Dreading the colonoscopy

For most people, having a colonoscopy holds only slightly more appeal than, say, having their teeth gouged out one at a time with a rusty chisel.

So I was rather bemused when AmSurg, a for-profit ambulatory surgery company, emailed me a link last week to a new YouTube video, praising the colonoscopy experience as “not that bad.”

Cheesy soul singer and a trio of women in silver miniskirts – what’s not to like? Oh, wait. Colonoscopy.

Few people would argue that the colonoscopy isn’t a valuable screening and diagnostic tool. Indeed, a brand-new study published a couple of weeks ago in the New England Journal of Medicine confirmed this: It concluded that when colonoscopies are performed and precancerous polyps in the colon are detected and removed, the death rate from colorectal cancer is reduced significantly.

In view of this compelling evidence, it’s unfortunate that colonoscopy is lumbered with so much negative baggage.

Many of the people who posted at Medicine.net about their colonoscopy were ambivalent or found the experience downright miserable. “The most painful experience I have ever had and would not go back,” wrote one person. “Painful” and “degrading” was someone else’s assessment. Another commenter found it assaultive and reported waking up from the anesthesia several times during the procedure. “I hate that I will have to get this again eventually, and I will only consent because I want to keep myself as healthy as possible to be around for my kids, but I dread it and wish I didn’t have to,” she concluded.

The medical community acknowledges there are plenty of barriers to discourage people from undergoing a colonoscopy, especially routine screening colonoscopies in those who are otherwise healthy. When a group of Australian researchers reviewed a collection of more than 50 previous studies on patient attitudes toward colonoscopy, they found the laxative bowel preparation was “the most burdensome part” for most people. Anxiety, embarrassment, worries about pain, and fear of finding cancer also were reported as significant issues. The findings were published last month in the Patient Education and Counseling Journal.

Other studies have noted practical concerns as well. One of them is lack of health insurance. Scheduling and logistics also can be a problem; the anesthesia requires not only taking a day off work for the working-age population but also someone to accompany them and drive them home after the procedure.

Add it all up and it’s not particularly surprising that adherence to colonoscopy screening guidelines in the U.S. – recommended for adults between the ages of 50 and 75 – is less than ideal. According to recent figures from the Minnesota division of the American Cancer Society, one in three Minnesotans who are 50 and older have never been screened. Nationally, about four out of 10 adults aren’t up to date on the screening.

Is there a way to improve this? Maybe getting rid of some of the myths surrounding the procedure would help, suggest the folks at Providence Cancer Center of Oregon and Washington. The prep is short-lived, the procedure is done under anesthesia and most people only need to take a couple of days off work, they explain. Their advice: “Get over it, please – and get screened.”

It should be pointed out that colonoscopy does carry some risk of complications. Bleeding and perforation can occur, and some people may become ill from the prep. Serious complications don’t appear to be common, however; one study put the incidence at about 5 per 1,000 procedures.

For what it’s worth, many people who undergo the procedure discover it wasn’t as bad as they thought it would be. Still, it’s not hard to see why the colonoscopy is heartily disliked or why patients would balk at having one. There’s ongoing research on alternative, less invasive screening methods such as virtual colonoscopy, but to date none of them have been shown to be as reliable or effective as the standard colonoscopy. Until we can come up with something better, the dreaded colonoscopy is the best we have.

Mammogram wars, round 2

As if the furor over a new recommendation to give mammograms less often to women in their 40s wasn’t enough, a recommendation also was issued last week by the American College of Obstetricians and Gynecologists calling for less-frequent Pap tests to screen for cervical cancer among women.

The ACOG’s reasoning:

Screening before age 21 should be avoided because women less than 21 years old are at very low risk of cancer. Screening these women may lead to unnecessary and harmful evaluation and treatment.

Cervical cytology screening is recommended every 2 years for women between the ages of 21 years and 29 years. Evidence shows that screening women every year has little benefit over screening every other year.

The public’s response has been remarkably muted. The ACOG’s recommendation is generally similar to the U.S. Preventive Services Task Force’s new recommendation on mammography. Both reviewed the existing data. Both weighed the relative risks and benefits of screening among various age groups, and both concluded the benefits aren’t significant enough to warrant annual screening among younger women – in the case of mammography, among women in their 40s, and in the case of the Pap test, among women younger than 21. (In case you’re wondering, the USPSTF’s position on cervical cancer testing is to screen among women within three years of the onset of sexual activity or age 21, whichever comes first.)

