D.E.N.S.E

I am a 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 have successfully lobbied our individual states and today FIVE STATES – Connecticut, Texas, Virginia, New York and California – have passed legislation that requires women to be informed about their breast desity and the limitations of a mammogram to identify tumors in dense breasts. 30% of American women are now being told about breast dense tissue! But that is still not good enough! I want every woman to know when she has dense braest tissue. Every woman has an equal right to an early breast cancer diagnosis, regardless if her breasts are dense.

We have 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. There seems to be no “fair balance” in patient communication about the benefits of a mammogram versus the risks/limitations of the test in certain circumstance. And, more disturbingly,  no communication required from a radiologist to patient about these specific limitations.

If “early detection saves lives” is still the golden rule,  it is a safety net  being denied women with dense breasts. We are more at risk for getting breast cancer, it is 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.

We at DENSE are asking to join us in ensuring that woman are empowered to have that discussion with their physicians. Without direct notification by the radiologist, that assurance cannot exist.

A federal bill has been introduced to Congress by Reps. Steve Israel (NY) and Rosa DeLauro (CT).   The DENSE movement was thrilled to get the recent support of Komen Advocacy Alliance for efforts both local and national.

Please help me and the other women from D.E.N.S.E 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 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.
  • Help me to get the density bills passed in Connecticut, Texas, Virginia, New York and California rearding Dense Breast Tissue become a law across the entire United States! Send a letter to your state and federal representatives and senators, as well as your state governor and demand that your state adopts density inform legislation! 

Gratefully,

Henda Salmeron                                                        
Founding Member                                                         
D.E.N.S.E. (Density Education National Survivors’ Effort)                                    
Look for us on Facebook:  Henda’s Law
 

“It just might be the greatest cancer risk you’ve never heard of.” 

 Los Angeles Times, “Breast density linked to Cancer Risk”, Karen Ravn, 6/21/2010
 

BREAST DENSITY FACTS

  • 2/3 of pre-menopausal and ¼ of post menopausal women have dense breast tissue
  • Cancer is 5 times more likely in women with extremely dense breasts
  • A mammogram will find 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, 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.

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