breast cancer

The Problems Inherent in Testing Large Populations With Even Relatively-Reliable Methods

Summary: An example of the political, law-enforcement, and practical problems of detecting vs. dealing with potential terrorists supports Echidne’s analysis of the problem with breast-cancer detection recommendations.

Matthew Yglesias discusses the difference between “common sense” anecdotal evidence and statistical evidence.

Suppose I invent a magical device that can be pointed at a Muslim and say with 90% accuracy whether or not he’s an al-Qaeda operative. Well, if I start waving it around and it starts beeping on one guy, what should we conclude about him? A terrifyingly large number of people are going to say “there’s a ninety percent chance he’s with al-Qaeda! Let’s panic!” In fact, that’s not the case. There are a billion Muslims in the world. A test with 90 percent accuracy is going to mistakenly classify about 100 million of them as al-Qaeda operatives. And al-Qaeda actually has fewer than 10,000 people working for it. I’m going to get something like 10,000 false positives for every actual terrorist I find.

Meanwhile, applying the test to people is going to have severe consequences. The public doesn’t understand this correctly and is going to be put into a wholly unwarranted state of panic about the prevalence of terrorists. People will, of course, demand that those flagged by my machine be subjected to extra-heightened scrutiny. It’s easy to imagine lots of innocent people being mistakenly killed or subjected to discrimination or shunning. And that sense of beseigement and unfair treatment would ultimately heighten tensions between the world’s Muslims and the West, while wasting massive quantities of law enforcement resources chasing basically worthless leads.

Read the quote in context here.

It seems odd to call a discussion of terrorism and racial profiling “non-controversial,” and perhaps even more odd for me to quote so extensively about something seemingly so remote from anything having to do with my main topics of relationships, sex, and gender.

Yet I bring it up to support a post by Echidne of the Snakes defending the statistics and methodology behind the new mammogram restrictions.

It was seriously principled, and courageous, for her to go out on a limb like that. Like a lot of problems in mitigation it’s easy to point to someone who benefitted from the status quo, but harder to identify those who suffered from it.

I think Yglesias’ post explaining the cost of more testing at certain ages (even if the tests were very accurate — which they aren’t in either Yglesias’ nor Echidne’s cases) would tend to overwhelm the system, and individuals, with false positives on the one hand, and still-treatable cases on the other.

Without intending any gender equivalencies, at all, it’s instructive to note that a similar situation arose in prostate cancer detection 10 or 15 years ago: PSA tests brought the price of detection down and the early detection way, way up. But, as you note, detection isn’t the same thing as treatment. At all. In fact detection isn’t even the same thing as understanding the disease!

For better or worse, because the imbalance between detection on the one hand and both understanding and treatment on the other hand was so lopsided it became a big problem for medical ethics: first, it turns out overwhelming numbers of men over 50 or so have detectable early prostate cancer. But for most it’s so slow to grow they die of old age before they can die of the cancer. For most but not all. Enough die, and die fairly horribly, to make treatment a consideration. But the treatments (burning off, cutting off, or poisoning) are generally so debilitating and expensive they shouldn’t be undertaken unless you’re sure it’s the bad kind. Which makes it a shame that researchers then, and now, still can’t tell whether an early cancer will go bad.

The line between the risks and benefits of breast-cancer testing are much harder to draw than prostate-cancer testing was. And so we’re stuck (or I should say “stuck”) with statistical analysis. Which is why it’s really nice to have a committed, ethical, and highly-interested statistician explain these particular findings for us. And with breast cancer the benefits are close enough to the costs (barring further progress in the development of treatment anyway) that it’s really hard to say what the right thing to do might be. And so we’re likely to run into really big shifts in the conclusions.

On a final note I especially appreciated Echidne’s explanation of not only the cost vs. benefit of testing, but how the cost incurred for marginally-valuable testing might be diverting funding from research into treatment or prevention. (emphasis mine.)

Screening is not treatment. To do it at all is based on the hope that early detection raises the odds of survival. This has been shown to be true for cervical cancer and the pap test and also for colon cancer screenings. But the most recent evidence suggests that breast cancer screening is less effective than previously thought. As I mentioned in an earlier post, researchers now suspect that mammograms capture a lot of tumors which might either disappear on their own or never grow much, while missing the very aggressive tumors which develop very rapidly. It is the latter types which are reflected in the mortality statistics

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The choice to pay for screening (by both individuals and the society) is ultimately a value judgment. But resources are not infinite. If money is spent (by both individuals and the society) in one type of screening, it is not available for other types of screening or for other types of prevention or treatment.

It’s hard when answers aren’t cut and dried, and even harder when the ranges are so close you can get these big shifts in recommendations. And when it’s a controversial subject it’s even harder. Cool that she was willing to dig into it.

