CLOSING IN ON Cancer

CLOSING IN ON Cancer

Treatments now being tested! can stop cancer-without the hideous side effects of chemo and! radiation. Soon, cancer may be an illness people live with, not die of.

FOR SARAJANE AVIDON, THE WORST PART WAS THE WAITING. "Week after week I'd call the doctor and say, 'Is it here yet?' And week after week he'd tell me, 'Not yet. Soon.' I remember saying to him at one point, 'Hey, come on, what do they have to do to make this stuff?"' Then Avidon, 56, lets loose a husky rollicking laugh--a laugh she's cultivated over 30 years as an actress in Chicago. The stuff in question was an experimental drug code-named IDEC-C2B8. And though Avidon isn't one for melodrama, she knew it might be her last, best hope.

Diagnosed with lymph node cancer in 1993, she'd been through it all: surgery, chemotherapy, radiation. The treatments had beaten back the cancer each time, but the remissions didn't last. "Of course I was worried," says Avidon. "I was worried sick."

Then, in the spring of 1996, her doctor told her about the new drug. "I didn't think twice," she recalls. "I said, 'Let's go for it."' In November of that year her medical team got the green light to undertake a trial of the therapy, a combination of two drugs. Two shots a week apart--with none of the horrific complications of chemotherapy--and that was it. Within months her tumors began to shrink. More than a year later the disease was still in remission, the longest her cancer had remained quiet since it appeared.

Last November one of the drugs she received, renamed Rituxan, made history when it won FDA approval, becoming the first of a new generation of pioneering cancer therapies to make the leap from experimental to standard therapy. Of 151 patients getting the same drug at cancer centers around the country, half saw their tumors shrink by at least 50 percent. Nine months after treatment almost three-fourths of those were still in remission.

The new therapy, experts say, is likely the first of many. More promising cancer treatments are moving through the research pipeline today than at any time since the country began its much-vaunted war against the disease in 1971. At least 112 drugs are now in the third and final stage of testing--by pharmaceutical firms where high hopes must toe the bottom line. At the same time the National Cancer Institute is sponsoring some 200 cancer drug trials at respected universities and medical centers.

These ventures offer the first real hope cancer patients have had in a long time. Though the percentage of Americans dying of cancer started to decline slightly in 1991, many experts credit better screening tests rather than advances in treatment. In the New England Journal of Medicine last May, a top specialist in the disease put it bluntly: Doctors are no better at curing cancer today than they were 30 years ago.

But that's about to change. "Three decades of basic research is finally beginning to pay off," says Edison Liu, director of clinical research at the National Cancer Institute. "It's a very exciting time. Many of us are confident we're on the verge of taking a giant step forward in the treatment of cancer."

The biggest advance, experts say, is in grasping what they're up against. In the past doctors had to throw everything they had at cancer, scattershot, because they didn't understand the disease. The only options were to "slash, burn, and poison," as some cancer patients grimly labeled the trio of conventional treatments.

True, surgery can eliminate some cancers, but it may be useless if malignant cells have broken loose and infiltrated other parts of the body. Radiation can shrink or destroy localized tumors but often at the risk of injuring nearby tissues.
Likewise, when cancer spreads, or metastasizes, the counterattack is usually chemotherapy--toxic chemicals that poison not only cancer cells but other fast-growing cells, causing hair loss and lowered immunity. And because cancer cells mutate so quickly that they can rapidly grow resistant to drugs, chemotherapies quickly lose their effectiveness.
The latest discoveries will soon change that whole picture. "We're beginning to see what turns a healthy cell cancerous and how that cancer cell manages to grow and spread," says Robert Weinberg, a biology professor at the Massachusetts Institute of Technology. "We're writing the life histories of many human tumors from start to finish. And at every step along the way we're finding points of vulnerability to attack."

Healthy cells don't suddenly turn into killers. At least six separate genetic mutations have to occur, says Weinberg, before a cell begins growing out of control and becomes, in the chilling language of oncology, "immortalized." Genes that tell a cell when to divide must get jammed in the on position. Fail-safe mechanisms that prevent runaway growth must be short-circuited. Systems that check for mutations have to be disabled, and internal clocks that limit the number of times a cell can divide must be shut off.

