By Nancy M. Cappello, PhD
Breast cancer screening by mammography reduces mortality from breast cancer. Mammography has been a breast surveillance procedure for four decades with the publication of the first randomized controlled trial by Health Insurance Plan (HIP) in 1966. My advanced stage breast cancer thirty-eight years later matched the conclusions of the first randomized controlled trial of mammography, which illustrated the limitations of mammography in glandular (dense) tissue.
The HIP trial reported that clinical exams were more successful than mammography in women younger than 50. For women older than 50, mammography did much better in diagnosing breast cancer. The study found that women with fatty tissue were significantly more likely to have cancer detected by mammography as compared to those with dense tissue. Clinical exams found more cancer in the glandular tissue that was invisible on mammography. Because of the HIP trial and subsequent randomized trials, and despite the challenges of detecting breast cancer by mammography alone in women under 50 and those with dense tissue, mammography screening as a one size fits all approach became a population breast health screening practice in US households beginning at the age of 40.
I had a baseline mammogram at age 36 and began my yearly regimen of mammography screening at age 40, never missing an annual exam. I had no family history, exercised regularly, and ate healthy. I never imagined that I would have an advanced stage breast cancer at diagnosis, since my healthcare providers assured me that my yearly mammography screening was the pathway to early detection.
In 2004, six weeks after my 11th normal mammogram, I was stunned when a clinical breast exam at my annual physical resulted in a stage 3C breast cancer diagnosis, which had metastasized to 13 lymph nodes. After I questioned my team of physicians as to why I was diagnosed with late-stage disease after recent normal mammography results, my dense breast tissue was ultimately unmasked to me.
After conducting a literature search and obtaining copies of my screening records, I discovered the impact of dense tissue on the reliability of the mammogram to detect cancer. I was outraged that my extremely dense breast tissue, while reported by the radiologist for a decade in reporting results to my physician, just like my cancer, was concealed to me. The conversation about my dense breasts and its impact on my mammography screening, though known by the radiology community as an obvious screening challenge, was never discussed with me by any of my healthcare providers – it was the elephant in the examining room.
Right out of the gate from my startling diagnosis, my husband and I, with a laser-like focus, embarked on the unpaved and bumpy road of patient advocacy. We maintained an unrelenting duty to report dense breast tissue to the 40% of women who had it, with corresponding dialogue about adjunct ultrasound or MRI screening, which substantially increases detection of small, node negative cancers that are masked on mammography because of dense breast tissue. When my doctors refused our request to disclose dense tissue to their patients, we redeployed our efforts to the legislature.
With decades of scientific literature as evidence, we demanded the masking of cancer in dense breast tissue, hidden from the patient, would travel from the medical journals to the examining room, giving women an opportunity for personalized screening, based on their dense breast tissue, causal risks, and individual preferences.
Fourteen years after my diagnosis, as of May 15, 2018, thirty-five states have enacted density reporting legislation after Connecticut’s landmark legislation in 2009, inspired by my diagnosis. A handful of states have also enacted insurance coverage for adjunct screening for women with dense breast tissue, beginning with Connecticut in 2005. Recently, the American College of Radiology acknowledged that women with dense breast tissue have a ‘Higher than Average Risk’ of breast cancer, publishing recommendations for breast cancer screening beyond mammography.
It’s time to kick the elephant out of the examining room, regardless of a state’s density reporting status. The standard of practice must include the unveiling to the patient of the masking of cancer in dense breast tissue on 2D and 3D mammography, discussing adjunct screening to reduce advanced disease and, in turn, reduce death from this life-stealing disease.
I am honored to participate in the AHRA Annual Meeting to present “The Unmasking of Cancer in Dense Breasts: The Elephant in the Examining Room,” sponsored by FUJIFILM, on Sunday, July 22 from 4:30-5:30 PM.
Join me on Monday, July 23 from 11:30 AM-12:30 PM as I will join FUJIFILM at Booth #801 in the Exhibit Hall. I am looking forward to reconnecting with AHRA members and meeting new ones. I will have a limited supply of the ever popular Are You Dense pink luggage tags on hand – don’t leave Orlando without one!
Nancy M. Cappello, PhD is the founder and director of Are You Dense Inc. And Are You Dense Advocacy Inc. She can be reached at firstname.lastname@example.org.