Women Want to Know Their Breast Density and Discuss with Docs Screening Beyond Their Mammogram; New Survey Says

Journal of the American College of Radiology Publishes Are You Dense, Inc. and Are You Dense Advocacy, Inc. Survey Results

For years, “experts” have told patient advocate Nancy M. Cappello, PhD, founder of Are You Dense, Inc. and Are You Dense Advocacy, Inc., that their patients would become so anxious over their density reported results after mammogram, they’d be better off without this information.

It’s precisely this thinking, among similar bits of hogwash – Nancy’s words! -- that spurred Nancy to launch her organizations over a decade ago.  These two nonprofits -- one to educate women about their dense breast tissue and its risk for breast cancer, the other to work on legislation making it mandatory that physicians tell patients their density reporting results after having a mammogram -- work in tandem so all women can get access to this potentially life-saving information. 

Many of you now know, thanks to Nancy’s advocacy, that dense breast tissue is an independent risk for breast cancer.  Worse still, it can hide dangerous tumors when looking at a mammogram.  The only thing a technician or physician can see on a mammogram of women with dense breast tissue is white, which can hide tumors as they appear white too.

It’s the “concern” within some in the medical community that women might become frightened over learning their breast tissue density that still persists to this day which spurred Nancy to find out if indeed women would become fearful about getting mammogram density reporting results.  

What were the findings?  After surveying 1,500 women in the U.S., Nancy found that nearly 90% women surveyed, regardless if they have a law passed in their state, want to know their breast density.  And survey results show that conversations between physician and their patients go up when women are notified. It’s easy to conclude that women want to know more about their breast health, not shy away from it. Nancy had the results published in the peer-reviewed Journal of the American College of Radiology; a link is also provided below.

Here’s why mammograms are so important for women with dense breast tissue.  Only mammograms can show the degree of breast density.  If women are shown to have dense breast tissue, in states with laws, they get notified. And as the survey says, conversations between physicians and patients go up after notification, which is a good thing too.  Notification is one thing, but learning from your doc about the next step is crucial.

It's this crucial step that was missing from Nancy’s medical team when she was diagnosed with late-stage 3C breast cancer and which had spread to 13 lymph nodes.  For over decade as she got annual mammograms, not one of them told her that it’s nearly impossible to see cancerous tumors in women with dense breast tissue on mammograms alone.  Only adjunct screening with ultra sound or an MRI can spot tumors in these women.  Adjunct screening can help physicians catch cancers earlier, making them less dangerous and easier to treat.  They also failed to tell her that women with dense breast tissue are at greater risk for breast cancer than women who have normal tissue density.

Through the hard work of Are You Dense Advocacy, Inc., 36 states now have density reporting legislation.  Armed with this latest research, along with decades of science supporting this effort, Nancy will continue to advocate on women’s behalf to make sure they get all their breast health information.  It’s clear. Women said that they want it.

By Are You Dense, Inc. and Are You Dense Advocacy, Inc.

About Are You Dense, Inc. and Are You Dense Advocacy, Inc.
Nancy Cappello, Ph.D. is director and founder of Are You Dense, Inc., a 501(c)(3) public charity and Are You Dense Advocacy, Inc., a 501(c)(4) public charity. Dr. Cappello is the architect of using legislative efforts to standardize the communication of breast density to patients through the patient's mammography reporting results, starting with her state of Connecticut in 2009. Alongside patients turned advocates, Dr. Cappello has visited with and testified before state legislatures, in addition to the MQSA committee of the FDA and led efforts for the introduction of a federal bill in both the House and Senate. She had shared her story at medical and patient-centered conferences across the country and the globe. She is the recipient of numerous awards, including being named a health hero by Parade Magazine and honored for her health advocacy by the Connecticut Women's Hall of Fame.

References
https://www.jacr.org/article/S1546-1440(18)31002-0/fulltext
https://www.areyoudense.org/resources/research-early-detection/