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I woke up this morning with a mammogram debate hangover. Enough with the new guidelines, already! But still, what do we do with the mammogram-shaped holes in our lives?

who doesn't abhor a vacuum?

who doesn't abhor a vacuum?

As it turns out, nature abhors a vacuum almost as much as I do, and there are already some interesting and, fingers crossed and lucky rabbit’s foot in hand, promising developments on the horizon. One of the most interesting is the recent research into microRNA. This type of protein molecule could lead to more accurate cancer screening than lousy mammograms or the crude bio-markers we have today, like PSA (for prostate cancer) and CA 15.3 (for breast cancer).

What’s miRNA?

Think back to your high school biology class… OK, too far? Then think back to the advent of biotechnology, and the massive Human Genome Project, and how companies like Genentech and Amgen were going to cure cancer and generate new organs and allow us to live forever. Heady days! Someone made a killing in the market, no doubt. As for the rest of us…. Read More »

Posted in Breast Cancer, Uncategorized | Leave a comment

The New York Times ran this somewhat smug discussion of the new mammography guidelines, in which the author suggests that women dismiss the guidelines because they are confused or overly emotional. Hmmmm. Hard Truth + Silly Women = Hysteria. Where have I heard that argument before? Oh yeah, all of human history — the parts not written by women, anyway. Without addressing the data that lead to the new guidelines, I’d like to simply offer a few clarifying points for the scientists who are so befuddled by the reaction:

Imagine that you’re a health consumer. It’s not that difficult, there are only a couple of details you need to muster: (1) that you’re concerned about breast cancer, the number 1 killer of women aged 15-59, and (2) that the medical experts have insisted, throughout your entire post-adolescent life, that mammograms do indeed save lives. So although the tests are a gawd awful humiliating misery, you subject yourself to them annually, or plan on doing so when you’re older.

Never mind!

Never mind!

Then one year, these same medical experts take another look at the data during a tense debate on medical costs and issue a Rosanne Rosannadanna-style “Oh. Never mind.” And this “never mind” happens in the same year in which other experts say, Hey, you know that BPA that we insisted is perfectly safe? Well we’re rethinking that. And, uh, sorry about possibly predisposing you or your children to cancer.

And by coincidence the mammogram Never-Mind also happened just a few years after those same medical experts did an epic flip flop on hormone replacement therapy (HRT). That Never Mind came after years of selling HRT as the new fountain of youth that would stave off hot flashes, sleep problems, alzheimers, heart disease, and would pretty much usher us into health nirvana well into old age. And despite finding that HRT increases breast cancer risk, HRT is still being prescribed by doctors and marketed by pharmas. In other words, it’s still an individual choice, now informed by some troubling new information.

Getting back to the mammography guidelines: last month, the radiology and breast imaging director at my regional cancer center (a National Cancer Institutes affiliated clinic) came out strongly in favor of women aged 40 to 49 continuing to have annual mammograms. There’s more than enough debate among the experts out there to justify any woman deciding she’d just as soon keep her options open for now.

So, the reason the scientists and mathematicians are confused is that they’re oversimplifying the issue. It’s not just about the tidy numbers or pretty graphs. It’s about consumer trust, and personal health risk, and individual choice. Consumers have learned, from the history of epic reversals and re-reversals by the experts and policy gurus, that these issues are a complicated, that one-size answers inevitably don’t fit, and that they boil down to a question of individual choice.

This brings me to my final point: women are not demanding mammograms, they’re demanding choice. Plenty of women are already foregoing annual mammograms and undoubtedly view the new guidelines as a welcome absolution from nagging doubt. But others quite reasonably fear that the health insurers will now phase out coverage of mammograms for women under 50. Women are afraid that insurers will rob women of the choice to get a mammogram, thanks to the guidelines. That’s what’s making women angry.

This has nothing to do with mammograms, everything to do with missing Gilda Radner:

A Poem by Gilda Radner (a.k.a. Roseanne Rosannadanna)

Doctors are whippersnappers in ironed white coats

who spy up your rectums and look down your throats

And press you and poke you with sterilized tools

And stab at solutions that pacify fools.

I used to revere them and do what they said

Till I learned what they learned on was already dead.

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Earth to public health pundits: you can’t correct one extreme by swinging to the opposite extreme.

