Cindy's Story

Name: Cindy
State: Massachusetts
Date of Diagnosis: Nov. 26, 2012
Age at Diagnosis: 58
Stage of Diagnosis: IIIC 
Time from "normal" mammogram to diagnosis: 5 days 
How was cancer detected?: by ultrasound 

I dutifully had my annual mammogram since I was in my 20’s because my mother had breast cancer when she was 42. I always was very relieved when the mammogram report was sent to me with a “normal” reading and “no change from the previous year." Never once did I hear or read of the term breast density, let alone know what it meant. Every year, after each mammogram, I had been lulled into believing that I was fine and fortunate to not be following in my mother’s breast cancer footsteps. It was not until 3 weeks after my annual breast exam that I was shocked to feel an enlarged and hard lymph node. I saw my doctor the next day & he recommended a biopsy and a mammogram. 

Five days later, my doctor said that my mammogram did not reveal any tumors, but my lymph node biopsy was positive for cancer. My first question was, “So it’s not breast cancer since the mammogram was normal? My doctor immediately said “That is not necessarily true” and “you will need a breast ultrasound as part of the full work up to find the primary site.” I was scheduled to see a breast surgeon the next day for a complete workup. I am in the health profession and in over 20 years of annual mammograms, my PCP, my GYN, my radiologists never told me there was any concern that needed further screening or evaluation. I was never notified that I had dense breast tissue and that breast density could not only mask cancers, but was an independent risk factor for breast cancer. I was floored and reeling beyond belief with this new diagnosis.

The ultrasound was done the next day and a breast tumor of .8cm was revealed. The tumor biopsy path report determined invasive ductal carcinoma that had already travelled to my lymph system. It was not until after my surgery involving a lumpectomy and complete axillary node dissection, that 16 nodes were positive, revealing a very aggressive cancer. It was 3 months after my surgery that I came across the AreYouDense.org website. Wow….so many other woman that had breast density and, like me, had never been notified of this, as if it didn’t matter. 

With the knowledge I gained from AreYouDense.org, I realized I could do something productive with my anger. I wanted to get a bill passed in Massachusetts as Dr. Nancy Cappello had done in Connecticut. She gave me the names of women in Boston who had already started working towards filing a Legislative bill that mandates radiologists notify their patients with breast density, along with education and recommendation for additional imaging, as needed. Since then, I have been working with the Massachusetts Density Awareness Coalition (MDAC). I am so grateful to help other women by spreading the word and educating them about breast density AND to work on getting this Mass bill passed to protect woman from false negative mammograms that prevent early diagnosis. This Mass State bill, along with others, need to pass.