Katie's Crusade

By Christine Gorman

It's been just two years since Katie Couric's husband Jay Monahan died of colon cancer at age 42. Looking back, the popular co-host of NBC's Today show recalls that the only clue they had that anything might be wrong was that Monahan, who worked as a TV legal analyst, often felt tired and achy. That wasn't too surprising. He'd been busy covering O.J. Simpson's civil trial for MSNBC, shuttling back and forth between California and the home he shared in New York City with Katie and their two young daughters. Says Couric: "We thought it would get better when his schedule improved."

It didn't. After the trial ended in January 1997, Monahan's fatigue persisted. A few months later, doubled over with abdominal pain, he went to a doctor. A series of X rays and other scans revealed that Monahan was suffering from advanced colon cancer--so advanced that the disease had spread to his liver. He died Jan. 24, 1998, two weeks after his 42nd birthday.

Like most Americans, Couric and Monahan had never thought much about colon cancer. Why should they? Monahan was young and healthy and had never smoked. There was no history of colon cancer in his family. Until her husband became sick, Couric didn't realize how common cancers of the large intestine, which includes the colon and the rectum, are. Or how deadly. Or how preventable.

Colorectal cancer strikes 130,000 men and women each year in the U.S., according to the American Cancer Society. Although it's more common after the age of 50, younger people are also affected. Over the next 12 months, more than 55,000 Americans--a quarter of them under 50--will die of the disease, making it the second leading cause of death due to cancer, after lung cancer.

It doesn't have to be this way. "This is a disease almost no one needs to die from," says Carolyn Aldige, president of the Cancer Research Foundation of America. Provided it's caught in its earliest, most treatable stages, colorectal cancer is curable more than 90% of the time. If more people underwent routine screening to find small tumors, experts estimate, the death toll would drop 50% to 75%, saving around 30,000 to 40,000 lives a year.

To save those lives, the U.S. Congress, prompted by more than 30 health groups, has designated March as Colorectal Cancer Awareness Month. There will be surveys and special websites and public-service announcements spreading the good news--that early detection works, that treatment is improving and that what you eat and how you exercise can dramatically reduce your chances of developing the disease.

For her part, Couric, starting March 6, will be host of a week-long series about the disease on the Today show. In what must be a television first, she will broadcast footage of her own intestine, taken during a recent colon exam. (She's fine.) Couric has also joined longtime friend and cancer activist Lilly Tartikoff (whose husband Brandon died of Hodgkin's disease in 1997) and Hollywood fund raiser Lisa Paulsen (who specializes in connecting celebrities to worthy causes; see following story) to finance a public-education campaign and urge more aggressive research into colon cancer.

Before you start thinking, "Just what we need, another gimmicky disease of the month," stop to consider how much good such a campaign can do. There are probably more myths and misconceptions about colon cancer than about any other killer disease. Young people think only old people get it. Women think only men get it. African Americans think only whites get it. (In fact, American blacks are at greater risk than whites, and the disease strikes men and women, young and old.)

And the rest of us--mired in inhibitions that date back to our toilet training--don't even want to think about it. Potty talk is for two-year-olds, not grownups. The idea of a full-scale colon exam (You're going to stick that thing where?) scares most Americans away from the very screening test that could save their life. Is it any wonder that 99% of Americans, when asked to name a potentially fatal disease, don't think of colorectal cancer (according to a survey released last week on Capitol Hill)?

That sort of reticence proved deadly for the late Charles Schulz, beloved creator of Peanuts, who resisted being tested despite the fact that his mother, two uncles and an aunt died of colon cancer. By the time physicians discovered his tumor last fall, it had spread to his stomach lining, and there was little they could do.

Even when our own doctor tells us to get our colon checked, we don't always listen. A year and a half ago, Florence Seguin, 73, of Williamsburg, Va., shrugged off her physician's recommendation that she undergo a colonoscopy, a procedure in which a doctor inserts a flexible lighted tube into the colon to look for abnormal growths. A former nun and the adoptive mother of a 13-year-old boy, Seguin knew that one of her brothers had died of colon cancer, but it wasn't until she saw an article about Couric and Monahan that she stopped procrastinating. Fortunately, the tumor that her doctors found was still small enough to be surgically removed. Says Seguin: "I don't know how many more times I would have canceled or postponed the colonoscopy if I hadn't read that article."

No one expects stories like Seguin's to make up for the loss Couric has experienced, but they do bring her a measure of satisfaction. "It's difficult every day without Jay," Couric says. "But it's not difficult to do this, because I feel that if I can save even one family the heartbreak that mine went through, it's worth it."

If you're serious about protecting yourself and your loved ones against colorectal cancer, it will help to know something about the disease. Nearly all colon cancers start as polyps, tiny grapelike projections that sprout on the inside of the large intestine. Most of the time these growths are benign, but occasionally a collection of cells--through a series of genetic mishaps--will get bigger and bigger until it turns into a tumor. About 25% of these malignant growths are triggered by a genetic predisposition that has been present since birth. The rest of the time, normal genes become damaged with age or exposure to the toxic brew of wastes that collect in the colon.

