Estrogen, Science, and Uncertainty

Debbie says:

(If I had a nickel for everything I’ve wanted to post about in the last ten days, I’d probably have more than a dollar. But at least here I am.)

The problem with the estrogen question in the year 2010 is that you set out one day to ask it in what sounds like a straightforward way — Yes or no? Do I or do I not go on sticking these patches on my back? Is hormone replacement as dangerous in the long term as people say it is? — and before long, warring medical articles are piling up, researchers are raising their voices and gesticulating excitedly and eventually you’re in Los Angeles staring at a fluorescent rodent brain in the dark.

Okay, that’s not fair. I’m dropping you into the middle of Cynthia Gorney’s article, “The Estrogen Dilemma,” which is about two weeks old but doesn’t, for whatever reason, seem to have been widely discussed in the blogosphere. It does, in fact, start with the author and Roberta Diaz Brinton, identified in the article as a “brain scientist” …

staring at a wall of live mitochondria from the brain of a rat. Mitochondria are cellular energy generators of unfathomably tiny size, but these are vivid and big because they were hit with dye in a petri dish and enlarged for projection purposes. They’re winking and zooming, like shooting stars. “Oh, my God,” Brinton said. “Look at that one. I love these. I love shooting mitochondria.”

Basically, Gorney is postulating a connection between loss of estrogen and Alzheimer’s disease (and there may be a better way to get me to reconsider my own personal decision not to take estrogen, but I don’t offhand know what it would be). And the question is fascinating. But that’s not why I wanted to write about this article.

Gorney is doing something here that almost no one ever does: she is putting her finger down right on the center of why approaching scientific questions is hard, and confusing, and makes even the most intellectual and scientifically minded of us wish for straightforwardness, for simplicity, for unambiguous answers. She isn’t just writing about estrogen and HRT (though she wrote an extremely informative, detailed, and thoughtful article about that), she’s writing about how we make theoretically scientific decisions “in the modern era, what with litigation-jumpy physicians, the researchers’ candid “We just don’t know” and the bottomless learn-it-yourself maw of the Internet”

A friend of mine, facing a rather different medical dilemma, said to me last week, “I can’t figure this out unless I can clone myself and try both approaches on two different clones and see what happens.” I’ve similarly heard both doctors and patients talk about the difficulty of titrating drug doses: the only way we could really know how much of a given drug a patient needs would be to know everything about that patient’s metabolism and everything about the drug. And no one knows everything about anything. Here’s Gorney again:

What medicine doesn’t know about the chemistry of mood, including clinical depression, dwarfs what medicine doesn’t know about hormones. It would be handy for science if Berry and I could have made our heads available for dissection at certain points in recent years; as it is, we’re able to answer as many elaborations on “I feel bad” or “I feel good” as researchers might wish to throw at us, but they still have no way of pinning down where we belong on the scale of menopausal distress, or what exactly we’re doing there. We could be extra-high-volume versions of the women who are having an ordinary rough time of it, like Roberta Brinton — the women who hot-flash and can’t sleep and cast about for vocabulary with which to describe feeling, as Brinton puts it, “just off.” Or we could belong to some subcategory of anomalies, women with a wired-in susceptibility to depression — gene pools, childhoods, whatever — that was fired up by abrupt hormonal change.

I’m writing this in a hurry (who isn’t in a hurry?) and I can’t say that I have given all of Gorney’s article the attention it deserves. What’s more, if the “timing hypothesis” she talks about (the theory that women in their 50s may benefit from HRT and women in their 60s may not), I should revisit my decision pretty damned soon. I’m smart, well-educated, and reasonably scientifically and medically minded. I’ve had several jobs in my life that rely on being able to read, digest, and reframe scientific material. I’m a good quick reader and a facile thinker. So if the amount of information in this article, which Gorney is completely clear only scratches the surface of the work being done, is more than I can take in right now, how does a smart, averagely-educated person without a scientific background cope. Especially if this person is in an extreme emotional state for any of the endless reasons that a person might be in an extreme emotional state?

This is how the oversimplified answers, the cookie-cutter solutions, the yes/no checklists (not like JoAnne Manson’s checklist, which Gorney discusses, requiring 82 pages of reading) become so tempting.

I have my own process for making these decisions. I read a little (but I make a point of not reading too much, or too deeply). I talk to a few informed people whom I trust. And I don’t revisit once I decide, unless I get what feels like genuine new information. This article feels like genuine new information to me, and it’s my start for reading a little, picking a few people to talk to, thinking a little. You have a different process, which may bring us to the same decision, or not.

As I started to write a concluding paragraph, I wrote, “If I can keep my brain longer by putting a patch on my back, I will.” See? That’s exactly the point where the problem arises. If I say that, I’m avoiding the real point, because the truth is “If I believe that putting a patch on my back raises the odds of keeping my brain longer, and I understand the potential risks of that patch, I’ll do it.” The second sentence is a lot less comforting than the first.

Life is about living with uncertainty, of learning to discount the endless barrage of certain-sounding pronouncements that come from our media, and from the people we know. It’s about comprehending the risk and knowing that we can’t know where we’ll fall on any given bell curve. We need doctors, and lawyers, and journalists, and scientists to be willing to say “I don’t know,” and we also need to be able to say it ourselves, and come to terms with the risk of not knowing.

I’d rather know. But I can’t know, so I do the best I can with the facts and feelings available to me.