Arturo Chavez, 24 years old and dying of cancer, shifts uncomfortably in his hospital bed. At 114 pounds, he is a wisp of his former self, 60 pounds lighter than he was during the good times, when he was well enough to work scrubbing dishes at a fancy Melrose Avenue restaurant. His voice is weak. His brown almond eyes are sad.
Yet his words are sensitive and wise, a wisdom that belies his youth.
He is talking--in slightly broken English, for Spanish is his native tongue--about a mistake he made in his younger days. It was a serious, serious error. Five years ago, shortly after his skin cancer was diagnosed, Chavez quit the chemotherapy treatments that might have cured him.
"Doctor told me, he said, 'Maybe five years, 10 years, your problem's gonna grow up.' I say, 'God, it's his decision. If I get sick, I get sick. And that's why I made that decision.' I was wrong, 'cause the doctor, he told the truth."
Today, while oncologists at County-USC Medical Center search for a new treatment for Chavez in the aftermath of two rounds of unsuccessful chemotherapy, the young Mexican immigrant tries not to dwell on his fateful choice. But in pockets of academia here and elsewhere in the country where Latinos are clustered, medical researchers are acutely interested in decisions such as the one Chavez made.
They are trying to determine how culture and ethnicity influence the beliefs that Latinos hold about cancer, and thus their responses to the disease. Their aim is to solve an unsettling paradox: why Latinos, in general, have lower rates of cancer than Anglos but are equally likely to die of the disease and are often more ill when their disease is diagnosed.
The reasons are complex, having to do in part with socioeconomic factors, language barriers and a lack of health insurance.
But an emerging body of thought says that cultural attitudes and fears play an equally powerful role. And although beliefs may be difficult to quantify, research is beginning to bear this out.
This month, in the first study of its kind, doctors at the University of San Francisco and Kaiser Permanente reported that Latinos are more likely than Anglos to have misconceptions about the causes and symptoms of cancer, and that Latino attitudes toward the disease reflect exactly what Chavez expressed--a sense of fatalismo , or fatalism. This outlook, the authors wrote, may keep Latinos from seeking treatment as soon as they should or from taking advantage of preventive measures, such as breast cancer screening.
The study, published in the Journal of the American Medical Assn., looked at 844 Latinos and 510 Anglos, all members of the Kaiser Permanente medical care program--an important criterion because it means both groups had equal access to health care. Most of the study subjects were longstanding U.S. residents--also important, because it means the Latino patients were more acculturated, or Americanized, and thus more likely to think the way most Anglos do.
But there were startling differences in the two groups' attitudes nonetheless.
Latinos, the study found, were far more likely than Anglos to hold the erroneous beliefs that cancer could be caused by sugar substitutes, bruises from being hit, microwave ovens, eating pork and breast-feeding. They were more likely, as well, to believe that cancer is beyond their control.
The research found that 46% of Latinos, as compared to 26% of Anglos, believed cancer is akin to "a death sentence." Among Latinos, 7% believed that cancer is God's punishment, compared to 2% of Anglos. Latinos were more likely than Anglos--26% to 18%--to think that cancer cannot be prevented. So fearful of the disease were Latinos that many told researchers they did not even want to talk about it, and more than one-third said they would not want to be told if they had incurable cancer, compared with less than a quarter of Anglos.
The findings caught the study's authors off guard.
"We were surprised because these are Hispanics with access to health services," said Fabio Sabogal, a UC San Francisco research psychologist who is one of the authors of the study. "So if people with access to health services have these misconceptions, could you imagine what happens with Latinos who don't have any insurance, don't have any access to health care or lack bilingual health care providers?"
Not surprised, however, were doctors, nurses and other health professionals who spend their time caring for Latino patients. The JAMA article simply confirmed what to them is obvious.
"These are things that we have kind of known," said Amelie Ramirez, a health researcher in San Antonio who directs an effort to persuade Latino women to undergo breast and cervical cancer screening. "But now we are finally able to put research to it and substantiate the data."
Marie Fuerst, an oncology nurse specialist at County-USC, says not a day goes by when she doesn't run into attitudes like those the San Francisco study describes.
"I just got off the phone yesterday with a son whose mother has stomach cancer," Fuerst said, explaining that she had called the family after the woman had failed to show up for treatment. "We want to treat her and he said, 'No, my father had stomach cancer and he just prayed and he lived for a few months, and you don't need to do anything for my mother.'
"It's very frustrating when they don't come for therapy, when you know that you can actually help them, that you could make their quality of life better, treat the cancer and in some cases, get it cured."
Scientists have long known that cancer affects minorities at different rates and in different ways than it affects whites. Yet on a national scale, the data about Latinos is either slim or nonexistent. For years, the National Cancer Institute has been collecting and publishing data on cancer rates in blacks and whites, lumping Latinos in with the whites.
"We don't have enough data," says a frustrated Elva Ruiz, who runs the NCI's Hispanic Cancer Control Program, a fledgling attempt by the institute to correct this disparity.
The picture is somewhat more complete in California, where state officials, relying on regional "tumor registries," track cancer rates among Anglos, African-Americans, Latinos and Asian-Americans. The state figures--which reveal that blacks are by far the group most adversely affected by cancer--show that each year, cancer strikes 241 out of every 100,000 Latinos, as compared to 366 out of every 100,000 Anglos.
Because cancer strikes fewer Latinos, there are also fewer Latino deaths from cancer; 102 out of every 100,000 Latinos die of cancer each year, as opposed to 166 out of every 100,000 Anglos. Medical authorities have been at a loss to explain the low rates.
Yet numbers can be deceiving; experts say that what these figures do not reveal is that even though Latinos are less likely than Anglos to be stricken by cancer, once they have the disease they appear to be just as likely to die of it.
