The other day I wrote about breast density and the state laws requiring mammogram providers to give notice when a woman they screen has dense breasts. In a curious twist of fate — the sort that makes me take notice of such coincidences — today I read about Molecular Breast Imaging (MBI), which is taking place at my local hospital. Kismet. I love it when that happens.
Dr Stephen Phillips, a radiologist at the Methodist Sugar Land Breast Center, wrote an article about MBI, proudly announcing that my local hospital is the first one in the greater Houston area to offer MBI as a secondary screening. This is no small feat considering H-town is the epicenter of medical care.
Because conventional mammograms don’t always show tumors in dense breasts, MBI is quite promising. In clinical trials, MBI was successful in giving a clearer image than what can be obtained by a regular mammogram.
In addition, MBI can detect three times as many cancers in women with dense breasts, it is said to use one-third the compression pressure as a conventional mammogram, and it contains roughly the same amount of radiation as a digital mammogram. Win-win-win.
A radioactive dye is injected before the screening; if a tumor is present in the breast, it soaks up the radioactive tracer and lights up the screen.
This is great news, awesome news for all the dense-breasted women out there. And that it’s being used right in my neighborhood is pretty great, too. I knew I liked the Breast Center the first time I went there (and not just because of the priority parking spaces!).
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.
Of course it got my attention, amidst the heaps of junk mail, because it’s pink and because when I see a pink ribbon, my brain immediately goes into fight or flight mode as visions of Komen’s money-grubbing dance in my head.
Ok, that’s a bit harsh; Komen isn’t just about money-grubbing. But Pinktober does that to me. I jump to conclusions and get all snarky.
I sat down to read this pink piece of mail, expecting to roll my eyes at yet another meaningless and offensive bit of “awareness” propaganda. Plus, the headline imploring me to put myself first made me think I had free reign to be totally selfish and say, go get a mani-pedi instead of cooking dinner for my people. I had to read more!
Sucked in by the pink haze and the make-me-be-naughty headline, I read on. Page 2 asked a pressing question:
Why, yes, as a matter of fact, I did know that. I also know that mammograms aren’t all that effective at detecting a lump in one’s breast, as I’d been having a mammo every year and at various levels for 5 years before my lump was detected, and even then, it wasn’t detected by a mammo at all but rather by my uber-vigilant OB-GYN, who I credit with saving my life, or at least saving me from a much more protracted and undoubtedly less pleasant cancer “journey.”
Oh, boy, there goes the snark again.
I love the images used in this: the radiantly healthy, young, smiling patient with her gown perfectly draped around her non-cancer-infested body. The state-of-the art screening equipment. The competent and in-control technician. And last but not least, the perfectly round, plump, healthy breast on the screen.
Now I’ve moved straight from snarky to sad, and I’m only on page 2.
Page 3 gets a little more serious, but I’m still sad. That image of the round, healthy breast stays with me. I like that page 3 imparts a serious note, taking care to provide a few snippets of facts & figures to prod one but not scare the bejeezus out of one. The sympathetic tone of, “We know you haven’t scheduled your mammo and we understand, you’re busy taking care of everyone under the sun” is really effective. It’s also very reassuring the way the text suggests “Hey, if the worst does happen and the mammo we suggested you schedule shows that you do in fact have breast cancer, it’s ok; you’re good. We caught it early so you’ll survive.” (You’ll survive, but your life, your wallet, your mind, and most of all, your body will never be the same.)
It goes on to list the signs & symptoms of breast cancer, just in case you aren’t sure. And another suggestion to schedule that mammo today. I love the line about how it won’t cost anything but time. I guess they decided against full disclosure, and nixed mentioning that the smooshing of those nice round breasts is uncomfortable, and that the hospital smell and presence of nightmare-inducing germs everywhere may make you want to run screaming from the building, it might freak out the intended audience and one might decide to chuck the pretty pink pamphlet onto the recycle pile without a backward glance.
I did a double-take at the statistic at the bottom of the page: Did I know that BC claims last year totaled $4.3 million? No, I didn’t know that. That’s a lot of cake.
At first blush, I thought: what kind of nutter is running the accounting office, if they don’t know that I’m one of those claimants? How can they overlook the fact that I’m likely responsible for a quarter of their 2011 claims costs? I’d think that my name is at the top of the list, perhaps with a yellow highlight or maybe an alarm bell that rings, or who knows, a nuclear-reactor type meltdown when my name and ID number are associated with yet another costly claim for United Health Care and Baker Hughes. It’s been a while since I’ve kept an eye on the amount of my claims, but it’s safe to say that it’s up there. Not crazy expensive, like the dresses Ann Romney continues to wear for public appearances, seemingly clueless to the fact that this thing called the Internet exists and it’s easy to check on which designer created her frock and how much it cost, all while she and Mitten claim to be regular folks who don’t consider themselves filthy rich.