What allows so much to go so wrong? Some people are born with genetic defects that make certain cells especially vulnerable to mutation. Cigarette smoke, ultraviolet radiation, and toxic chemicals all can damage cells as they divide. Everyday wear and tear on cells takes a huge toll, too--the reason cancer is more common among older people. Eerily, once healthy cells mutate and escape the body's controls, they become unstable, making additional genetic mutations more likely.

The treatments being tested at centers around the country are aimed at stopping virtually all of these dangerous changes. Not every effort will pay off, of course. But, researchers say, four of the new approaches promise to revolutionize cancer treatment. Someday, one of them may save your life.

1 MONOCLONAL ANTIBODIES "Guided Missiles" That Seek Out Cancer Cells

"YOU NAME IT, I'VE TRIED IT," says Susan Claymon, 59, as technicians prepare to inject her with one of the latest experimental drugs for breast cancer. It's a Thursday morning at the Mt. Zion Cancer Center in San Francisco, and Claymon settles into an easy chair under a window that frames a sky as blue as one a child might draw.
When she was diagnosed 12 years ago, her cancer had already reached 21 of the 24 lymph nodes tested. "Things looked very bleak," says Claymon. But through two mastectomies, chemotherapy, and radiation, she has battled the odds. Now the cancer has spread to her bones.

Claymon is a woman who belies first impressions. Her gray eyes seem washed out until she fixes her intense gaze on you; her pale skin and thin arms can make her appear frail until you hear the fierce determination in her voice. "You find yourself having to give up a lot with this disease. Like your hair," she says with a grim smile, touching the bright scarf tied around her head. "But one thing I've never given up is hope."

Hope, for now, takes the form of a clear liquid that will drip slowly into her veins for the next half hour. Like the drug that's keeping Sarajane Avidon's lymphoma at bay, Claymon's treatment is made up of monoclonal antibodies: molecules designed to latch onto the surface of harmful cells and bring them to heel. It's a strategy borrowed from the immune system, which produces natural antibodies to seek and destroy invading bacteria and viruses. Researchers can now fashion antibodies that function the same way--as guided missiles that home in on specific targets.

Ground zero, in this case, is a molecular change that shows up when breast cells turn aggressively malignant: the overproduction of a protein called HER2/neu. In a healthy cell, researchers think, the protein signals cells to grow and divide in an orderly manner. "A normal breast cell has about 10,000 of these protein molecules on its surface," says Len Presta, a biochemist at Genentech who helped develop Claymon's treatment. "A cancer cell growing out of control may have 100,000 to a million. So suddenly we have hundreds of thousands of identically shaped targets to zero in on." The idea is that by coating the surface of breast cancer cells, monoclonal antibodies will gum up the works so these cells can't multiply. The antibodies may also alert the immune system, which could target the cells for destruction.
"In lab tests we've seen monoclonal antibodies all but shut down malignant cells," says Susan Hellmann, head of clinical research at Genentech. The results from the first studies in humans look promising, though not miraculous. Five of the first 40 women saw their tumors shrink by at least half during the first year of treatment, according to Debu Tripathy, a cancer specialist at the University of California at San Francisco who directs the research program. "For women with advanced disease, that's encouraging." But several of those who did well initially have recently seen their cancers return.

To increase the killing power of monoclonal antibodies, researchers are devising ways to arm them with destructive payloads. At the National Cancer Institute molecular biologist Ira Pastan has linked antibodies for colon cancer cells with a toxin that enters the cell as soon as the missile reaches its target.

Using a similar approach, NCI researcher Thomas Waldmann has paired monoclonal antibodies that attack leukemia cells with radioactive particles. In one recent test the cancer retreated, at least temporarily, in nine of 16 patients. "Until now, we've been able to deliver radiation only from outside, with large machines," Waldmann says. "Monoclonal antibodies can carry radioactive doses or toxic chemicals into the heart of a cancer cell, offering treatments that promise to be both more effective and far less toxic to patients."