Here’s a super-important issue that this whole mammography debate is only glancing off: no one is offering anything to pre-menopausal women. Yes, I understand that the epidemiology shows little or no benefit. Yes, I understand that (1) the benefits of mammography were grossly oversold, and (2) the risks were grossly understated. Those were preventable mistakes, by the way (don’t get me started on the failure of our medical system to provide breast health specialists).

But, epidemiology aside, if you spend a month in the infusion center at any cancer clinic, you will meet women in their 30’s and 40’s with terminal breast cancer precisely because their doctors pooh-poohed the mammo (”you’re too young for breast cancer”). No amount of epidemiology or number crunching can get around the fact that, for some women, mammograms DO save lives, or at least breasts.

What the debate is mostly ignoring so far is this: that there’s a difference between public health recommendations and personal choice, but that in our current regulatory and insurance atmosphere, decisions in the public realm can obliterate choices in the second. Epidemiology is an important input into public health decision making, but is not the final answer in personal decision making, especially when our tools for identifying “high risk” women suck even worse than mammography. Are you Ashkenazi Jewish? No? Then no mammo for you. That’s what our individual risk assessment tools boil down to – BRCA. The cause of maybe 10% of breast cancers.

My two cents (okay, maybe this is four cents):

(1) There are still excellent reasons to get a mammo under the age of 49 (lost in the population data is the fact that some lives and breasts ARE saved), and

(2) doctors have been worse than abysmal at understanding and communicating the risks, and

(3) women under 50 should be allowed to choose and should be offered the information needed to choose intelligently, but

(4) the task force recommendations will likely eliminate this choice by leading insurers to drop pre-meno mammo coverage like a nuclear potato.

All of which makes me sad, and worried, that if the choice to obtain a mammogram is taken away from pre-menopausal women, that there will be more women like the ones I met at the cancer clinic.

Medicine has done an abysmally poor job at explaining the risks and benefits of mammograms to pre-meno women. But the answer to that failure isn’t to abandon this population altogether. That’s just swinging from one simplistic extreme to another.

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Endocrine disrupters are chemicals that mimic the hormones in our bodies (often estrogen), and just like the natural versions, they cause our cells to stop, start, or change their functions. Exposure to these chemicals is known to cause birth defects, cancer, and a host of other health problems in animals, and is suspected of doing the same to people. Still, plenty of people, but especially the chemical industry, will tell you that these chemicals are perfectly safe at the levels at which we’re exposed.

The problem and source of controversy is two-fold: (1) no one really knows how much we’re exposed, and recent pilot studies indicate that it’s a lot more than the chemical industry claims, and (2) if you decide you would rather play it safe while more research is conducted, too bad. The industry and government have already decided for you that you’re going to get lots and lots of these chemicals in almost every product you buy.

Is this a cause for panic?  Better to say it’s a cause for getting off your comfy assumptions and getting involved. Too busy or confused?  Join the party, and here’s some motivation to help with that:

Read More »

Posted in Breast Cancer, Environment and Health | 5 Comments

A year and a half ago, I found myself strapped to a backboard in the back of an ambulance, unable to answer a simple question. My car had been totaled by a driver who was too important for red lights, giving me what a yogi would describe as a perfect opportunity to practice “just being”. But then the paramedic riding with me explained that the major trauma hospital was turning away arrivals due to workload, and he wanted to know which of the other two major hospitals they should take me to.

In that moment I realized that I had absolutely no basis for choosing between them. I flashed on recent incidents, one at each hospital, in which a patient was killed through stupid and preventable error (for example, by injection of improperly labeled cleaning fluid instead of MRI contrast agent). And I recalled at least one near-fatal horror story for each hospital from friends and colleagues. I wasn’t thrilled about trusting my life to either, and certainly had no basis for choosing between them. So there I was, in not a little pain and with an ever-so-gradually collapsing lung, at a loss for choice in what is supposed to be a thriving, consumer-choice-enhancing free market for health care services.
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FoghornChickenhawkRemember Henery Hawk, that little chicken hawk who was always pestering Foghorn Leghorn? That’s the image that should come to mind the next time you read of a little 12-person (or 20-rat, or 40-mouse) study claiming to have found a cure for cancer, wrinkles, or even boredom. It’s not that small studies are worthless (they’re not), it’s that they’re worthless for making Big Decisions about treatment, lifestyle, risk, or where to spend your money. The reason for this, in layman’s terms, is chance.

