What Does "Breast Density" Mean to You?

Until November 2011, I thought breast cancer was the thing that happened to other women in other families -- women who did not show up for their mammograms, women without a family history. Such naiveté...

Cancer Always Happens to Women Just Like Me.

I had fallen for the myth that women with breast cancer are those with a family history of the disease. Lulled into a false sense of security by early detection and awareness campaigns, many of us have dismissed it as even a distant possibility. In the end - or at the beginning - I found the lump, one Sunday afternoon, after a shower. It was an ultrasound - not any of my 3 mammograms - that detected the tumors, and so launched my family and me into cancer territory and a chain of events that have left us forever changed.

What I Knew Then

I had no family history of cancer. The shock of my diagnosis was numbed initially by a flurry of form-filling, necessitating a foray into the family medical history. This made for lengthy long-distance phone calls to my mother in Ireland, requiring at least one of us demonstrate both the tact of a private-investigator and the determination of a genealogist. I can picture her putting the kettle on, knowing she'll need to sit down with a cup of tea to answer my relentless questions about the health issues of first and second-degree relatives.

Is she certain none of them had breast cancer? What about the time a cousin found a lump? Is she sure it was benign?

Well, she doesn't like to ask, but she'll definitely find out. Then I drag her through a similar inquisition about my father's side of the family.

My mammograms were all clear - all 3 of them. I suppose I should be more understanding when well-intentioned friends assume I did not show up for my mammograms. Like me, they have been duped. Like an untold number of women, we believed that everything we needed to know about our breast health was all wrapped up in the "negative" that had been ascribed to mammograms. But I did show up to my mammograms. Faithfully. I had a baseline mammogram at 35, one at 40, another at 45. Each was unremarkable.

Why wasn't my breast cancer detected? Because each time, information about my breast density was withheld from me, thus denying me access to early detection. Each time, I had been sent on my way, blithely unaware of the sneaky cancer growing in my right breast. It is possible - and according to my doctor and the National Breast Cancer Coalition - highly probable, that the cancer may have been in my body for as many as ten years.

What I Know Now

Knowing my breast density could have changed my destiny. Dense tissue can appear white on a mammogram just like cancer. I like to think that if I knew this, I would have asked if my tissue was dense, possibly camouflaging a cancerous tumor. As an informed patient, a participant in my own healthcare, I would have asked for additional imaging, perhaps an ultrasound that would detect what the mammogram may have missed.

But I didn't know to ask, and no one thought to tell me. Why wouldn't someone have shared such critical information? As a tax-payer living in 21st century America who grumbles about it but is glad to be able to pay for health insurance, I expect full disclosure about the details of my own physiology. I should expect a radiologist to tell me if I have dense tissue.

Now I Am Paying Attention

I am definitely aware. According to The National Breast Cancer Coalition, “more than 75% of women with breast cancer have no family history of the disease and less than 10% have a known gene mutation that increases risk.” It's definitely sinking in: a risk factor doesn't cause cancer; a risk factor only affects our chances of getting cancer.

And so we need a law to require the disclosure of information about our own bodies. Are You Dense? has no active legislative progress in Arizona, yet the Arizona Cancer Registry reported just last year that "one third of all breast tumor cases would be diagnosed after the cancer had spread beyond the breast." After . So what can you do?

Take some control of your destiny - learn about your breast density.

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