Researchers have identified the genes responsible for at least two types of hereditary colon cancer--dubbed FAP and HNPCC --that trigger malignant growths in folks in their 30s and 40s. But it can be tough to tell who has the genes, since they are often camouflaged by normal ones. Last month Dr. Bert Vogelstein and his colleagues at Johns Hopkins Medical School in Baltimore, Md., reported in the journal Nature that they have figured out how to unmask the defective genes. Meanwhile, researchers at Exact Laboratories in Maynard, Mass., have developed a simple stool test that will alert your doctor to any dangerous genetic changes in your colon. The test costs $250 and may become more widely available by the end of the year.

What if you could prevent the polyps from forming in the first place? In 1991 Michael Thun, an epidemiologist with the American Cancer Society, made an intriguing observation: people who regularly take aspirin are less likely to develop colorectal cancer. It turns out that aspirin blocks the production of an enzyme, called COX-2, that is found in 90% of all tumors and half of the polyps in the large intestine. Apparently most of these abnormal tissues need COX-2 to grow. Stop the production of the enzyme, and you might be able to prevent the cancer from getting larger--or from forming in the first place.

At least that's the idea. Since COX-2 is produced by normal cells as well, doctors may run into trouble if they try to shut down its production entirely. Also, taking aspirin on a regular basis can lead to other problems, like internal bleeding. Still, researchers are sufficiently intrigued by the COX-2 connection that they're trying to determine whether a new generation of seemingly safer drugs, called COX-2 inhibitors, can reduce the incidence of cancer among folks with the FAP or HNPCC genes. "It's a very exciting area of research," says Thun. "But it's too early for clinical application."

Surgery is still the front line of defense against colon cancer, and it is highly effective against the smaller tumors. (Better techniques mean that less than 2% of all colorectal-cancer patients now undergo a colostomy, in which the large intestine is rerouted to a hole in the abdomen and emptied into a bag. That's down from as many as 20% two decades ago.) Larger or more aggressive tumors usually require chemotherapy, which can be a problem. Whereas breast cancer, for example, often succumbs to any of eight to 10 powerful drugs, there has until recently been only one drug strong enough to battle colon cancer--a drug that was developed in the 1950s called 5-fluorouracil, or 5-FU.

The problem with having just one chemotherapy drug is that it limits your options. The cells that line the intestine are so used to acting as a garbage dump, explains Dr. Dennis Slamon of UCLA, that the ones "that eventually become malignant are less susceptible to chemotherapy."

But there's good news on the chemotherapy front. In 1998 the Food and Drug Administration approved Camptosar (also called CPT-11) for the treatment of advanced stages of colon cancer, and using Camptosar and 5-FU in combination seems to be most effective. It's a potent cocktail that not all patients can tolerate, but it has, in some small studies, doubled short-term survival rates.

Looking to the future, researchers would like to take advantage of some of Mother Nature's own ideas to design new chemotherapy drugs. Scientists at Vion Pharmaceuticals of New Haven, Conn., are interested in co-opting a group of Salmonella bacteria that normally attack the intestines and cause dysentery. Salmonella, it happens, also happily infect all kinds of tumors, including colon cancer. By loading genetically crippled salmonella with one of the body's own cancer-fighting chemicals (a molecule called tumor necrosis factor), researchers at Vion hope to destroy or at least shrink a wide variety of cancers. Safety studies in humans are planned for later this year.

Your best bet to beat colon cancer today is to catch it early--and that means regular screening. It would help if there were just one screening test and some simple rules to follow about when to get it done, but that's not the case. So pay attention to the following guidelines:

First, a warning. If you experience any symptoms--especially bleeding from the rectum, unusual constipation, abdominal cramping or a narrowing of the feces--talk to your doctor immediately about taking a peek inside your colon.

All other things being equal, you should start screening by age 50. (Some doctors lean toward 40, but more on that later.) If you have a family history of the disease, particularly among your siblings or parents, you may need to start in your 30s or 40s. A good rule of thumb is to begin getting tested 10 years before the youngest age at which colon cancer was diagnosed in any member of your family. "Don't wait for an invitation," says Dr. Bernard Levin of M.D. Anderson Cancer Center in Houston, Texas. "Tell your doctor, I want to get screened."

It's a good idea to keep track of other diseases that have affected your family. There's growing evidence that uterine and ovarian cancer may be genetically related to colon cancer. So if your Aunt Mary died of uterine cancer, don't assume you're in the clear if you've had a hysterectomy or if you're a man. You could be at greater risk of colon cancer as well. The same holds true if you suffer from inflammatory conditions of the intestines, like Crohn's disease or ulcerative colitis.