When a research study sets out to really prove or disprove something, it enlists hundreds or thousands of participants. This makes the study very, very expensive. A small army of health professionals, administrative staff, software engineers, and research assistants are needed to train, treat, and track that many participants. Why go to all that expense, all the grant writing and organizing and stress and strain? Because it’s the only way to rule out chance or, as epidemiologists like to call it, sampling error
. Read More »

Posted in Toolkit, Uncategorized | 1 Comment

While I was working on the previous post (introducing the you-are-not-goo tool), I ran across a textbook case study for Tool #1, and a reminder of how useful this one simple rule can be. ABC News (the Australian Broadcasting Company) online ran an article reporting on an experiment involving nano-sized metals (like the type commonly used in sunblocks and mineral makeup, but in this case involving metals used in artificial joints). The ABC headline, “More evidence nanoparticles damage DNA”, is worrying enough. And the outcome of the experiment, suggesting that nanoparticle metals can damage even cells they don’t directly touch, only reinforces that anxiety. Given that “DNA damage” is shorthand for “increased cancer risk”, and that nanoparticles are now widespread in the personal products market, what’s not to fear?

Remember these guys?

Remember these guys?

But as I continued to read the article, I noticed something. The descriptions of the experiment and findings mentioned only cells, or layers of cells, or tissues. All that talk of cell membranes but nary a mention of mice or men? It was a big red flag that this was investigational or exploratory research, and not a well-designed study on humans. In other words, the report was a perfect case for applying Tool #1.

So, I spent all of thirty seconds on Google, hoping that another service had picked up the story and furnished better analysis. And I was promptly rewarded! Read More »

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ToolBoxAt the risk of getting fire-bombed by PETA, let me describe Tool #1 this way: test tube goo and lab rats are not people. This seems pretty self-evident, doesn’t it? Yet you’ll be amazed (and infuriated) at how many breathless media reports of fabulous new discoveries don’t bother to explain whether the miracle in question worked for people, rats, or a glob of cells in a petri dish. This is the first and most fundamental tool for evaluating a news report, whether you’re reading about it in the USA Today or in a medical journal, and you should actively seek out this information. (In fairness, if you’re reading a medical or science journal article, it’ll be impossible to miss.)

Amazing Cancer Cure….for Rats

To understand just how important this factor is, consider this: fully 95% of new cancer drugs that looked oh-so-promising in test tubes or in lab rats fail by the clinical trial phase. And while other drugs do a little better (e.g., heart drugs fail at a “mere” 70% by phase III clinical trials), they still fail more than half the time. Read More »

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Last weekend I met an actual, real-life cancer researcher, at an NBCC ProjectLEAD workshop. She was smart, and pretty, and earnest — sort of how you imagine cancer researchers when you’re sitting there with your chemo I.V. running and wondering who dreamed up that wonderful-wretched drug. In the course of conversation, I asked her about Tykerb (generic name: lapatinib), a new “targeted” biologic chemotherapy drug. And when she mentioned that researchers originally had high hopes that it would cause few if any side effects, I snorted.

I think I offended her, for which I’m truly sorry. But if I had a nickel for every fabulous new targeted, biologic, super-earth-shattering drug that was supposed to zero-in on cancer cells with minimal side-effects….well, you know the rest.

Let’s just say that the influence of desperate hope, fervent desire, and even ego is often too much for our poor, unappreciated critical faculties, even if you have MD, PhD, or Uber-Mensa on your name tag. And how much more so for we mere mortals?

All the more reason for a handy tool kit! Read More »

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If anything can be said for breast self-exams, it’s that they inspire some crazy fun videos. But the latest news suggests that, for most of us, that may be all they deliver. If this sounds as crazy to you as it did to me, read on.

Last weekend I attended a two and a half day ProjectLEAD workshop organized by the National Breast Cancer Coalition (NBCC). While my family was arduously touring Washington’s apple country and subjecting themselves to gallons of cider, I was basking in a series of (how to put this?) content-dense lectures on the molecular biology, epidemiology, and politics of breast cancer. (And worshiping the coffee urn…)

Strangely enough, it was the NBCC’s breast self-exam “myth buster” that gave me a mental hernia. Read More »

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