2 GENE THERAPIES Customized Viruses Sent to Fix Damaged Genes

IF MUTATIONS DEEP INSIDE CELLS trigger cancer, wouldn't it be great to go in and do some repairs? Amazingly, that looks possible. In another strategy designed to zero in on cancer cells, researchers have turned to a surprising ally: viruses. Viruses are really nothing more than strands of genetic material--operating instructions for making new versions of themselves. Once viruses invade a cell, they insert their own genes into its DNA, turning the cell into a virus-producing factory. The high hope of gene therapy is to find ways to tame viruses and then engineer them to carry new or repaired genes into living cells, undoing the genetic mutations that might otherwise add up to cancer.
Luckily, basic research has turned up dozens of targets, from the growth-stimulating genes that get stuck in the on position to genes that normally keep growth in check but become shut down in cancerous cells.

One promising candidate is a gene known as p53, which monitors genetic mutations and orders cells to self-destruct if their inner code becomes too mangled. Usually the system prevents runaway growth. But in half of all cancers the fail-safe system itself becomes disabled, allowing even badly mutated cells to go on proliferating out of control. If p53 can be replaced--or if cells with the defective gene can be destroyed--cells on the way to becoming cancerous might be stopped dead.

At Introgen Corporation in Austin, Texas, researchers have already used a cold virus to ferry p53 genes into cancer cells. Preliminary studies suggest the therapy shrinks tumors. Using another approach, scientists at Onyx Pharmaceuticals in Richmond, Virginia, have tinkered with an otherwise harmless virus so that it targets and kills cells that carry defective p53 genes. If ongoing research pans out, physicians could use the virus to destroy errant cells before they grow into tumors.

At the National Cancer Institute, meanwhile, scientists are already using gene therapy to circumvent cancer's ability to become resistant to chemotherapies. The human body's cells are equipped with tiny pumps that turn on now and then to remove toxins that may find their way inside, explains NCI researcher Ken Cowan. "But when cells become cancerous, they turn the pumps on full-time, so that anything toxic that enters the cell gets churned right out again, including every chemotherapy drug in use."

Scientists recently identified the mutated gene that keeps the pump going in cancer cells, and in a stratagem worthy of their adversary, Cowan and his team are using a harmless virus to insert it into healthy white blood cells. "The hope is that if we can protect healthy cells by giving them resistance to chemotherapy drugs at the outset, we can avoid some of the worst side effects of chemotherapy, like suppression of the immune system," says Cowan. "And we should be able to hit tumors with higher levels of chemotherapy." NCI researchers have succeeded in getting new genes into patients' blood cells. Now they're working to improve the technique so that enough cells receive the gene to confer significant protection.

Another genetic approach to halting cell mutation is using short strands of artificial DNA engineered to lock onto portions of the defective genes and dissolve them. The experimental treatments are called "anti-sense" drugs because they gum up the gene segments that relay operating instructions to the working parts of a cell. They're now being tested against ovarian, lung, brain, rectal, pancreatic, colon, and breast cancers.

3 CANCER VACCINES Shots That Incite the Immune System to Attack Malignancies

"FROM THE START I knew it was going to be a fight," says Gina Rivera, age 50, a lieutenant commander in the U.S. Public Health Service in Honolulu who found out she had colon cancer in 1994. Since then she's endured a grueling course of chemo and two brutal operations, while the tumors nonetheless spread to her lungs. "Even before the surgery I sat down with my oncologist and said, 'What's next for me? Isn't there something else we should try?"' The answer astonished her.

Dozens of experimental treatments were already being tested on people with colon cancer. "All it took was one call," Rivera says, to a toll-free number maintained by the National Cancer Institute. Three months later she was on her way to its Maryland headquarters to receive her first dose of a new vaccine. Unlike a flu shot, which is designed to prevent disease, her vaccine would help fight an illness already raging.

The idea behind all vaccines is simple. The immune system detects invaders like cold or flu viruses by way of telltale molecules on their surfaces--microscopic fingerprints. Once the system spots a foreign print, it attacks and eventually destroys the infectious agent that carries it. Standard vaccines are harmless versions of the same foreign molecules--sometimes in the form of killed or severely weakened viruses--that alert and mobilize the immune system in advance of infection. If the real enemy comes along, the body is ready.

In theory, the same approach could be used to prime the immune system to kill cancer cells. But there's a catch. Unlike viruses and bacteria, tumors aren't foreign invaders; they're our own cells gone awry, and they still look like family to the immune system. That's probably why immune cells seldom disturb tumors. "So the trick is to identify key changes that occur when a normal cell becomes cancerous," says Greg Curt, who directs in-house clinical research at the NCI, "tiny alterations on the surface of the cell that we can wave like a red flag in front of the immune system and say, 'This is a bad guy now. Get him."'