Update: See also Amanda Marcotte’s take, with another allusion to prostate cancer (it’s being downscaled too) and more backup links.

Breast Cancer as Loss of Sensation

Nice link and analysis of a Salon.com article on gendered advice to cancer-surgery patients from of Historiann

Here’s an interesting article in Salon by Ann Bauer, ”Sex Without Nipples,” about the differential between counseling and treatment offered to cancer patients about sexual issues in men’s versus women’s cancer surgeries.  Sadly, I’m not surprised–as we’ve seen before, somehow it’s all about teh menz and their feelings and their sexual satisfaction, no matter whose body has the cancer.  Whereas prostate cancer patients are counseled heavily about the sexual side-effects of their cancer treatments, women who opt for mastectomies are never advised about the possible consequences to their sex lives.

Read the quote in context here.

A lot of you have probably seen the Salon.com article so check out Historiann’s article instead.

For myself I have to say this is the first time I’ve seen anyone talk about breasts in terms of the woman’s loss of sensation instead of all the usual punditry about social attitudes, body-image, and “femininity.” Nipples aren’t the be-all and end-all of women’s erogenous zones porn and popular culture makes them out to be — minus the hype, and the attention, and consequently the practice I have a suspicion that the average man’s nipples are comparably sensitive to women’s. But since (again with a little practice) that ain’t nothing to sneeze at…

Information About What You'll be Facing is As Important As Information About "The Cure"

Jill, formerly Twisty, of I Blame The Patriarchy, herself a double-mastectomy survivor, reflects on an intrinsic bias towards treatment over prevention for many types of illness — breast cancer in her case.

Specifically Jill was responding to the lack of online information, particularly photographic information, about mastectomy and aftercare compared to, say, enough images of pink ribbons and pink soda-bottle packaging to repave Los Angeles.

As Samantha King writes in the enlightening Pink Ribbons, Inc.:

[Women] are discouraged from questioning the underlying structures and guiding assumptions of the cancer-industrial complex. The culture of breast cancer survivorship does not, in other words, embrace patient-empowerment as a way to mobilize critical engagement with biomedical research, anger at governmental inactionk or resistance to social discrimination and inequality, even if its history is bound up with attempts to do just this.”

People can’t find out how really fucking gross treatment is, because if they did they might start thinking, hey, maybe preventing breast cancer — as opposed to waiting for women to get sick and then slamming them with a series of debilitating, barbaric procedures — is a good idea.

She said it here.

One needn’t agree that there’s a purposeful conspiracy to get the point that there’s not as much emphasis placed on finding ways to prevent common illnesses like breast cancer as there is for “the cure” after they’re diagnosed. Nor does one need to think the emphasis on treatment boils down to profit motive to agree more emphasis could be put on prevention.

Part of the problem, of course, at least in America, is that we’re great optimists and (Katrina notwithstanding) pretty good at responding to immediate catastrophe. And so we have a hard time in general with anticipation: “you won’t get cancer if you…” when you don’t have it (yet) is just way harder to gear up for compared to how we’re able to marshall ourselves in the face of “you have cancer…” (What’s that line “nothing so concentrates the mind as the prospect of being hanged in the morning?)

But I digress. I just want to echo Jill’s point that when one is facing a crisis like prospective surgery and chemotherapy (of any sort) it would be awfully nice if there was as much information available about what to expect before and during the process as well as there is for after.

Oh, one last thing: this, I think, is one of those areas where blogging really shines. It’s sometimes heartwrenching to read someone’s personal experience with surgery, recovery, chemo, remission, reoccurrence. But it’s very good to know. Just as its good to know what to expect before our first kiss, our first orgasm, our first time driving, our first child, or job, and so on, it’s good to know what to expect when we fall ill. Again, that’s where people who blog have shined.

Burying the Lede: Breastfeeding Might Benefit the Mother

Ann Bartow of Feminist Law Professors passes long a tidbit that was pulled out last week in the blogosphere but buried in the original NYT article. The upshot, Bartow points out, is women who breastfeed have…

...a 59 percent lower risk for these women with an immediate relative with breast cancer! Read the rest of the article for yourself here.  I helpfully provide the link because the story is difficult to find.  It’s not on the front page of the paper nor on the front page of the Science section.  It’s not even summarized on the front page of the online section of the Science section (only a link), apparently bumped by other, more newsworthy articles.  See (here) for yourself.

Interesting the placement of this article, considering how much front page attention the media has given to the benefits of breastfeeding for the baby (and all the guilt-tripping of those women who don’t).  The media message seems to be:   You should breastfeed if you’re a good mom (although we’re not going to make it any easier for you by actually giving you a place to breastfeed at work, for example…) but not because it’s good for mom.

She said it here.

