06 Jul 100 Miles Distance Can Change Your Life in Health Care
Post written by Nancy Cappello, Ph.D
Meet Jan and Cindy -- two women who are similar in several ways. Both are mothers, wives, dutiful and health-conscious patients. Each had a mother with breast cancer; each never missed their yearly mammography screening and, like 40 percent of women, each has dense breast tissue. Diagnosed with invasive breast cancer within three days of each other, Jan and Cindy experienced two divergent outcomes after a "normal" mammography report. Jan had an early stage cancer with no node involvement. Cindy had an advanced stage with metastases to 16 lymph nodes. What's the culprit? One hundred miles.
Jan resides in Connecticut. Since 2009, she's been informed of her dense breast tissue when Connecticut facilities began including information about dense breast tissue in patients' mammography report results. As in the past two years, she followed up her 2012 'normal' mammography report with a screening ultrasound. A suspicious lesion was discovered which was later determined to be invasive stage 1B breast cancer.
Cindy resides in Massachusetts. Three days following Jan's diagnosis, Cindy was diagnosed with advanced stage breast cancer following her discovery of an enlarged lymph-node eight days after her 'normal' mammography report. "I was reeling beyond belief," states Cindy when she received her shocking and tragic results. Even though Cindy has a higher risk of breast cancer, given her mother's breast cancer diagnosis at age 42, she was never informed of the impact of dense tissue on the accuracy of her mammogram. Adjunct screening was never discussed.
My advanced-stage cancer diagnosis was the impetus of Connecticut's imperative for density reporting and adjunct screening ultrasound for women with dense breast tissue. Like Cindy and Jan, I was a faithful patient, never missed my annual mammography screening. In 2003, my 11th mammography results were reported as 'normal.' Six weeks later, a ridge in my breast was discovered during an annual exam.
The diagnostic mammogram revealed nothing, yet the ultrasound illuminated a quarter-size lesion - stage 3C, an advanced cancer with metastases to 13 lymph nodes. Shocked and confused that my cancer was so advanced, I questioned my docs why mammograms failed to detect cancer at an early stage. It was only after this inquiry was I informed of my extremely dense breast tissue and its impact on the accuracy of the mammogram.
Dense tissue is a barrier to mammography 'seeing' cancer; dense tissue appears white on x-ray and so does cancer -- it's like looking for a polar bear in a blizzard. Most radiologists record a woman's breast tissue composition, in one of four categories from fatty to extremely dense, in the reporting results to the woman's referring physician. However breast tissue composition is seldom shared in the patient's mammography report results. I call this report the "Happy Gram."
Since 1995, study after study concludes that dense breast tissue is the strongest predictor of the failure of mammography to detect cancer and later stage cancers would be reduced if adjunct tests were added to mammography.
What if Cindy lived 100 miles south and was informed of her dense breast tissue and had adjunct screening in 2009? There is a research-compelling probability that her cancer would have been detected - exchanging her advanced diagnosis with an early one. A year before Cindy's diagnosis, Ellen, also from Massachusetts, contacted me with the same common story -- a normal mammogram months before an advanced-stage diagnosis. She wished to advocate for density reporting legislation in Massachusetts.
Tragically, Ellen passed away in June, 2013 before her mission would be accomplished. Her husband Damien and an expanded coalition, consisting of Cindy, Ellen's devoted colleagues, and dense-breasted women with delayed diagnoses are working to protect Bay State women from missed, delayed and advanced stage cancer. These Commonwealth crusaders are continuing Ellen's pioneering efforts.
Too many women who are faithful with their yearly mammographic screening have been denied equal access to an early diagnosis, which convey less treatment options and worse survival outcomes. Consumers have a right to know about this risk.
Fourteen states have followed Connecticut's lead with density reporting laws. Additionally, a federal density reporting bill has been introduced in the House of Representative. The FDA plans to publish proposed regulations to the Mammography Quality Standards Act (MQSA) to include breast tissue composition in the patient's mammography results, creating a national reporting standard.
Which narrative would you want -- Jan's or Cindy's?
Don't allow state borders to obstruct access to an early diagnosis. Ask your health care provider about your breast tissue composition and risk factors. Together, devise a screening surveillance to ensure the best possible outcome. It may make the difference between life and death.