Imagine you, or a woman you love receiving this breast density notification on their mammogram report: Your mammogram is inconclusive.
My guess is you’d have some questions, AND that’s precisely what I want for you. You deserve more information, you deserve peace of mind, informed choice, accurate screening and knowing with certainty if there is evidence of disease, knowledge of your risk factors in addition to support for next steps.
Sadly, this isn’t the language or followup typically being used for women with dense breast tissue in the United States. More often than not women are told they’re all clear, there’s no evidence of malignancy and advised to return in a year for a repeat mammogram.
Since 43% of women have dense breast tissue,
there’s a 43% chance that your mammogram is inconclusive and
you need further screening.
Breast density is recognized as one of, and possibly the strongest risk factor associated with development of breast cancer, according to the National Institute of Health and a recent study by UCSF . Dense breast tissue is made up of more connective tissue than fatty tissue and it appears white on a mammogram. Cancer also appears white on a mammogram. Cancer is often hidden by the connective tissue in women with dense breasts. One radiologist described it like trying to find a polar bear in a snowstorm.
Women with dense breast tissue are:
At up to six times greater risk for developing breast cancer, this is in addition to the risk of their cancer going undetected by a mammogram .
At greater risk of being diagnosed at an advanced stage de novo than women without dense breast tissue.
At greater risk for recurrence once diagnosed with breast cancer.
When you consider all these factors it’s unconscionable to withhold information, support and advanced screening that affects so many women. The consequences of doing so can be and have been devastating for too many families.
The problem is, it's unlikely that you are being
offered that life-saving screening.
Here’s the good news, a federal law recently passed requiring the Federal Drug Administration develop breast density reporting language that must be included in patient letters and health provider reports.
The not so good news is that there is NO effective date for this law and exact language has not yet been defined. Once in effect it would set a minimum standard for all U.S. states. It’s something but still a long way to go before women are truly informed by their care providers about the risks of dense breast tissue and what it means for them in the screening process and in the treatment process should they be diagnosed with breast cancer.
Currently 37 states require some level of breast density notification after a mammogram (not including Indiana's law).
Note, not all laws require a patient be informed about her own breast density; some laws require only general notification about breast density .
Women deserve answers today and they need information presented to them in a way that clearly explains what their risks are and what next steps are required to ensure a proper and accurate breast screening has been performed.
What do you do if you have dense breast tissue?
First, take a deep breath, you’ve got this! Start asking questions and taking notes. Ask the radiologist at your mammogram appointment if you have dense breast tissue. If your radiologist doesn’t notify you the day of your mammogram or isn’t available to answer, ask if you can make an appointment to discuss your results with them or
Obtain a copy of your mammogram report.
If you have dense breast tissue, what classification, BI-RAD rating, of density do you have, it should state if it’s moderate, very dense or extremely dense.
Insist on an ultrasound or MRI screening of your breasts. This will provide clarity and peace of mind that you can trust the results and make informed choices going forward. Your insurance may ask you to pay out of pocket for the advanced screening. Ask your physician to advocate for you to get the cost covered.
As you can see there’s a lot of gaps in they system for a woman to fall through when being screened for breast cancer, from policy and education to access and funding.
With your help we have the ability to change this by working with women directly and indirectly to provide education and resources for understanding their mammogram report and supporting them with next steps.
We’re taking action to affect policy and language around breast density reporting requirements and follow up support.
Together we can provide access to advanced screening to more women in need and at risk. Please consider making a donation HERE
UCSF Dense Breasts Eclipse All Other Risk Factors https://www.ucsf.edu/news/2017/02/405711/dense-breasts-eclipse-all-other-known-breast-cancer-risk-factors
Dense Breasts, Breastcancer.org
National Reporting Standard densebreast-info.org