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Carrie's Story

Name:	Carrie
State:	Indiana
Date of diagnosis:	July, 2014
Age at time of diagnosis:	50
Stage of diagnosis:	Stage 3A metastasized to 7 lymph nodes
Last 'NORMAL' Mammogram	July, 2014
How was cancer diagnosed?	Ultrasound

Carrie's Story:

I was diagnosed with stage 3a breast cancer (28 lymph nodes removed-7 positive) in July 2014, after receiving “normal” mammograms since age 40. Starting in 2011, I was having mammograms every 6 months, each time with a “second look.” The radiology facility told me they were watching an “area of thickness,” but dense breast tissue was never mentioned.

The detailed mammogram reports that my doctors received repeatedly stated I had dense breast tissue and an ultrasound may be required. This information was not in the patient mammography results sent to me. I did not know the limitations of mammography for women who have dense breast tissue. An ultrasound was finally ordered after my conversation with my radiologist about another 'normal' mammography report in July 2014. A 2cm mass was illuminated on the ultrasound which was later determined to be stage 3a breast cancer.

Like the majority of women who are diagnosed with breast cancer, I have no family history. Getting the best imaging was my only chance at an early diagnosis. I underwent a double mastectomy in August of 2014, followed by 20 weeks of chemotherapy and six weeks of radiation. I completed reconstruction in October 2015.

Researching information about dense breast tissue after my shocking diagnosis, I found Are You Dense Inc.and Dr. Nancy Cappello. She informed me that an attempt at a breast density reporting bill was passed in 2013 yet contained subjective language that dense breast tissue disclosure would be limited to only women who would require follow-up care and testing. Dr. Cappello was in communication with Indiana official about amending this language.

I contacted Senator Long and Senator Miller and was a patient advocate on the 'rules' committee of the Medical Licensing Board to amend the language. Unable to come to a consensus, Senator Miller introduced an amendment in February, 2016 removing the subjective language. The amendment was signed by Governor Pence on March 23, 2016 and Indiana is now the 25th state to disclose density to the patient through the mammography report. Press Release with Video and Educational Resources HERE.

My goal was to standardize the communication of breast density in Indiana. This amendment will ensure that all women who have dense breast tissue are notified of this condition, the risks, and the need for additional follow up and discussion with their health-care providers. Hopefully, no other woman will go through what I went through, despite following the screening protocol for women at average-risk of breast cancer.

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AYD In The News

What is Dense Breast Tissue?

How Do I Know if I Have Dense Breast Tissue?

What Do I Do if I Have Dense Breast Tissue?

Are You Dense? Fact #1:
Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer.
Are You Dense? Fact #2:
Two-thirds of pre-menopausal women and 40% of post-menopausal women have dense breast tissue.
Are You Dense? Fact #3:
Adding more sensitive tests to mammography significantly increase detection of invasive cancers that are small and node negative.
Are You Dense? Fact #4:
American College of Radiology describes women with "Dense Breast Tissue" as having a higher than average risk of Breast Cancer.
Are You Dense? Fact #5:
While a mammogram detects 98% of cancers in women with fatty breasts, it finds only 48% in women with dense breasts.
Are You Dense? Fact #6:
A woman at average risk and a woman at high risk have an EQUAL chance of having their cancer masked by mammogram.
Are You Dense? Fact #7:
Women with dense breasts who had breast cancer have a four times higher risk of recurrence than women with less-dense breasts.
Are You Dense? Fact #8:
A substantial proportion of Breast Cancer can be attributed to high breast density alone.
Are You Dense? Fact #9:
Cancer turns up five times more often in women with extremely dense breasts than those with the most fatty tissue.
Are You Dense? Fact #10
There are too many women who are unaware of their breast density, believe their “Happy Gram” when it reports no significant findings and are at risk of receiving a later stage cancer diagnosis.