Oh good grief, the snark is back. Let me go back and look at that sweet image of the round, healthy, never-to-be-seen-again-on-my-body breast.
Ok, all better.
Thankfully, before I could call the health care PR folks and cuss them out for sending me–me, of all people–a mailing asking if I knew how much my claims had cost them, the Hubs saved me from embarrassing myself and owing a hard-working corporate soul an apology. Just as I was getting really worked up about how in blue blazes could they NOT KNOW that I’ve made hundreds of thousands of dollars in claims because of breast cancer, the Hubs reminded me that we didn’t have United Health Care during the shitstorm of mastectomy, infection, hospitalization, endless labwork, multiple stabs at diagnosing that damned infection, surgery, surgery, surgery, hospitalization, not one but two infectious-disease teams, at-home IV antibiotics, debridement, debridement, home health care, more debridement, more at-home antibiotics, wound vac, the Big Dig aka DIEP reconstruction, ICU hospitalization, more antibiotics, 2 revisions to said reconstruction, and at least 100 visits to the plastic surgeon, yadda yadda yadda.
United Health Care got me once the bulk of my spending frenzy was done. No wonder they send me such nice, pretty mail. Whew, I am SO glad I didn’t get on the horn and issue a blistering diatribe to the first person to answer the 800 number. That would have been soooo embarrassing.
I guess I should be moved by the fact that United Health Care is looking out for the many women who are eligible for a smash-&-snap but who didn’t schedule one last year. And I am. Yes, I know that it’s in UHC’s best interest to have their insured women get their mammos, because screening is cheaper than mastectomies and chemo and radiation. I do like the gentle statistics employed in this publication–nothing too in-my-face, not all gloom & doom, no hint of “do this now or burn in BC hell.” I appreciate the assumption that I’m a grown woman who can decide for myself; personally I’m not one who needs to be told twice when it comes to doing something necessary but unpleasant, but I can forgive the repeated pleas to schedule that mamno now, because not everyone shares my “get ‘er done” mentality, and most women have less flexibility in their schedules than I.
This piece of mail struck the right balance of “you need to do this even thought it might uncover your biggest fear and thrust you headlong into a medical nightmare” and “that said, we’re here and are gonna take care of you.” I give high marks to the copywriters who straddled the idea of scaring us enough to schedule that mammo but not keeping us awake at night wondering what it will be like.
Before I was diagnosed, I didn’t give much thought to breast cancer. Sure, I saw the pink ribbons everywhere and thought the women whose bald heads were under cover of a pink bandana are mighty brave (I still do think that, BTW). Even when I got picked for the melanoma lottery, and even when my sweet mama died a not-so-pleasant death from a reproductive cancer at the still-too-young age of 67, I didn’t think much about breast cancer. I still didn’t think much about it when my awesome OB-GYN learned of my sweet mama’s death and said let’s go ahead and get you started with a baseline mammogram, even though you’re nearly 5 years away from the recommended screening age. Every year my mammo came back funny (not funny ha-ha but funny peculiar, because there’s not a damn thing funny about a funny mammo). I still didn’t think about breast cancer. The radiologists chalked it up to dense breast tissue and said, let’s see what’s going on next year. Then the next year, the images still looked funny, and maybe even a bit more unusual, so I saw a breast specialist and endured a series of biopsies. And still, I didn’t think about breast cancer. That breast specialist said the biopsies didn’t show anything overtly cancerous, and I was young for the cancer beast to come calling, so let’s just keep an eye on it and continue the annual screenings. Even then, I didn’t think much about breast cancer.
Fast forward to the present day, as I sit with a well-done mailing imploring me to schedule a mammogram.
Now I feel the need to call United Health Care, not to cuss anyone out, but to tell them thanks for the pretty pink mailing, but to kindly remove me from the distribution list for future mailings. See, I won’t be scheduling a mammogram this year, or any year in the future. Instead, I go see the unflappably darling Dr Dempsey twice a year for a chest and lymph node ultrasound. It’s not a breast ultrasound, because my breasts contain no breast tissue. Nope, they are made of 100 percent belly tissue, and breast tissue and belly tissue look totally different in a mammo. As far as I know, there’s not a smash-and-snap procedure for the belly. In addition to my twice-yearly screening by my favorite breast surgeon, I get to see my cutie-pie oncologist three times a year. Blood work checks my tumor markers and hormone levels, and I submit to a thorough exam and lecture about my champagne habit.
And for that, I’m grateful.