I don’t hear the sound of opponents sharpening their knives over the prospect of fewer Pap tests for younger women. Nor did I hear the pitchforks come rattling out of the shed last year when the USPSTF issued a recommendation against screening for prostate cancer among men older than 75.

When it comes to mammograms and breast cancer, it seems the discussion invariably becomes both personal and political. Indeed, it’s hard to make it impersonal. Breast cancer is the most common type of cancer found among women. Most of us don’t have to look far to find someone we know who has been diagnosed with it – including plenty of women in their 40s.

It doesn’t help that mammography has always been a somewhat imperfect tool, or that the benefits of screening for younger women have persistently inhabited a gray zone. It makes it harder to judge what’s the right thing to do.

Reasonable people can disagree about the USPSTF’s new guidelines. What’s frustrating, and even damaging, is the clamor over this. It has gotten so loud that it’s threatening to drown out rational thought.

For starters, people keep referring to the USPSTF’s new guidelines on mammography and breast self-examination as a new study. It’s not; it’s a review of the existing literature and a judgment call on the basis of data we already have. No one has broken any new ground here. The benefits of mammography among women in their 40s have been studied before and the benefits, weighed against the possibility of unnecessary further testing, overdiagnosis and possible harm, have never been particularly clearcut.

I’ve seen repeated statements that the new guidelines mean we’ll be abandoning mammography for women in their 40s. This is inaccurate. I’ve seen people charge that this was all about the money, when in fact the cost was not part of the USPSTF’s analysis. I’ve even seen people attack the USPSTF’s recommendations for women over age 75 as ageism and tantamount to sentencing older women to death. It’s rubbish; the guidelines merely say the benefits of mammography in this older age group are not clearly established.

And at the risk of sounding like a broken record, I’ll say it again: Anecdotes, even the most personal of personal stories, are not the same thing as evidence. There’s value in anecdotes; they illustrate, they illuminate, they put a human face on what would otherwise be a dry collection of statistics. But they’re not a substitute for good science.

A reader this weekend pointed me towards this transcript of an interview last week on PBS. It’s worth reading for its clear-headed look at the issue. One of the highlights comes from Dr. Diana Pettiti, vice chair of the USPSTF panel:

The task force is not saying there’s a cutoff. It is not recommending against ever screening women in their 40s.

The task force has made a recommendation against routine screening, that is, screening where a postcard comes in the mail and the woman is told that she must be screened every year. Again, we do not disagree at all about the need for women to make an informed choice about being screened at any age.

That conversation should begin in the 40s. And women who want to be screened, after understanding what those benefits might be against the harms or the negatives, should be screened. We don’t disagree. There is no cutoff. There was no magic number. And this was not a cost-effectiveness analysis.

For what it’s worth, I think the U.S. Preventive Services Task Force could use a savvy public relations consultant. The American public is not used to hearing about the down side of screening – any screening, not just mammography. We haven’t yet absorbed the fact that there are limits to its usefulness. It’s a message that has been out there, to some extent, but it doesn’t seem to be reaching very far. Last week’s recommendation probably caught most people by surprise, and they weren’t ready to hear it.

We should have been ready for it, however. At the very least, we should have been receptive and willing to be at least somewhat rational. I mean, come on, folks. This is science. This is epidemiology. Do we want our health care decisions to be based on the available evidence, or do we prefer to simply throw things at the wall and hope some of them stick?

Here in the United States we do an enormous amount of screening. Some of it, I’m sure, is very beneficial. But we do owe it to ourselves to understand the facts and the tradeoffs. And we need to be asking the hard questions and remain open to the answers, even if we don’t like what we’re hearing.

Added: From the New York Times, here’s an in-depth look at how the U.S. Preventive Services Task Force gathered the data and arrived at its recommendation on mammography.

Update, Nov. 24: Is there likely to ever be a final word on the benefits of mammography among women in their 40s? This has been a long-standing controversy, with expert views on both sides of the fence. An article in MedPage Today offers a historical perspective on the issue.