Rivera's experimental vaccine targets a change that occurs on colon cells when the gene that orders them to divide called RAS, gets stuck in the on position. It's estimated that up to 20 percent of all cancers have defective RAS genes, so the vaccine has promise beyond treatment of colon cancer. NCI researchers are also testing vaccines against mutations of the crucial p53 gene. Researchers hope the shot will alert immune cells to the alteration, prompting them to destroy the tumor.

After three monthly treatments, Rivera held her breath: Only if her tumors had remained the same size or shrunk would she be allowed to go on. "It was a very nervous time," she says. No matter what she'd tried in the past, the cancer had roared back. But tests revealed that the tumors hadn't grown or spread for the first time since her diagnosis. A month later she was back in Maryland to start the next three treatments.

Oncologist Samir Khleif, who's directing the NC! study, is nonetheless cautious. "It's too early to know if the vaccine is making any difference and, if it is, whether it will go on working," he says. Still, many cancer experts are hopeful. Shots against cancers of the skin, breast, ovaries, cervix, colon, pancreas, stomach, and lungs are currently being tested in humans.

At the John Wayne Cancer Institute in Santa Monica, California, researchers have devised a powerful melanoma vaccine called C-VAX. "Not all patients respond," says Donald Morton, who developed the shot. "But among those who do, survival has increased from seven and a half months to 76 months. So we're very excited." The final tests needed to win FDA approval have just begun at 22 cancer, centers around the world.

4 ANTI-ANGIOGENESIS DRUGS Therapies Designed to Starve Tumors to Death

TO GROW AND SPREAD, cancer cells have to trick the body into creating extra blood vessels to feed their burgeoning masses. Otherwise cancers would exist only as tiny specks, too small to do harm.

Indeed, many cancers lie low for years. A melanoma may appear as a harmless mole on the skin for five or more years; a cluster of breast cancer cells may lurk for years without causing problems. But then trouble hits: Through mutation, some of the malignant cells gain the ability to signal the body to begin producing new blood vessels, a process called angiogenesis.

"It's as dramatic as a switch being thrown," says Judah Folkman, a researcher at Children's Hospital Medical Center in Boston and the world's leading expert on angiogenesis. "It's at that moment that a cancer becomes potentially dangerous." A tumor that was too small to see can swiftly grow to the size of a marble, a golfball, sometimes even bigger--invading organs, nerves, and bones.

To stop the process, Folkman and other researchers have identified nearly a dozen anti-angiogenic factors--compounds that block blood vessel formation, effectively shutting off a tumor's lifeblood. One discovered in 1985, dubbed TNP-470, is being tested at cancer clinics around the country. Researchers are just beginning to evaluate several other powerful blood vessel blockers, including angiostatin and endostatin.

Already there have been surprises--mostly happy ones. Researchers originally assumed anti-angiogenic drugs would stop cancers from growing but not shrink existing tumors; now it's clear they do both. Cancer specialists likewise thought that the drugs would work only against solid tumors like breast and lung cancers. But the latest animal studies suggest they may also fight cancers of the blood, like leukemia.

Better still, they appear to have few side effects. Since adults normally don't produce new blood vessels, blocking the process doesn't cause trouble. Best of all, cancer cells don't become resistant to these drugs, as they do to chemotherapies.

In one astonishing study mice with an aggressive form of lung cancer were given endostatin after their tumors reached 1 percent of their body weight--the equivalent of a one-and-a-half-pound tumor in a human. When the tumors had shrunk to specks, the drug was discontinued. The cancers began to grow again. Researchers allowed them to reach 2 percent of the mice's body weight before they delivered the drug. Again the tumors withered. No matter how many times the scientists repeated the process, endostatin never lost its punch.

Preliminary studies in humans are equally encouraging. At the Dana-Farber Cancer Institute in Boston, half of the brain cancer patients who received an anti-angiogenic drug along with chemotherapy saw their tumors stop growing or shrink. If good results keep coming, says Folkman, the drugs may soon graduate to broader trials.

"One strategy we're looking at," he says, "is using a drug like angiostatin to reduce a tumor down to a tiny speck and then chemotherapy or radiation to kill the remaining cells. Or it may prove more effective to go the other way: Use conventional therapies first to kill most of the cancer cells and then use an anti-angiogenic drug to keep them from growing back into tumors."

