In 2009, shortly after my diagnosis, I became a founding member of D.E.N.S.E. (Density Education National Survivorsâ€™ Effort),Â a group of women nationally advocating for Breast Density Awareness.Â Â The State of ConnecticutÂ passed a law in June of 2009, mandating that patientsÂ be informed of their breast density. This law has become the rallying point for our group which consists of breast cancer survivors â€“ all of whom received a later stage diagnosis than necessary because breast density interfered with the effectiveness of theirÂ mammogram.
We successfully lobbied our individual states and by the end of 2011 FIVE STATES – Connecticut, Texas, Virginia, New York and California – had passed legislation that requires women to be informed about their breast density and the limitations of a mammogram to identify tumors in dense breasts.
By the end of 2017, there are less than 10 states without an enacted law, introduced law or actively working on a filed law.
But that is still not good enough! I want every woman to know when she has dense breast tissue. Every woman has an equalÂ right to an early breast cancer diagnosis, regardless if her breasts are dense and what state she finds herself in.
We each receivedÂ – year after year -Â Â theÂ one sentence lay report either stating â€œNo evidence of cancerâ€, or,Â â€œResults of your recent mammography examination are normal/benign (not cancer)â€. Year after year, these cancers grew undetected by mammography until the lumps were palpable.
Our point of concern is the one line â€œlay letterâ€.Â Â A letter indicating â€œno cancerâ€Â is clearly an inaccurate representation of reality if a radiologist knows that, due to density, there is a significant chance a tumor could be missed.Â If a â€œsummaryâ€ ofÂ a mammography report doesnâ€™t include any mention of breast density, its inherent risk, and the possible limitations of a mammogram in finding a tumor because of density, then one has to wonder what its purpose is at all.
If â€œearly detection saves livesâ€ is still the golden rule,Â it is a safety netÂ being denied women with dense breasts in the states without the required density disclosure. Women with dense breastsÂ are more at risk for getting breast cancer; tumors are more likely to be aggressive and it is more likely to be missed via mammogram. When women arenâ€™t told about their own breast density and its inherent risk, they are denied the opportunity to protect and advocate for themselves. IÂ want every woman to be empowered to have that discussion with their physicians. Without direct notification by the radiologist, that assurance cannot exist.
Please help me to spread the word about dense breast tissue and the risk that mammograms may not be able to find abnormalities in dense breasts. Additionally, please consider the following:
- Find out what kind of breast tissue you have.
- Discuss with your doctorÂ other screening options if you have dense breast tissue. It is an easy phone call if you have had a mammogram. The mammogram report should indicate your tissue density. If you do not know where your mammogram was done, thenÂ contact your doctor’s office to get the information.
- Spread the word to all your friends and family.
BREAST DENSITY FACTS
2/3 of pre-menopausal and Â¼ of post menopausal women have dense breast tissue
Cancer is 5 times more likely in women with extremely dense breasts
A 2D mammogram willÂ findÂ only 48% of tumors in women with the densest breasts (and therefore elude early detection)
Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer
Cancer recurrence is four times more likely in women with dense breasts
If a mammogram is supplemented with an ultrasound or MRI,Â tumor detection rate increases at least 30%
The vast majority of women are utterly unaware of theirÂ ownÂ breast density. Â A May 2010 national survey conducted by Harris Interactive found that 95 percent of women ages 40+ do not know their breast density and nearly 90 percent did not know it increases the risk of developing breast cancer.