Here again, the data is slim. The only statistics on cancer survival rates among different ethnic groups were compiled in 1984 by the National Cancer Institute, which drew its figures on Latinos from the state of New Mexico and the San Francisco Bay Area. Comparing follow-up studies of individual cancer patients during the late 1970s, the NCI report concluded that "survival rates for Hispanics were almost identical to those for Anglos."
More recent studies have also shown that cancer is more likely to be diagnosed in Latinos at a later stage than Anglos, suggesting that many Latinos do not seek treatment early enough. This leads authorities to suspect that the picture may be even worse than the limited data indicates. Latinos, they say, may in fact be dying too frequently of certain cancers--especially those that can be prevented through screening.
In California, 43% of Latino women's breast cancer is diagnosed at a late stage as compared to 32% of Anglos. Eleven percent of Latino women's cervical cancer is diagnosed at a late stage; the figure among Anglos is 8%. Among Latino men, 35% of prostate cancer is diagnosed at a late stage as compared to 30% of Anglos.
Health care providers who treat Latinos say they tend to forgo preventive measures such as mammograms and rectal examinations, and they tend to delay visiting the doctor once they experience symptoms. And, they say, Latinos appear less likely to follow prescribed treatments, perhaps because they feel it will do them no good.
"They have these feelings that if they get cancer or not, it is much a question of luck, so if there is nothing they can do about it, why worry?" said Dr. Aliza Lifshitz, president of the California Hispanic American Medical Assn., a statewide group that represents 1,300 physicians.
For example, an examination of breast cancer victims listed in the Los Angeles County tumor registry found that nearly 60% of Anglo women visited a doctor within the first month of experiencing symptoms, while only 46% of Latino women did.
Not surprisingly, the study also found that at the time the disease was diagnosed, the cancer was more likely to have spread beyond the breast in Latino women. Among Anglo women, 44% were found to have non-local cancer, as compared to slightly more than 50% of the Latinas.
In addition, the data showed that Anglo women were significantly more likely than Latinas to have their breast cancers diagnosed without showing any symptoms--an indication that the Anglos were more likely to have undergone mammograms.
Jean Richardson, the USC associate professor of preventive medicine who conducted the research, says the findings--which revealed patterns among black women that were very similar to the experience of Latinas--were not completely explained by socioeconomic status. When low-income Anglo women were compared to low-income Latino women, the Latinas' disease was still more likely to be diagnosed at a later stage, she said.
Richardson says the explanation provided by the San Francisco study--that fatalismo is at work--is "quite plausible."
But the San Francisco study did not link attitudes with actual behavior; no data exists on whether the beliefs expressed by the study subjects actually prevented them from seeing a doctor or obtaining preventive screening. This leaves room for debate over the findings--and a debate clearly exists.
Several researchers who are also examining attitudes toward cancer expressed skepticism about the study. Some said the work could not be generalized to the Latino population at large and is merely a reflection of the small sample of residents surveyed.
Others said fatalism is not the main culprit. They attribute findings such as Richardson's to other factors--lack of health insurance, language barriers and the fact that the federal government's massive educational campaign about cancer has done little to reach the Latino community.
Ramirez, the San Antonio researcher, says beliefs are linked to education, or the lack of it.
"My impression is that it is more a lack of knowledge contributing to that fatalism," she said. "What we are seeing is a cycle here. What happens is that Hispanics wait until they are very ill to access care, and once they get in they are diagnosed with something serious.
"So the attitude is, 'Why should I go see the doctor? They're going to tell me something is wrong with me.' They say, 'Well, it's God's will.' But we feel that that can be changed through education."
This notion--that having cancer is God's will--is a recurring theme in conversations with Arturo Chavez, the young patient at County-USC. In many respects, he provides an uncanny portrait of the Latino culture that the San Francisco researchers described.
Chavez's skin cancer was diagnosed when he was a teen-ager; it began with a small growth on his left foot. But, he says, he didn't worry too much about it at the time. If it didn't hurt, he figured, how bad could it be?
"I was feeling, maybe I don't have nothing," he said. "I was thinking, I don't have nothing, because I didn't feel it."
But chemotherapy made him feel sick. And so Chavez abandoned the treatment, not believing his doctors' warnings. About a year ago, the cancer came back, this time in the form of a massive tumor on the young man's thigh.
The doctors performed surgery to remove the growth and recommended chemotherapy again. Again, Chavez resisted, preferring instead to go to Mexico to visit his mother. Six months ago, another tumor grew in its place. And the cancer has since spread to his stomach. Now, surgery is no longer an option. And the chemotherapy he has received is not working.
Like those interviewed by the researchers in San Francisco, Chavez does not like to talk about his sickness. He has a wife and young son, whom he has sent back to Mexico, but he does not share his deepest thoughts and fears with them, nor with his relatives here. His mother is his chief source of comfort, along with the leather-bound Bible he keeps by his bed.
He speaks often of God, and believes the cancer is punishment for the excesses of his youth, for nights spent drinking and partying. "I think it's maybe because God wants me to change," he said.
And change he has, although it has probably come too late. Chavez's words, spoken in soft tones, reflect the new views he holds about cancer. His message is a painful one.
"You have to let the treatment work," he says. "A lot of people, they get cancer, they never take care of themselves. They say, 'Well, I'm gonna die anyway.' But that is not the way. The way is to fight, fight with the cancer."
The Demographics of Cancer
Though national statistics are scarce on cancer among Latinos, California's tumor registry shows that, in general, Latinos have lower rates of cancer than Anglos. A notable exception is cervical cancer. Here is what the numbers show.
Annual incidence cases per 100,000
Source: California Tumor Registry, California Department of Health Services