned 40, I went for my mammography screening. Despite no family history of breast cancer and no known risk factors, my rigorous attention to the established breast screening protocol was my guarantee, in the unlikely event that I was diagnosed with breast cancer, it would be found at an early stage.

It was a cold, dreary, snowy evening in 2004 when my breast surgeon disclosed the biopsy results from the ridge that was felt by my gynecologist within six weeks of my 11th normal mammography report. Dazed by her report, "You have invasive breast cancer," a fog immediately engulfed my mind that did not dissipate for months.

Four weeks later, sitting on the living room couch with my husband Joe, who was within inches of the phone receiver, my breast surgeon revealed the devastating pathology report results from my surgery -- advanced stage 3c breast cancer, which metastasized to 13 lymph nodes. Tears and tight hugs followed the distressing news. We were helplessly confused. What about those normal mammogram reports?

With each introduction of a new doc on my team, I asked the haunting question, "How did this aggressive, late stage diagnosis happen? Each of my docs, with a matter of fact manner, revealed that my 'dense breast tissue' was the culprit. One of my docs even reported that mammography missing cancer on dense breasts is common, as if her response would be comforting as I learned that I was not alone with this missed, delayed and advanced diagnosis.

Recovering from my eight-hour surgery during my three-week respite from work, I took on a homework assignment by scouring the medical literature to find out about this dense breast tissue that harmed me and apparently other women. I was stunned to uncover a decade of studies concluding that dense breast tissue is the strongest predictor of the failure of mammography to find cancer, that 40 percent of women have dense breast tissue, and that there are added screening tests that can significantly increase detection of invasive cancer, in women with dense tissue and otherwise normal mammograms. Studies dating back to mid-1970 also revealed that extremely dense breast tissue, which was unknown to me but reported in my mammography reporting results to my physician for a decade, is also a risk factor for breast cancer.

Making copies of the overabundance of research that I compiled, I shared my homework with my team of docs, expecting them to concur that women must have this information. To my disbelief, each of my docs acknowledged their refusal to tell their patients about the impact of dense breast tissue on mammogram accuracy -- stating that it is NOT the standard of care -- delivering an F on my homework assignment. "You told me AFTER I was diagnosed with advanced stage disease," I declared. "Isn't this breast backwards?"

I quickly learned that the medical community had neither desire nor plans to reveal this important breast health information to women.

I began working with my state legislature and after more drama than a Shakespearean tragedy, Connecticut became the first state in the nation in 2009 to report density as part of a woman's mammography results. As a result of Connecticut's landmark law and the compelling body of research on the masking and causal risk of dense breast tissue, legislators, fueled by women harmed by their dense tissue, championed an additional 18 state density reporting laws. These laws give consumers information about the limitations of mammography to detect cancer while promoting conversations about personalized screening surveillance with health-care providers. Women then become the boss of their breasts.

A study in the Annals of Internal Medicine was released last week. Using past fixed data and computer generated models to project the future, the authors linked results of an ultrasound technology study to density notification legislation, claiming that our laws are excessively costly and save few lives. It is unimaginable that four sentences in a woman's mammography reporting results are causing all this fury. None of the 19 laws require follow up screening; they promote informed discussions between patient and provider. According to the American Medical Association (AMA) Code of Medical Ethics, withholding medical information from patients without their knowledge of consent is ethically unacceptable. Informed consent produces better doctor patient communication and is not based on economic parameters or resource availability.

Patients can only act on what their doctor chooses to disclose. It is potentially dangerous to women's health to withhold the screening and causal risk of dense breast tissue from them. How can women be empowered to make informed decisions about their breast health screening when one of the most critical risk factors is being kept from them? It's time to impart with this information so women become the boss of their breast health information.



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