Eventually, he says, it may be possible to spot blood vessels forming in patients whose cancer is in the early stages, then deliver the drugs to stop these small tumors from expanding into life-threatening ones. And because blood vessel blockers seem to have few or no side effects, patients could go on taking them for years.

"Every day our lab gets more than a hundred calls from anxious cancer patients or their families--people begging to get into the latest trials," says Folkman. He tries to respond to as many as possible during off hours, but he can't always tell callers what they hope to hear. "Sure, we're very excited about the prospects. But these are just a few drugs, and they're in clinical trials for a very good reason: because we don't really know yet if or how well they'll work."

Consider the news on using monoclonal antibodies to treat breast cancer. Though some women in studies showed remarkable improvement--in a number of cases complete remission--over time many have seen their cancers grow again. So researchers are checking to see how well the drug works when paired with conventional chemotherapy.
The new treatments, in other words, are likely to be cocktails designed to hit cancer cells from many directions--exactly the approach that has scored dramatic successes against AIDS. After surgery doctors may deliver drug-resistance genes to healthy cells before walloping the cancerous ones with chemotherapy. Then, when most of the malignant cells are gone, they may follow up with a blood vessel blocker to stop any surviving ones from mushrooming into tumors.
"In AIDS drug development it took years for researchers to understand the virus well enough to begin to make truly targeted drugs," says MIT'S Weinberg. With the latest combined therapies, AIDS death rates have plummeted farther and faster than anyone had predicted. "We may be just about reaching that point in cancer research."

To be sure, no one's promising miracle cures. The single best way to attack the disease remains to stop it before it starts, by eating wisely, getting out for some exercise, and following through on the other day-to-day choices known to markedly lower risk (staying out of the sun at midday, for instance). Furthermore, regular checkups and self-exams can detect tumors early in their growth, so early that they can be completely wiped out with conventional treatments.
"Once cancer has spread, one of the first goals is to turn cancer into a chronic disease--something that people can live with rather than die of," says Edison Liu of the National Cancer Institute. "But I think we're closing in on that. And believe me, that's a lot."

Alternatives Worth Trying

Several approaches once considered unorthodox or even dangerous are finding a place In cancer treatment--not as cures but as complementary therapies that can help patients feel better and recover faster.

Mind-Body Techniques

Methods such as mental imagery and meditation allow many cancer patients to ease their anxiety and pain. What's more, since stress sometimes suppresses the immune system, mindbody techniques may help the body's defenses stay resilient.

In 1989 Stanford University psychiatrist David Spiegel found that women who met in weekly support groups survived advanced breast cancer twice as long as those who received standard treatments alone. Several subsequent studies have confirmed these landmark findings. In Spiegel's own later research, women in support groups actually developed fewer new bone and lung tumors.

Acupuncture

It's now widely accepted that acupuncture can relieve some of the unpleasant symptoms associated with cancer. In a 1996 study at Royal Marsden Hospital in Sutton, England, for instance, acupuncture treatments lessened breathing difficulties and reduced emotional distress in cancer patients for up to six hours. Other studies suggest that acupuncture may ease some cancer-related nausea and pain.

Herbal Remedies

A few herbs show promise as cancer fighters. A study at the University of Texas Medical Center in Austin found that astragalus, or huang ch'i, boosts the activity of immune cells taken from cancer patients.

Mistletoe, which has been used in Europe since the 1960s in a commercial form called Iscador, contains cell-killing substances that may be able to destroy tumors. Among 11 studies of the herb, ten suggested that Iscador extended cancer patients' lives; unfortunately, the most rigorous study showed no benefit.

Likewise, when researchers with the National Cancer Institute tested essiac--a mix of Indian rhubarb, sheeps-head sorrel, slippery elm, and burdock root often recommended to cancer patients by herbalists--it didn't shrink tumors in lab animals.

