My Expensive, Mysterious, Dense Breasts

By Ericka Tullis | June 8, 2016 | 5:20pm

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With the exception of my health insurance company, everybody loves my breasts: My kids, who, at aged 12 and 8, harbor vague but fond memories of having been breastfed well into toddlerhood. My husband (big surprise), who has observed their middle-aged growth spurt from a perfectly respectable 32C to a seriously impressive 32DD with great enthusiasm. My friend Jenn, who wishes she could borrow them for special occasions. My OB-GYN, who at my annual exam has been known to compliment them, which might sound really inappropriate but somehow doesn’t feel that way. Even my blind 22-year-old cat, who likes nothing better than a warm, soft surface upon which to recline. The only holdout is my insurer. Why? Because of money.

I have what are known as fibrocystic breasts. Practically speaking, this means that if you felt me up—not a high-school style feel-up that you sneak in when I’m not looking, but a really good, long rub topped off by a few gentle squeezes—you would probably notice that they’re kind of lumpy inside. (Of course, on the outside, they appear nice and smooth, though admittedly not as perky as they were in my 20s. Back then, as Quincy Jones and Robert DeNiro can attest, I was the sort of person who could go braless in a sundress to a party at Lawrence Bender’s house. But that’s another story.) Unlike the scary kinds of lumps that may be indicators of cancer, these lumps in my breasts are fluid-filled sacs that are totally harmless, if occasionally painful as they grow and shrink in response to monthly fluctuations in estrogen.

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Medically speaking, it means that my breasts contain proportionally less fat than that of many other women (which cannot be said of my ass), and are therefore denser. This increased density means that basic mammograms—the kind women over 40 are advised to get annually to screen for breast cancer—are not particularly effective: as the authors of a study recently published in JAMA explained, “Breast density is associated with reduced mammographic sensitivity and specificity.”

In other words, these mammograms, which usually include just two to four pictures of each breast, aren’t likely to pick up the small solid masses that can be an early sign of breast cancer; these masses show up white on the resulting picture, like the dense tissue that already exists. A recent article in the Journal of Clinical Oncology put it plainly: “Dense breast tissue can hide cancer on mammography, especially when the cancer lacks calcifications, resulting in delayed diagnosis and worse outcomes.”

So my OB-GYN advises me to skip the screening mammogram altogether and go straight to a diagnostic mammogram with a follow-up breast ultrasound. Compared to screening mammograms, diagnostic mammograms include more pictures taken from more angles, so they’re better at finding sneaky lumps. The follow-up ultrasound—which, unlike X-ray-based mammograms, can distinguish between solid tissue and fluid—determines whether the found lumps are suspicious and require further examination, or if they’re merely harmless cysts.

Other tests that have been recommended for women with dense breasts include 3-D mammography (a.k.a. tomosynthesis) and magnetic resonance imaging (MRI). Recent studies have indicated that there are pros and cons—ranging from the possibility of “false positives” to cost to the availability of professionals qualified to carry out and/or analyze such tests—to each option. Therefore, at present, there is no single agreed-upon testing protocol for women with dense breasts, and a recent article in the American Journal of Obstetrics and Gynecology advised physicians to “discuss breast density as one of several important breast cancer risk factors, consider the potential harms of adjunctive screening, and arrive at a shared decision consistent with each woman’s preferences and values.”

Despite all this trouble, and as I’ve already mentioned, my OB-GYN loves my breasts. Sure, this is partly because they look great, but it’s also because he cares about me. This is a man who not only did a stellar job delivering my first daughter—he spent the vast majority of the 23-hour labor by my side instead of rushing around juggling a large number of patients in labor as is typical of many doctors these days—but also personally drove me to the hospital when, two weeks postpartum, I came down with a mystery infection and was doubled over in pain. (I didn’t have any other way of getting there, as my husband was assigned the unenviable task of staying home alone with our fussy newborn so as not to expose her undeveloped immune system to the variety of cooties one finds in a hospital.)

This is to say that I trust my OB-GYN, so when he says I need The Combo of a diagnostic mammogram and a breast ultrasound, I know that he isn’t just trying to get me to undergo an unnecessary procedure that my insurance doesn’t want to pay for. I know that he’s trying to help me achieve early detection in order to avoid early death.

And he’s not alone in understanding that breast density matters: 26 states have enacted mandatory breast density inform laws, which require mammogram providers to give patients some level of information about breast density following a mammogram.

In some states, this takes the form of a letter from the provider to the patient informing them that they have dense breasts and should speak with their doctor about any additional tests that may be required to ensure early detection. In other states, providers are actually required to tell a patient what density category—ranging from extremely dense to almost completely fatty—their breasts are in. This matters immensely, because women with extremely dense breasts are both the most in need of The Combo to ensure early detection AND are more likely, for reasons I won’t go into, to develop breast cancer.

