March 01, 2014

The Leading Edge

Laurie Ristino

This Could Kill You

I was sitting in the salon chair getting my hair done when the call came in. I’d been waiting for two days for the biopsy results and wasn’t going to not answer. When the radiologist asked if I wanted to call her back at a better time, I had my answer. And so, I blurted out, as I waved off my hairstylist, “It’s cancer isn’t it?” In her lovely British accent, she said yes and through a rushed conversation in which I tried to assess my chances of survival, I pried from her the reality that the cancer was “fairly” aggressive. With prodding came the assessment: “I won’t lie to you, this could kill you.” I was 47 with two young children. The white noise that came gushing into my ears, a life so carefully built and nurtured, crumbling at my feet.

My breast cancer is a 9 on the scale of aggressiveness. Unlike This Is Spinal Tap, the amplifier does not go to 11, but in fact, only goes to 9. Of course, prognosis is based upon a suite of factors—not just one measure. It is true that much progress has been made in breast cancer treatment. But the fact of the matter is that there is no cure. Early detection is key. Like many folks, I thought there was only one type of breast cancer. In fact, there are several types. Targeted treatments have been developed for some breast cancers. For example, therapies have been developed to starve cancer by cutting off hormonal supply for breast cancer that is fed by estrogen and progesterone. Likewise, drug therapy that targets cancer fed by the protein that grows breasts cells, HER-2, is also an effective cancer treatment.

But there is breast cancer, called triple negative breast cancer or TNBC, which is non-reactive to these three treatments. TNBC tends to be aggressive and accounts for a disproportionate percentage of deaths given the fact that it accounts for only 15 to 25 percent of overall breast cancers. TNBC is an umbrella term and is likely comprised of several types of breast cancer. The treatment protocol is a default to a chemo cocktail. The majority of women who are triple negative carry mutations in the BRAC1 or BRAC2 gene. These are the genes about which Angelina Jolie has famously raised awareness through her New York Times editorial and elective double mastectomy. I used to think that elective mastectomy surgery was radical. I don’t anymore. I happen to have TNBC without the gene mutation.

I caught my breast cancer via self-breast exam. For this, I am eternally grateful to my youngest child, who still insists her mommy holds her before she goes to bed at night. I had noticed pain in my chest when I held her one night and decided to investigate. In my case, a state of the art 3-D mammography mere months before failed to detect my cancer. Nor, incredibly, was my cancer detected by MRI after diagnosis. The reason for this is that I have dense breast tissue. This makes my healthy breast tissue indiscernible from cancerous lesions. As my breast surgeon put it, looking at my films is looking at white-on-white. Essentially, mammography for me is a useless tool for breast cancer screening. This was all news to me.

And, this dear reader, brings me to the point of this column. If by reading this column, it raises awareness of the potential health implications of dense breast tissue and helps just one reader or someone you love better protect their health, it is worth all the ink these magazines are printed on. Women with dense breast tissue are four times as likely to develop breast cancer.

Fourteen states (Alabama, California, Connecticut, Hawaii, Indiana, Maryland, New York, Nevada, North Carolina, Oregon, Pennsylvania, Tennessee, Texas, and Virginia) now require mandatory breast density notification or the inclusion of awareness provisions in letters to patients. Other states are considering similar legislation. In addition, in the fall of 2013, Congresswoman Rosa DeLauro introduced a federal bill to mandate breast density information to patients and notification that individuals with dense breast tissue may benefit from additional screening.

For more information about breast dense tissue, see areyoudense.org. For more information regarding triple negative breast cancer, tnbcfoundation.org is a resource.

I could conclude this column by saying that my diagnosis has made me appreciate life more (that, in fact, may be true). Instead, I’ll just say this: It’s good to be here with you.

Laurie Ristino

Laurie Ristino is the Director of the Center for Agriculture and Food Systems and an Associate Professor of Law at the Vermont Law School. The views expressed in this column are solely the author’s own.