And herbs, though natural, can still be dangerous. Pau d'arco contains an antitumor compound called lapachol that even in small doses can cause nausea and vomiting, and interfere with blood clotting. So before using any herb, check a reliable reference such as Varro Tyler's The Honest Herbal--and talk to your doctor.
Vegetarian Diets

The special diet most often adopted by cancer patients is the meatless macrobiotic regimen, in which 50 to 60 percent of daily calories come from brown rice and whole wheat, 25 to 30 percent from vegetables, and the rest from beans and seaweed. Epidemiologist Lawrence Kushi of the University of Minnesota in Minneapolis is currently tracking down patients who follow this plan to see whether it has clearly helped them.

But while scientists agree that eating plenty of grains, beans, fruits, and vegetables can assist in preventing cancer, few believe that any diet will ever work as a cure. Still, food chemists continue to discover cancer-fighting compounds in plants from broccoli sprouts to soybeans. Eventually doctors may prescribe targeted anticancer diets along with conventional treatments.

Medical Marijuana

Oncologists whose patients try smoking marijuana report that it relieves nausea or post-chemotherapy vomiting for as many as half of them. Pot--either the real thing or a synthetic version of its active ingredient, THC--may also boost appetite, helping cancer patients regain weight lost during treatment (though research on this is scarce). The National Cancer Institute is supporting studies of the medicinal use of marijuana, but for now it remains illegal in most states.
--Peter Jaret

What Causes Cancer?

Often it seems to strike with the randomness of a freeway sniper. Yet cancer isn't always mysterious. "We know everything we need to know to cut the cancer rate in this country by about 50 percent flat out," says Graham Colditz, head of the Harvard Center for Cancer Prevention in Boston. That's 6000,000 fewer cases a year. Here's what to watch out for.

TOBACCO
Smoking causes one of every three cancer deaths in the United States. While it's to blame for almost all cases of lung cancer, it also doubles the risk of bladder cancer and plays a key role in cancers of the pancreas and esophagus.

RED MEAT
Men in one study who dished up beef, pork, or lamb as a main dish at five or more meals a week were three times more likely to develop colon cancer than were occasional meat eaters. In another study, red meat posed a significant colon cancer risk for women, especially when they ate few vegetables.

JUNK FOOD
Fill up on doughnuts, sodas, and potato chips and you're going to pass up the dozens of cancer-fighting chemicals in fruits and vegetables. People who eat at least five fruit and veggie servings a day are much less likely to develop malignancies.

INACTIVITY
Women who log at least four hours of exercise a week cut their risk of breast cancer by more than a third. As for colon cancer the third most common form of the disease--active people are about half as liable to get it as inactive ones.

OVEREATING
The more calories you consume, studies suggest, the greater your risk of colon and prostate cancer. Among women, being heavy adds to the danger from breast and endometrial cancer. Weight gain may be one reason breast cancer rates jump among Asians who move to the United States.

TANNING
Malignant melanoma, the deadliest form of skin cancer, hills nearly 7,000 Americans a year; squamous cell carcinoma. more than 2,000. Sunburns raise the risk of both. A study in Israel found that Orthodox Jews, who wear coats and hats or shawls year round, were much less prone to melanoma than were Israelis who regularly exposed their skin to the sun.

ALCOHOL
Heavy drinking has been clearly linked to cancers of the liver, throat, and esophagus. Women who have just a drink or two a day run a somewhat higher risk of breast cancer.

--Peter Jaret
Lifesaving Tests

The surest way to beat cancer is to detect it early. The odds of surviving colon cancer are nine in ten when it's discovered before it spreads but less than one in 14 after.

What's more, a full 97 percent of women diagnosed with localized breast cancer are alive five years later, compared to only 20 percent of those found to have metastasized breast cancer.

While researchers still debate exactly which tests are most important and at what age people should start going in for regular exams, virtually all experts agree that early detection saves lives. Here's what an advance warning program should include.

BREAST

Self-examination monthly from age 20. Any new or suspicious lumps should be checked by a doctor.
Breast exam by a doctor every three years from age 20 to 39. Annually from age 40.
Mammogram every year or two from age 40.

CERVIX
Pelvic exam with Pap smear annually from age 18 and for younger women who are sexually active. After three consecutive normal result, some doctors recommended testing less frequently.

SKIN
Self-examination once a month. Look for unusual pearly bumps or red scaly patches. Also check for moles that have changed size or color, or have begun to ooze or bleed easily.

COLON

Fecal occult blood test every year from age 50.