That's the "when" part of the equation. Now for what you should do. There are three different ways to get screened for colon cancer. Which method you choose depends a lot on your wallet--and the level of risk you're willing to live with.

If you go for the least expensive method--because it's the one most often covered by insurance--make sure you get both parts: a stool test, which looks for the presence of hidden blood, and a flexible sigmoidoscopy, in which a lighted tube is inserted into the lower third of the colon. The stool test should be repeated annually, since only 1 out of 3 tumors bleeds enough to be picked up by the test and then usually only after it's grown in size. The "flex sig" should be performed every five years, provided there's no change in symptoms or family history. Cost over five years: $100 to $200.

If you're not satisfied with checking out only part of your colon, you have two other options. Both require going on a liquid diet for 24 hours before the procedure and involve flushing the colon ahead of time. But they give more of the big picture.

In a double-contrast barium enema, a technician coats the inside of the intestine with the metallic dye and pumps the colon full of air. Then an X ray of the large intestine is taken, allowing doctors to visualize the outline of most abnormal growths. Provided the colon is clear, a barium enema should be repeated every five to 10 years. Cost: $200 to $400.

The other option is a colonoscopy, the procedure Couric underwent for the Today show. At $1,000 or more a pop, it's both expensive and invasive. Under normal circumstances you have to do it only once a decade.

"The prep is a pain," Couric admits. The colonoscopy itself is conducted under a mild sedative. "I was chatting the whole time," Couric recalls, "bossing my camera crew around." There is a risk, albeit a small one, that the device can slip and punch a hole in the intestinal wall. Yet a colonoscopy offers a distinct advantage in that the doctor can remove any small precancerous polyps as soon as they are found, making it the only screening test that can prevent cancer, not just detect it.

That is why some doctors and quite a few activists are lobbying to make colonoscopy the test of choice. They point to small studies of people with a genetic predisposition to colon cancer that show that snipping out polyps on a regular basis decreases chances of developing the disease. Dr. Sidney Winawer of Memorial Sloan-Kettering Cancer Center in New York City is directing a larger study to see if that holds true for the general population.

Until then you could be stuck in a classic medical Catch-22. Most insurance companies won't pay for a colonoscopy unless you have a family history or symptoms. But if you already have symptoms, any tumors the test uncovers are likely to be advanced. The insurance industry insists it is just following procedures. "There isn't enough evidence [on whether colonoscopy screening saves lives] to recommend for or against it," says Dr. Charles Cutler, chief medical officer of the American Association of Health Plans. For years Senator Edward Kennedy of Massachusetts has pushed a bill that would mandate reimbursement for all screening exams. It is still languishing in Congress.

Executives at pharmaceutical giant Eli Lilly aren't waiting for government action. They offer free colonoscopies to all their employees starting at age 40. "The guidelines typically suggest screening at age 50, because that's when the incidence of colon cancer becomes statistically significant," says Dr. Gregory Larkin, director of corporate health services for Lilly. But since it takes precancerous polyps five to eight years to develop, he notes, why wait a decade to start removing them?

Still not ready to sign up for a colon exam? Researchers are trying to perfect the so-called virtual colonoscopy, which doesn't require threading any medical instruments into the colon. Instead, doctors rely on cat-scan imaging to create a computer-generated 3-D picture of the inside of the intestine. It's still not clear, however, how accurate the new technology is. So don't put off getting the tests that are available today in hopes of taking a less invasive one later.

While you're at it, try making a few changes in your lifestyle. Start by eating at least five servings of fruits and vegetables a day (a serving consists of a medium-size banana, apple or orange, half a cup of solid vegetables or a full cup of lettuce). There's evidence that natural compounds found in fruits and vegetables can help protect against colon cancer. Besides, fruits and vegetables lower your blood pressure and help preserve your heart.

If that's too difficult, consider adding a multivitamin with 400 MCG of folic acid (one of the B vitamins) to your breakfast routine. Taking folic acid decreases the risk of developing colon cancer 75% over 15 years, according to a study of 90,000 nurses published two years ago. And don't forget to exercise. Joggers in particular seem to have a lower rate of colon cancer, but any physical activity is beneficial.

Whatever you do, don't let embarrassment stand in the way of your health. When Brenda Billingsley of Wilmington, Del., developed abdominal pains two years ago at age 48, she told her doctors about most of her symptoms. But she never talked about the way her stools had changed shape (and she wasn't asked). The pains must be menopause, the doctors decided. Then a year ago, during a flexible sigmoidoscopy, a physician discovered a tumor the size of a golf ball that had begun to spread. Aggressive treatment seems to have left Billingsley cancer free. Now she's on a mission to persuade family and friends to be screened. "I just goad them until they do it," she says. Katie Couric would be proud.

--Reported by David S. Jackson/Los Angeles, Alice Park/New York and Dick Thompson/Washington

With reporting by David S. Jackson/Los Angeles, Alice Park/New York and Dick Thompson/Washington