A Step Forward

(This is one of several posts I wrote in the last few weeks, but never published, for a variety of reasons.)

In an ideal world (or, it could be said, a well-designed one) there'd be no cancer. Failing that, we'd have perfect treatment: one that destroyed every bit of cancer with no damage at all to normal cells and organs. That is at least imaginable at some point in the future. Even the not-too-impossibly-distant future. Meanwhile, we're stuck with imperfect treatments and we lack the ability accurately to determine who needs how much; who will get along just fine without extensive treatment (and, for that matter, who will succumb even with maximal therapy.) Recently there was news about some progress on that front.

As a surgeon who dealt extensively with breast cancer, I can say one of the most frustrating categories has been the entity known as DCIS, or "ductal-carcinoma-in-situ." It refers to the earliest possible form of breast cancer, wherein the abnormal cells are confined to the inside of the milk-ducts; as such, because it hasn't invaded across any blood or lymph vessels, it presents no danger at all, as long as it stays in that stage. A very rare diagnosis only a few decades ago, it's become increasingly discovered as mammography is more widely done and is of better and better quality. And it's become a therapeutic dilemma: how much treatment -- and what sort -- is necessary for this entity, not dangerous in itself but which has the potential to become so? As DCIS has been more and more frequently dealt with, it's become apparent that not all forms are of equal potential: some women who have it will never develop invasive cancer; others will. And whereas it's still not universally agreed what treatments are indicated for which types of DCIS in what sort of women, it looks like there's progress toward figuring out which women need treatment, and which don't. That's a good thing.

At a national meeting in San Antonio, a recently published paper was reported (by researchers at UCSF, where I learned to be a surgeon) showing that molecular markers have been discovered which can be used to predict when a given woman with DCIS will go on to develop invasive cancer, and which won't. As is the case with early results, confirmation is needed and the testing is not yet widely available. Still, it strikes me as a really significant finding -- one which will lead to much more precise decision-making, conferring confidence on both sides of the equation. Women who need treatment will really need it, and those that don't can safely be excluded. I hope it turns out to be the case; and I wish I'd had such testing available when I saw all those women, all those years.

Surfing for Science

Google has changed healthcare delivery. Once a rarity, it's now common that patients sitting across from their doctors are primed with lots of information, largely downloaded. Medicine is not unique in this, nor is it a bad thing: if you take the time to find out dealer invoice before your automobile purchase, surely you ought to inform yourself about your gallbladder. A good doctor considers it an essential part of the relationship fully to inform a patient, whatever the subject. Eschewing the cookbook pre-packaged booklets available for most surgical problems, I wrote my own, developed a few handy visual aids, and spent as much time as it took to educate those entrusting to me their care. In general, I liked it when they came to me already well-informed. Well-informed. It won't come as a surprise, however, to learn that many had filled their heads with crap.

The internet, while a most remarkable source of information on every imaginable subject (and some I could never have imagined), is also an equal-opportunity fount of bullshit. Debunkery is not my mission here: others (notably Orac, who regularly and brilliantly [and respectfully!] skewers medical mendacity) do it much better than I ever could. My point is that as much as I want to inform and educate and answer all questions, it's more than irritating to have to admire a jar of stool proudly produced to show the "dissolved gallstones" resulting from a snake-oil recipe googled and then gobbled. Knowledge, as they say, is power. Misinformation kills. Failing that, it annoys.

I still haven't gotten around to posting on the subject of the gallbladder, the surgeon's best friend. I will, I will. In the interim, I can report that whereas taking lemon juice and vegetable oil, along with some herbal flavorings, can produce some sort of curdled mess that becomes indigestible enough to burble out the backside in lovely little lumps (say it out loud: it's fun), it does not a damn thing to stones in the gallbladder. I guess there's no real solution to the problem of disreputable downloads: at least they're asking me about it, as opposed to going off on their own. On the other hand, I'm not seeing the ones I'm not seeing.

In that most non-existent "best of all worlds," doctors would be entirely worthy of trust, and trusted. How nice it would be if medicine had all the answers, I knew them, and perfectly shared them. How excellent if people could happily, confidently, and realistically leave everything to their doctors, could feel they needn't arm themselves with data before the consultation. They can't, of course; and shouldn't. You'll never hear me argue that doctors have god-like omniscience, or that patients should just shut up and take what we dish out. I'm well aware of doctors who are poor communicators, and/or who (amazingly enough, in this modern world) still take a very condescending view of patients and their need for information. And yet, one wonders: is there a limit, an end-point? When does patient advocacy become an impediment to the necessary rapport between doctor and patient? How much information is too damn much? Unsurprisingly, I don't have the answers. I do, of course, have opinions. Feelings. That's the kind of guy I am.

At the extreme, I've had patients bring "advocates" to the office. Steely-jawed, humorless, with an "I've got your number, buster" look and an ostentatious finality, they've produced tape-recorders and planted them on my desk. "Now just try to bullshit us, you self-satisfied doctor, you. You establishment dick. We know about guys like you, and you're not getting away with it..." Or so it seemed. I'm a garrulous person, but that's sort of a show-stopper. I've also seen the glazed look of information overload, at a time when it's least welcome. Breast cancer is the prime paradigm, applicable as an example in both of the preceding situations.

"If your surgeon recommends mastectomy," it's been said, "find another surgeon." "No woman ever again needs to lose her breast," has been written and read, widely. And it's absolutely untrue. But tell the woman who has extensive high-grade DCIS that she ought to have mastectomy, and you might see her get up and leave. (Not really, in my experience. But it takes a long time to explain why what she'd heard is, in this fairly uncommon situation, wrong. Having watched her initially recoil at the information.) Conversely, try to enumerate all the options of primary treatment in the usual circumstances; explain the role of radiation and chemotherapy, and the types of each; the kinds of lymph node procedures, the different forms of mastectomy. List all the options for reconstruction, starting with immediate versus delayed, and get into the operative choices once that decision is made. As you watch the mind sizzle, you want nothing more than to say "here's what I think you should do, and here's why." In fact, it's not rare to be asked to do just that. Choice, it turns out, and abundant information can be -- for some people -- more than they want to handle.

I've always thought it a cop-out for a doctor to give a patient a list of options and then mutely leave the decision to her/him. Part of our job, I think, is to say what we think should happen, and to explain exactly why, yet to do it in such a way, when there are several options, that doesn't close the door to patient preference. Instinct sometimes tells me that this person or that needs more, or less, information. This person wants direction; that one doesn't. It's a subtle and somewhat mystifying thing: how different the relationship can be. But this part isn't mysterious: when there's a tape-recorder whirring on my desk, I'm highly inclined to do the list thing, and say, "let me know if you need more information, or if there are other ways I can help you with your decision.... Next."


Addendum/Update: I suppose I should clarify. This isn't really about the wisdom recording your doctor visit. I understand the desire to do so in order to remember what was said, and when I've had patients ask if it was ok, I always said yes. Likely I'd also mention I'd be giving them self-written booklets that would serve the purpose as well. In the cases I mentioned above, it was an in-your-face I-don't-trust-a-thing-you're-about-to-say encounter, initiated not by the patient but by a gun-slinging sidekick. Different animal.