Digital rectal exam, performed as part of a standard physical exam, annually from age 40.
Sigmoidoscopy, a rectal exam using a flexible lighted tube, every three to five years from age 50.

PROSTATE (MEN)

Prostate-specific antigen (PSA) test annually from age 50.
Digital rectal exam, as part of a standard physical exam, annually from age 40.

--Peter Jaret

The Cancer Patient's Survival Guide

In the war against cancer Thomas Tourish, 49, is a distinguished veteran. For years he's battled a rare cancer of the abdomen and lungs called pseudomyxema peritonei. Undaunted through six surgeries, chemotherapy, and treatment with an experimental drug, he's prowled medical libraries, pored over oncology Journals, and put in cold calls to experts around the country. "With a cancer like mine, which even many doctors have never heard of, I had to learn everything I could," says Tourish, an assistant attorney with the U.S. Attorney's Office In Washington, D.C. He makes a point of staying in close contact with his specialists. "I call the office every few months and ask for copies of the latest papers, and they send them out." His strategy has paid off: A decade after his diagnosis, he's still alive.

Dig for Facts

Like Tourish, you'll need solid information--on the best drugs, the savviest doctors, the most successful clinics. The information should be current. When it comes to cancer treatment options, anything that's more than two or three years old is likely out of date.

If you don't have the time or skills to do the digging yourself, a growing number of medical search firms will hunt up background facts and copies of relevant articles, and prepare a list of treatment options--for a fee. But many other groups offer free information. (See the other side of this page.)

Chances are you won't understand everything you find. Simply keep a file of the helpful sources and return to them when you have questions. And don't be afraid to ask your doctor about any new treatments your search turns up.

Assemble the Best Team

You have much to gain from helping to pick the experts on your case, from Your primary oncologist to specialists in radiation, chemotherapy, surgery, and nutrition. Start by getting your own doctor's recommendations. Most primary care physicians are affiliated with particular hospitals. If your health insurance allows a choice of facilities, ask your doctor which one has the broadest experience and services. Many experts favor hospitals affiliated with medical schools because they're most likely to offer the latest treatments. But plenty of large community hospitals and cancer centers also give excellent care.

Seek a Second Opinion

Once you've found an oncologist you trust, don't be afraid to ask for another viewpoint, especially when faced with several treatment options. "Good doctors welcome second opinions," says Harmon Eyre, chief medical officer of the American Cancer Society. Luckily, you don't have to go through all those tests and exams again. Usually you can arrange to have your records sent to the second specialist, who will review the results, as well as your doctor's treatment plan, and offer an appraisal.

Look for What's New

There are hundreds of new and ongoing clinical trials (studies of experimental therapies). Many have openings for patients willing to try promising but unproven treatments.

Don't assume that you could end up receiving a dummy pill instead of a real drug. Most cancer trials compare experimental treatments with standard therapies--so no patient is worse off. Hotlines and Internet sites can lead you to the active research projects. But beware of any "controversial" or "breakthrough" therapies that proponents claim have been spurned by mainstream medical science. if a cancer cure existed, everyone would be using it.

Don't Go It Alone

Self-help groups can make the tough times easier. Some studies even suggest that emotional support helps people live longer. What's more, someone who had a treatment you're considering can let you know what to expect.

Read the Fine Print

Study your insurer's current benefits handbook to see what's covered and what's not, how drugs are paid for, and whether you need advance approval for certain kinds of care. Then ask about limits: Does your plan give you access to experimental treatments? Can your regular physician refer you to doctors outside the network or to special facilities? Call about details you don't understand. If you run into problems, call your state's insurance commission.

Keep Your Care on Track

When you're being shuttled among specialists, records are essential. Some patients keep a diary of office visits and test results. But many request copies of their medical records. Expect a small charge for photocopying; X-ray or ultrasound duplicates average $12 each.

Before seeing any new specialist, Tourish sends a letter outlining his medical history and the purpose of the visit, along with all relevant records. "That way when I arrive," he says, "they know exactly who I am and why I'm there, and we can get right to the point."

--Peter Jaret

Resources You Can Count On

Living with a serious illness takes strength and courage--and good information. In fact, the outlook is better for patients who become experts themselves. So we've assembled a thorough guide to the best resources now available. CLIP AND SAVE THIS PAGE.

Hotlines

American Cancer Society, 800/227-2345. Staffers answer questions, send brochures and other material, and make referrals to local groups.

