Most women — and their doctors — tend to think of mammography as a one-scan-works-for-all test. I learned the hard way that it isn’t.
When I turned 36, I had a baseline mammogram. Then, beginning at age 40, I dutifully had a mammogram every year, convinced that it was the best way to detect breast cancer early should it ever appear. Six weeks after my 11th “normal” mammogram, my gynecologist felt a ridge in my right breast. An ultrasound revealed a quarter-sized tumor. When I received the startling news that I had stage 3C breast cancer, an advanced stage of breast cancer that had spread to 13 lymph nodes, I felt betrayed by the health community. At that time, in 2004, a woman like me with stage 3C breast cancer had a 49 percent chance of surviving five years.
In addition to being frightened and worried about my family, I was shocked. How could I be diagnosed with advanced breast cancer after not missing a mammogram in 11 years? I later learned that I have dense breast tissue, something that had been documented in the reports from the radiologists who read my mammography exams to my primary care physician. None of that information was ever shared with me.
I count my blessings daily that I am still alive and am using my voice to help other women avoid the tragedy of a missed advanced breast cancer. I focus on surviving this disease with preventive measures like eating healthfully and exercising.
There are four categories of breast tissue. Dense breast tissue has less fat and more connective or glandular tissue than fatty breast tissue. The more dense the breast tissue, the higher the cancer risk. To make matters worse, dense breast tissue and cancer both look white on a mammogram, meaning that dense breast tissue can hide or mask the presence of cancer. About two-thirds of premenopausal women and one-quarter of postmenopausal women have dense breast tissue.
Clinicians and medical organizations have turned a blind eye to the decades of science on dense breast tissue. Since my diagnosis in 2004, I have been working to remove the veil of secrecy around this issue and ensure that women are told they have it. Only then will they be able to effectively advocate for personalized breast screening with other tests in addition to mammograms.
I initially took a personal approach, asking my team of doctors to tell their patients — the real consumers of mammography — whenever their mammograms detected dense breast tissue. They refused. My husband and I couldn’t stand idly by and watch the medical community’s apparent lack of concern harm other women, so we turned to lawmakers to help bring essential information about breast density from the medical journals to the examining room. Our journey took us down three tracks: state by state, a federal bill, and a revision to the Mammography Quality Standards Act Regulations.
We started in our home state of Connecticut. After five years of educating legislators and the governor, in 2009 the state Senate and House of Representatives passed and the governor signed the first law in the country requiring doctors to communicate mammographic breast density information to their patients.
Last week, Gov. Bruce Rauner signed the Illinois Breast Density Reporting Law. When it goes into effect on Jan. 1, 2019, there will be 36 states that require the reporting of dense breast tissue as the standard of practice in a woman’s mammography results.
We are leading efforts on Capitol Hill with the reintroduction of the federal Breast Density and Mammography Reporting Act of 2017 (S 2006 and HR 4122). We are also working with the FDA to change the Mammography Quality Standards Act Regulations to include a patient’s breast tissue category in mammography reporting results.
Even with an accumulating robust inventory of research, we continue to encounter opposition couched as “concerns” and “neutrality” to density reporting legislation, primarily from physician organizations such as the American College of Radiology and the American College of Obstetricians and Gynecologists. They argue that mammography is the only technology that has demonstrated a reduction in breast cancer mortality through randomized controlled trials.
I believe that women who choose to have mammograms to detect breast cancer at its earliest stage have the right to know two things: the kind of breast tissue they have, and that the mammogram is less effective than other screening technologies in detecting cancer in dense breast tissue. This information gives women the opportunity to discuss testing options beyond the mammogram with their health care providers.
The issue isn’t limited just to the United States. I have been invited to speak about it in countries ranging from Canada to Italy and Japan. Debate about reporting dense breast tissue to patients is occurring across the globe, with patient advocate organizations leading the charge.
We may be nearing a tipping point in the U.S. as new recommendations from the American College of Radiology acknowledge that dense breast tissue puts a woman at a higher-than-average risk of breast cancer. For women with personal histories of breast cancer and dense breast tissue, the organization recommends annual surveillance with breast MRI. For women at higher risk due to increased breast density alone, ultrasound imaging of the breasts can be added to mammograms after weighing the benefits and risks.
In addition, according to Commissioner Scott Gottlieb, one of the FDA’s goals for 2018 is to “help to ensure women get the most relevant, up-to-date information about their breast density, which is now recognized as a risk factor for breast cancer.”
Legislation and regulations are great. But what we really need is for doctors to get on board with the evidence and share with their patients information about breast tissue density and what it means. This can help women make more informed decisions about further imaging and help prevent deadly collisions with breast cancer.
Nancy M. Cappello, Ph.D., is the founder and director of Are You Dense Inc., and Are You Dense Advocacy Inc.