Three additional states suggest but do not require breast density notification, and 11 have introduced bills (6 active, 5 inactive) requiring it. There has also been some movement toward amending the FDA’s Mammography Quality Standards Act (MQSA) and/or enacting federal regulations in order to create a national standard to which all mammogram providers must adhere, regardless of which state they operate in.

Given the seriousness of the matter, you would think I would be happy—thrilled, even—to get The Combo at the recommendation of my excellent OB. The problem, though, is that—because The Combo is not defined as preventive care, it falls outside of the set of services (including PAP smears, vaccinations, and, yes, screening mammograms) that my health insurer is required to pay for in full per federal law.

On top of that, because The Combo involves more X-rays and the addition of the ultrasound, it costs much more than a screening mammogram. The combination of the higher cost and the failure to define The Combo as preventive care means that getting what both I and my OB-GYN consider an essential and potentially life-saving service is going to cost me almost $1200 out of pocket every year if I get these services from my local hospital, or about $500 if I get them from a local breast clinic.

I’m lucky in that I personally can basically afford to pay $500 to $1200, but obviously I’d rather not do so. And I know there are plenty of women who are literally unable to pay even the $500 yet aren’t poor enough to qualify for Medicaid, the CDC’s National Breast and Cervical Cancer Early Detection Program, or whatever other publicly-funded means-tested programs cover The Combo. Many of those women probably also do not happen to live in one of the four—four—states that require health insurers to provide diagnostic mammograms and breast ultrasounds at no cost to the patient.

Call me high maintenance, but why should I, by virtue of having dense breasts, be at higher risk from a failure to detect early breast cancer unless I happen to be able to afford $500 to $1200 per year? This effectively amounts to breast-based discrimination. It means that women with dense breasts and lower incomes don’t have access to the same level of care as everyone else. You would think that the insurance companies would want to ensure early detection among all women so that they don’t have to pay the considerably higher cost of late-stage cancer treatment and/or hospice care. But probably some actuary operating out of a basement office ran the numbers and concluded that the odds are in their favor to not cover this, which doesn’t make me feel any better.

One thing you should know about me is that I’m honest, which occasionally conflicts with another thing you should know about me, which is that I’m not stupid. I’m well aware that providers charge insurance companies a lot more for a given service than they charge an uninsured person for that same service. When I relay that information to my honest-but-not-stupid brain, it tells me in turn that I should wise up and tell the nice lady in the hospital or breast clinic’s scheduling department that I am an uninsured customer, so that when I end up paying out of pocket for The Combo, I will only have to pay something in the range of $300. And I admit to having gone that route a couple of times.

But, as of February 2016, thanks to the Affordable Care Act (ACA), the hospital is now required to notify the powers that be that I am uninsured, whereupon I will be fined by the government. I am completely in favor of the ACA: I believe that everyone should have health insurance, and I believe that the government should make sure that that insurance is both high-quality and affordable, and I believe that the voluntarily uninsured should have to cover the considerable costs they impose on society. I just can’t help wanting my dense breasts to catch a break.

So, to review the situation that the whopping 40 percent of women with dense breasts might find themselves in:

You’ve got dense breasts.
Your doctor, in turn, probably has a recommendation of some sort of procedural Combo (in my case, a diagnostic mammogram and a breast ultrasound) to ensure early detection of breast cancer.
You’d like to avoid paying $500 to $1200 for the same result—early detection—that women with non-dense breasts get for free via screening mammograms.
And there is no longer a way for anyone to snag a discount on this price tag by being, or pretending to be, uninsured.

So what are our options? Pay four figures for standard preventive medicine; forgo that standard preventive medicine; try to get our health insurers to change their policies. And as anyone who has ever dealt with a health insurer knows, it’s hard enough to get a human on the phone, much less petition to be granted a personal exception to a policy, much less try to get them to change their policy completely.

But that’s what I’m trying to do, not just for my sake, but for the sake of all women with dense breasts who want equal access to effective early detection services. If you have dense breasts, don’t take any of this lying down on the exam table: call your insurance company and give them a piece of your mind. Email your elected officials and encourage them to join the great states of Connecticut, Illinois, Indiana and New Jersey in requiring that insurance providers cover diagnostic mammograms and breast ultrasounds for women who need them. Your dense breasts are densely lovable, so ask them—where’s the love?

Ericka Tullis is a health policy analyst in Los Angeles, CA. When she’s not working, caring for her family, or riding horses, she can be found on the phone with Blue Shield in bumper-to-bumper traffic.

Illustration by Angelica Alzona.