In 2009, shortly after my diagnosis, I became a founding member of D.E.N.S.E. (Density Education National Survivors’ Effort), a group of women nationally advocating for Breast Density Awareness. The State of Connecticut passed a law in June of 2009, mandating that patients be informed of their breast density. This law has become the rallying point for our group which consists of breast cancer survivors all of whom received a later stage diagnosis than necessary because breast density interfered with the effectiveness of their 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 equal right to an early breast cancer diagnosis, regardless of if her breasts are dense and what state she finds herself in.
We each received – year after year – the one sentence lay report either stating “No evidence of cancer”, or,”Results of your recent mammography examination are normal/benign (not cancer)”. Year after year, these cancers grew undetected by mammography until the lumps were palpable.
Our point of concern is the one line “lay letter”. A letter indicating “no cancer” 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. If a “summary” of a mammography report doesn’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 “early detection saves lives” is still the golden rule, it is a safety net being denied women with dense breasts in the states without the required density disclosure. Women with dense breasts 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 aren’t told about their own breast density and its inherent risk, they are denied the opportunity to protect and advocate for themselves. I want every woman to be empowered to have that discussion with their physicians. Without direct notification by the radiologist, that assurance cannot exist.
If a mammogram is supplemented with an ultrasound or MRI, tumor detection rate increases at least 30%
The vast majority of women are utterly unaware of their own breast density. 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.
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 by getting your mammogram
- Discuss with your doctor 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, then contact your doctor’s office to get the information.
- Spread the word to all your friends and family.