In other nutrition-related news there’s much kerfuffling about recent studies showing that organic food isn’t any more nutritious to consumers. With proponents arguing that the studies not being rigorous enough, and skeptics noting that if the studies have to be rigorous to demonstrate benefit the benefits can’t be large. And yet, relevant to Bartow’s post, one very clear benefit of organic food production is it minimizes farmer, farmworker, and food-handler’s exposure to toxic materials in quantities that don’t require rigorous studies to measure the effects of.

In both cases society obsesses over sometimes very small benefits that might accrue to food consumers, while remaining peculiarly oblivious to even very large benefits to either maternal or agricultural food producers.

Update: But doh! See Sungold of Kittywampus for a take on a) just how small a subset fall into the category of beneficiaries and b) that women have been told about previous stories about cancer reduction in an attempt to encourage breastfeeding.

And darn it all! When I first composed this post I had a section about how news like this should be just one more data point when making decisions to nurse one’s children, not a deciding factor in itself. (See also similar reasoning about alleged or real benefits of other activities.)

And in retrospect I don’t think I made clear that the point for me (and, I think, Ann Bartow) isn’t so much that breastfeeding is some great breakthrough for some women as the fact that potential life or health benefits of any sort to mothers as benefits to mothers are tend to be stinted compared to the heaps of attention paid to potential benefits to their children.

Deconstructing Reconstruction

Sungold of Kittywampus has an interesting post up about reconstructive surgery after breast cancer vs. prostate cancer. I’d like to excerpt the whole thing but I’ll pull out the relevant bits as best I can.

According to Nate Jenkins at the AP, the state of Nebraska has decided that there’s no need to help men who are struggling with erectile dysfunction. It already stopped Medicaid payments for Viagra and related drugs when the federal government did the same in 2006. Now it’s excluding penile implants from Medicaid coverage as well.

From patient accounts that I’ve read, the erection resulting from the implant feels natural and pleasurable to both partners. Most of the men who have an implant wonder why they didn’t get the surgery sooner.

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[A]part from the cringe factor, this is what they’re up against:

State Medicaid director Vivianne Chaumont said the change is consistent with a federal rule, approved in 2006, that barred the federal government from spending Medicaid dollars on erectile dysfunction drugs including Viagra. Nebraska followed suit a few months later and changed its rules to keep state Medicaid money from being spent on the drugs.

The federal government will still help pay for penile implants in states that choose to continue covering the procedure under their Medicaid plans.

Medicaid is meant to pay for the medical necessities of needy people and “sex is not medically necessary,” she said.

Do I even need to enumerate what’s wrong with this? ...

The ruling is also blatantly sexist. The state Medicaid program covers breast reconstruction, as most private insurers are required to do in accordance with federal law. Where’s the difference? Again, from the AP:

Chaumont, who moved to Nebraska about a year ago to take her current position, said she didn’t know why the decision was made to cover breast reconstruction under Nebraska Medicaid but added that it didn’t strike her as unreasonable.

“I don’t think breast cancer has anything to do with sexual dysfunction or sexual impotence,” she said.

I’m always uncomfortable when breast cancer and prostate cancer get pitted against each other. Both deserve adequate – no, generous – funding. It should never be a zero-sum game. And in this case, there’s no conceivable reason to cover one but not the other. Breast cancer has effective advocates. Prostate cancer remains largely in the shadows. That’s the only real difference.
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At bottom, Chaumont is enforcing the idea that sex is optional and probably downright icky or evil. That sex is not for people who are aging or ill (even if an increasing number of prostate cancer patients are in their 40s and 50s). That sex is not a part of mental health. She doesn’t give a shit that their partners suffer nearly as much from the loss of marital “delight.” But what gave her the right to impose her own anti-sex views on Nebraskans who’ve had the double bad luck to be both poor and seriously ill?

What’s next? Will the state of Nebraska refuse to subsidize walkers or canes on the theory that walking is not a medical necessity? You can stay alive without walking, chewing, seeing, or fucking. And you can survive for decades without using your higher brain functions, including logic and empathy, as Chaumont’s decision proves. It seems that even thinking is not a medical necessity.

Read the quote in context here.

I’ve been interested in medical side effects that inhibit libido or sexual function, especially in men, for quite a while. Our narratives of men as the “sex class” are so pronounced that, as Sungold says, men who suffer such calamities often vanish from sight. (By some accounts the Bible forbids them going to church!) There’s even a pretty strong tradition, thoroughly embedded in the “no-sex” class by the way, that Viagra and penile implants are of interest only to men and that their partners have no, zero, none investment in their partner’s sexual functionality. And as I’ve mentioned elsewhere several times recently the issues is further complicated by sexist/ageist bias: menopausal women who are still interested in sex have been standing objects of derisive humor for generations.

Anyway, great post by Sungold about a topic we really should be having a lot more conversations about.

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