West Central Tribune file photo by Bill Zimmer

The sad story of Jade Goody

Sad; appalling; tragic. It’s hard to find the right words to describe the story of Jade Goody, a British reality TV celebrity who’s dying of cervical cancer at age 27 after ignoring test results because, as she confessed publicly, she was scared.

Most people on this side of the Atlantic have probably never heard of Jade Goody. In Britain, however, she has been tabloid and headline fodder ever since making her debut in 2002 in the reality show "Big Brother." Over the past seven years she has appeared in TV shows, released several exercise DVDs, written her autobiography and even launched a perfume. She’s gained a reputation for being brash and outrageous.

But she’s now more likely to be remembered for how her life is ending: with an aggressive form of cervical cancer. The cancer has spread to her liver, bowel and brain.

With only a few weeks left to live, she’s saying her goodbyes. More than 1 million people watched the televised special last week of her wedding Feb. 22 to boyfriend Jack Tweed.

Worldwide, cancer of the cervix is one of the leading causes of cancer deaths among women. Most of these fatalities occur in developing nations, where screening is less common. Survival rates are relatively high, however, in the United States and in other industrialized nations such as the United Kingdom. About 11,000 new cases occur in the U.S. each year, and about 3,800 women die from it. By comparison, more than 180,000 women in the U.S. are diagnosed with breast cancer each year and nearly 40,500 will die.

The Papanicolaou test, or the Pap smear, has been widely credited with reducing the cervical cancer death rate by detecting abnormal cells early, before they’ve had a chance to progress into full-blown cancer. Between the mid-1950s and the early 1990s, the death rate from cervical cancer fell by 74 percent in the U.S., largely as a result of the introduction of screening.

It would be easy to spin Jade Goody’s sad story as an example of what can happen when a woman doesn’t get screened – except this isn’t the whole story.

For one thing, it appears that Jade did undergo screening. Three times, in fact, during which abnormal cells were found and removed. After the fourth positive Pap screening, apparently, she was simply too frightened to go back for the procedure.

She said as much in an interview last August with Heat magazine: "They had sent a letter to me ages ago, telling that I needed to go in for an operation, but I had been too scared to do anything about it."

Did she have her head in the sand? Maybe not. After all, she’d already had pre-cancerous cells removed from her cervix three previous times, starting at age 16. In the same interview with Heat, she says that the first time "nearly traumatised me for life, it was so painful."

It begs the question: Could the outcome have been different if the cancer had been found sooner, before it had spread?

We’ll never know. But it does raise a lot of questions. Was there adequate followup when she didn’t return for care after her fourth suspicious Pap test? You’d think that after even two abnormal test results, let alone four, her case would have been flagged as high risk and received more intensive monitoring. By some accounts, she had been hospitalized more than once in the past four years for blood loss; were doctors aware of her previous history – and if not, did she think to tell them?

Did it even occur to anyone that she might have been scared?

Possibly Jade herself didn’t understand the importance of following through. One of her statements in the Heat interview – that she thought once the abnormal cells were removed, "they should not come back" – suggests she might not have known or understood she was still at risk.

It’s worth noting that not all cancers are created equal. Cervical cancer can be divided into at least four subtypes – squamous cell and adenocarcinoma, which are the most common, and small cell and neuroendocrine, which are more rare. Furthermore, although the majority of cervical cancers grow slowly, some do not. The relatively high survival rate for this cancer (and some other cancers as well) tends to obscure the fact that for a smaller number of people, it’s still fatal.

Jade Goody’s specific type of cancer hasn’t been publicly disclosed, but given the extent to which it has spread, some observers are speculating that it is more aggressive than most. Although much is still unknown about why cancer cells behave the way they do, a growing body of research suggests that this is often influenced at the molecular level; in other words, it’s coded into the cancer itself. This doesn’t mean that screening and early detection are useless, because for millions of people, they clearly have a benefit. But there are limits to what screening and early detection can accomplish, and increasing the cervical cancer screening rate in Britain, as many advocates have urged, may not be the solution that some think it is.

In the end, we are left with the story of one young woman whose life is ending far too soon. Perhaps saddest of all, the thing that should haunt us the most, is that she may be going to her death believing it’s her fault. To be sure, she made a bad decision not to seek followup care – but there are plenty of other contributing factors to go around, some of which were simply out of her control. And to put the blame on her shoulders alone is a burden no one should have to bear.