Informing women if they have dense breasts may empower them to ask for additional screening, which could unveil hidden cancer.
Breast cancer is rampant in Jan’s family. Her mom was diagnosed with cancer in the mid-1970s when mammography was in its infancy. Her late great-aunt was diagnosed with breast cancer twice. And her husband’s sister and her daughter are also breast cancer survivors. “For me, it’s always been a question of not ‘if’ but ‘when,’” Jan says.
Because of this, Jan was consistent with her annual mammograms – to be sure that if there was something there, it would be found at an early stage. What Jan did not know was that she was among the forty percent of women who have dense breasts, which increases a woman’s chance of developing breast cancer and can mask cancer on a mammogram. For these women, ultrasound is recommended in addition to mammography.
“The first time I heard this my head just started spinning,” Jan recalls. “What is dense breast tissue? What does this mean for me?”
Jan got her first ultrasound in 2011. Less than a year later after her second ultrasound in 2012, she got the devastating news: She had stage 2A breast cancer.
“The diagnosis did not come as a shock given my family history,” Jan comments. “However, I was astounded to learn, after more than 25 years of getting mammograms, I had never been told about my breast density and the risks associated until 2011. If it weren’t for the ultrasound, the cancer would have continued to grow and spread.”
Jan has been a proud resident of Connecticut for more than 50 years. Little did she know, her state would also lead the way in breast health. In 2009, Connecticut became the first state to put into effect a breast density notification law – requiring dense breast tissue to be included as part of the woman’s mammography reporting results. With the help of this legislation, Jan was offered an ultrasound that ended up detecting her cancer.
At this time, 31 states have passed the density notification law. Breast density is a measurement of the amount fatty tissue versus the amount of fibrous tissue in the breast. The more connective tissue there is, the denser the breast tissue is and the whiter it will look on a mammogram. Both cancer and dense tissue show up white on a mammogram, so looking for tumors in women with dense breasts can be like looking for a snowball in a snowstorm. Because of this, they are often unseen or masked on mammography, and ultrasound can be recommended as an additional test.
There are two breast density notification bills currently pending in both houses of Congress through the advocacy efforts of Are You Dense Advocacy, Inc. Today, the national bill is gaining traction – and it has the support of heavy-hitters, including the American Cancer Society and the U.S. Food and Drug Administration (FDA). In fact, “Modernizing Mammography Standards” is one of the FDA’s major policy goals for 2018, “helping 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.”
At the state level, legislatures in eight states (Utah, Washington, Wisconsin, Illinois, New Mexico, Georgia, Florida and West Virginia) are expected to pass laws requiring health care providers to tell women about their breast density. Nancy M. Cappello, Ph.D. is at the forefront of the legislative efforts to inform women.
Dr. Cappello’s life changed in 2004, when she was diagnosed with breast cancer. For years, she had been doing what the medical field and the countless number of cancer advocacy groups told her, and she had no first-degree relative with breast cancer. However, she had never been informed of her dense breast tissue and its impact on missed, delayed and advanced stage cancer.
She underwent extensive treatment, including a mastectomy, reconstruction, chemotherapy and radiation, and while still receiving treatment, Dr. Cappello embarked on a quest to expose what she calls “the best-kept secret of dense breast tissue.” She created a non-profit organization Are You Dense Inc. and subsequently Are You Dense Advocacy, Inc. to do just that.
Dr. Cappello put her initial efforts, in addition to the state by state reporting efforts and changes to the Mammography Quality Standards Act (MQSA), into the crafting and passage of a national bill to address needs of woman throughout the country.
After treatment, Jan decided to turn her outrage into action. “I immediately started doing research on breast density. Knowledge is power. That’s how I stumbled upon Dr. Cappello, a fellow Connecticut resident.” Jan teamed up with Dr. Cappello, and their advocacy continues until all 50 states have similar legislation or a national standard is in place, with a federal law or changes in the MQSA.
Jan also does everything she can to inform women locally. Being in the retail business, Jan meets several women in her store every day. “If I sense a connection with a woman, I’ll start talking to her about her breast density,” Jan says. Three or four years ago, almost none of the women knew about breast density; however, Jan says women are better informed today.
“If having breast cancer means that I am forever destined to speak to women about their breast density, then so be it.”