Are you dense?

A hefty thanks to my good friend AnneMarie over at Chemobrain for alerting me to this topic. She wrote this post about a newly minted law in New York. I’m purposefully ill-informed about such current events; I don’t watch the news and I cherry-pick which stories I follow because the local news is full of big-city sensationalism and the national news wears me out, particularly with the uptick in political/biparty bickering. When election time rolls around, I do some concentrated research on my local and national candidates, but don’t need all the buzzy asides about which congressperson is misbehaving or which serial killer is still at large or who eye-rolled whom. As my wise friend Amy Hoover says, I know about all the current events in my home, and that’s enough to keep up with.

The news of the new dense breast laws did catch my attention, though, thanks to AnneMarie. And it got me thinking. It’s estimated that half of women over age 50 have dense breasts, and one-third of women younger than 50 have ’em. I was one of those under-50s with dense tissue, and these new laws make me wonder how things would have played out for me several years ago had such red-flag measures been in effect.

Breasts are a mix of fatty tissue and dense tissue, and dense breasts make it harder for a radiologist to spot a tumor on a mammogram. Because mammograms use x-ray technology, both tumors and dense tissue appear as white. Is it a tumor? Is it just dense tissue? It’s hard to tell, and if a potential tumor is dismissed as dense tissue, that’s a bad scenario. A study done by Dr Thomas Kolb, a radiologist in New York whose specialty is spotting breast cancer, showed that mammograms missed 60 percent of cancers in women with dense breasts. In addition, women with dense tissue are said to be five times more at risk for getting breast cancer, and dense tissue is a greater risk factor than a family history of the disease. Talk about a double whammy.

Several states besides New York — including California, Connecticut, Virginia, and the great state of Texas — have laws that require mammography providers to inform a woman if she has dense breasts. In Texas, the law is nicknamed Henda’s Law after a Dallas woman, Henda Salmeron, who was diagnosed with stage 2 breast cancer after her 2009 mammogram failed to find the tumor. Salmeron says she’d never even heard of dense breast tissue — on her body or anyone else’s — until she sat in an oncologist’s office hearing the details of her cancer.  While I’m not a fan of big government, considering that estimates say that 95 percent of women are unaware of their breast density, I’m liking the notification laws. Insurance companies will likely cry foul, citing increased costs and the potential of scaring women with such notification. The fact is, breast cancer — any cancer — is scary, and life is hazardous. But isn’t it better to know what you’re dealing with — in this case, dense breasts that may not be properly examined by a mammogram alone? The wording required by the New York version of the notification law is this:

“Your mammogram shows that your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with an increased risk of breast cancer. This information about the result of your mammogram is given to you to raise your awareness. Use this information to talk to your doctor about your own risks for breast cancer. At that time, ask your doctor if more screening tests might be useful, based on your risk. A report of your results was sent to your physician.”

In Texas, the wording is this:

“If your mammogram demonstrates that you have dense breast tissue, which could hide abnormalities,
and you have other risk factors for breast cancer that have been identified, you might benefit from
supplemental screening tests that may be suggested by your ordering physician. Dense breast tissue, in
and of itself, is a relatively common condition. Therefore, this information is not provided to cause undue
concern, but rather to raise your awareness and to promote discussion with your physician regarding the
presence of other risk factors, in addition to dense breast tissue. A report of your mammography results
will be sent to you and your physician.  You should contact your physician if you have any questions or
concerns regarding this report.”

Is this scary? Would opening an envelope to read this send you into a panic? I honestly don’t think so, but I’m on the other side of the island here, having already received the scariest news of “You have breast cancer.” Regardless of the fear factor here, as New York Govern0r Mario Cuomo points out, “Missed cancers, growing undetected until at a later stage, are less treatable, the least survivable and most expensive to treat.”

These notification laws can be traced back to a woman named Nancy Capello. A Wall Street Journal article describes Cappello’s story, which is rather similar to my own. A decade of mammograms for Capello showed dense breast tissue, but she had no idea that such tissue means a less-reliable mammogram.  When her latest annual mammogram showed a suspicious spot, she got an ultrasound to go along with her mammogram. The ultrasound showed a 2.5 cm tumor–the size of a quarter–which a decade of mammograms had missed. In the chain of events that follows a bad report from a radiologist after a mammogram, Cappello found that her stage 3 cancer has spread to 13 lymph nodes.

Capello asked her OB-GYN why women are not informed of their dense tissue and its potential to hide tumors and was told that it’s not standard procedure. While still in the thick of chemo and radiation, Capello set out to change the standard procedure. She founded areyoudense.org  to educate women and require that they be notified of their risk. Capello went on a hunt for evidence-based science–not pink ribbon party lines– and found multiple studies involving more than 42,000 women (ironically, slightly fewer than the number of women who die from breast cancer in the United States each year). These studies show that for women with dense tissue, adding an ultrasound to a mammogram nearly doubles the rate of tumor detection — from 48 percent to 97 percent.

Like Capello, I dutifully got my mammogram every year, even thought I was a long way from 50 when I got my first one.  My annual mammograms started at age 36 because my mom died of ovarian cancer and my OB-GYN (who is married to an oncologist at MD Anderson) is very pro-active. Every year my mammo came back questionable, and the reason cited was dense tissue. However, the citing was never presented in a manner that raised a red flag, and since I was “so young,” that dense tissue didn’t seem like any big deal. One year my OB-GYN sent me to a breast specialist, just to be on the safe side, and I had a biopsy but it came back negative. Fast-forward a few years to DCIS and invasive tumors in one breast, and Paget Disease and 5 cm of cells just waiting to become a tumor in the other. While I knew I had dense breast tissue, I had no reason to think it was anything more than just a particular feature of my body, like the chicken-pox scar on my forehead, or my small feet, or the birthmark on my shoulder. I thought I was doing my due diligence by getting a mammogram every year, despite my young age. The knowledge that we learn after the fact is the most hard-won because it often turns out the be the turning point. How was I supposed to know that my dense breasts were concealing a growing cancer, and that an ultrasound or MRI could have found it years before it had a chance to become a force that would turn my life upside-down? Lessons learned the hard way.

While the notification laws weren’t on the books during my mammogram days, they are now, and hopefully some women who receive these notices will go on to get ultrasounds and/or MRIs to rule out or confirm breast cancer. In an ideal world, every woman would be well-informed and proactive about her health — including her breasts — and would have access to the information, the screening, the guidance, and the care needed to navigate this situation. In an ideal world, we wouldn’t need the government to tell us that our mammogram showed dense tissue and that may be a red flag. In an ideal world, women like Henda Salmeron and Nancy Capello would never be shocked by the knowledge obtained after it’s too late to stop the speeding train that is a cancer diagnosis. In an ideal world, a woman who received a state-mandated letter about her dense breasts and the potential for more serious problems in them wouldn’t have to worry about how to pay for that ultrasound or MRI. But we all know we don’t live in an ideal world.

One thing is certain: I don’t need to worry about my dense breasts anymore, since they’re gone.