National Cancer Institute's Cancer Information Service, 800/422-6237 Staff consultants give advice on diagnoses, treatment options, and enrollment in clinical trials. The NC! automated CancerFax program, 301/402-5874, faxes information on treatment guidelines, prognoses, research news, and important developments.

Cancer Research Institute, 800/992-2623, publishes a 44-page pamphlet called What to Do If Cancer Strikes, which includes a directory of medical care and support groups.

Institute for Health & Healing Library, in the California Pacific Medical Center, 415/923-3681, will prepare a computer-searched list of current articles on specific cancers for $35. A packet on conventional and complementary therapies for your condition costs $100.

National Cancer Database, 312/202-5000. Ask for a copy of the Annual Review of Patient Care.
American College of Surgeons Commission on Cancer Approvals Program, 633 N. Saint Clair St., Chicago, IL 60611-3211. For $10, sends a list of approved cancer treatment programs.

American Self-Help Clearinghouse, 201/625-7101, publishes a national directory of support groups.
ChemoCare, 800/552-4366, matches callers with cancer survivors who can share experiences about drug treatments and side effects.

Y-ME National Breast Cancer Organization, 800/221-2141, provides information and local referrals.
National Alliance of Breast Cancer Organizations, 212/719-0154 or 800/719-9154, offers information, assistance, and referrals to local groups.

Consumer Information Office of the Medical Information Bureau, 617/426-3660. An automated system can issue a copy of your current medical file and details on disputed claims.

U.S. Department of Health and Human Services, 800/772-1213. An automated system generates updates on Medicare coverage.

Food and Drug Administration, 800/5324440. The agency provides consultation and free brochures on avoiding rip-offs.
Books

U.S. News & World Report's annual ranking of America's best hospitals. (Check your local library's main branch.)
Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery, by the American Cancer Society, Viking Press, 1997, $40.

The Activist Cancer Patient: How to Take Charge of Your Treatment, by Beverly Zakarian, John Wiley & Sons, 1996, $15.
Everyone's Guide to Cancer Therapy, by Malin Dollinger, M.D., and Ernest H. Rosenbaum, M.D., Andrews & McMeel, 1995, $20.

Dr. Susan Love's Breast Book, by Susan M. Love, M.D., Addison-Wesley, 1995, $17.

50 Essential Things to Do When the Doctor Says It's Cancer, by Greg Anderson, Plume, 1993, $11.
Man to Man: Surviving Prostate Cancer, by Michael Korda, Vintage, 1997, $12.

Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer, by Michael Lerner, MIT Press, 1996, $19.

Alternatives in Cancer Therapy: The Complete Guide to Nontraditional Treatments, by Ross Pelton, Fireside, 1994, $12.
Natural Health, Natural Medicine, by Andrew Weil, M.D. Houghton Mifflin, 1995, $13.

Web Sites

National Cancer Institute, cancernet. nci. nih.gov. Has a list of centers testing experimental therapies, as well as fact sheets and updates, plus news about ongoing clinical trials. Also provides access to PDQ (Physician Data Query), the largest resource on treatments and centers specializing in cancer care.

HealthScope, www.healthscope.org, presents tips on choosing a hospital.

American Cancer Society, www.cancer.org. Best site for information on diagnoses, treatments, and emotional support, as well as links to useful Web pages screened for accuracy and reliability.

National Library of Medicine, www.nlm. nih.gov, offers free access to the huge Medline database. Allows users to search articles and read abstracts. Full copies cost about $10.

American Self Help Clearinghouse, www.cmhc.com/selfhelp,includes the best list of cancer support groups.
Food and Drug Administration, www.fda.gov, prints updates on unproven therapies.

University of Pittsburgh, www.pitt.edu/ ~cbw/altm.html, puts up a list of alternative groups and practitioners.
Healthcare Reality Checklist, www. cyberwarped.com, presents reliable information on alternative medicine.
University of Pennsylvania Cancer Center, www.oncolink.upenn.edu, has answers to frequently asked questions about insurance coverage and billing.

Consumer MedHelp, www.consumermedhelp.com. Assists when medical insurance or a claim is denied. Phone consultations cost $1 a minute.
--Peter Jaret
ILLUSTRATIONS
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By Peter Jaret

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