Cancer Patients : Mind Over Body: Doubt Rekindled

If I could change anything about the book, I would put a warning on the cover: Reading This May Be Hazardous To Your Health. --Dr. O. Carl Simonton, co-author of “Getting Well Again,” a best seller advocating self-healing therapy for cancer patients

President Reagan is buoyant. He grins, he thinks positively and to all the world appears to be shrugging off the most feared disease of our time--cancer.

According to widespread popular thinking, his Pollyanna personality is the sort that can prevent or postpone cancer and perhaps such other diseases as arthritis, allergies and heart attacks. With much anecdotal but scant scientific support, many doctors also say such optimism can help slow the progress of cancer or help in recovery.

“I would think the President’s attitude would make the recurrence of his illness less likely,” said George Freeman Solomon, a psychiatry professor at UCLA School of Medicine who started studying the mind/body connection 21 years ago.

Public Going Overboard?

“He probably had it (the malignant tumor) for some time, and it was still very small when they got it out. That may have had to do with his positive attitude.”

Some doctors and even some champions of mental healing are now saying, however, that the public--encouraged by accounts of such dramatic recoveries as that of Norman Cousins--has gone overboard in believing that people can avoid or change the progress of cancer by their thoughts, emotions or personality. Such faith in personal responsibility, they note, can hurt cancer patients who may forsake medical treatment, relying only on a psychological cure, and who may blame themselves for having fallen ill or for being unable to cure themselves with techniques such as positive thinking and visualization.

“For every anecdote about a cancer patient with a good attitude who lived, I can give you 200 about those who had good attitudes and died,” said Dr. Barrie Cassileth, director of psychosocial programs at the University of Pennsylvania Cancer Center in Philadelphia.

‘He Wanted to Live’

“We had a 47-year-old department chairman here at our university who had lymphoma. He had a very positive attitude. He continued to work even throughout his difficult chemotherapy treatments. He had excellent family support. He wanted very much to live. And he died.”

Cassileth is the leader of a research team whose study, published in the June issue of the New England Journal of Medicine, has rekindled the mind/body controversy by concluding that there was no relationship between attitudes and survival or recurrence of cancer for 359 cancer patients, 204 with advanced malignancies and 155 who had had breast cancer or melanoma and were vulnerable to recurrence.

According to Cassileth, the study is the “first methodologically sound investigation of the relationship between selected psychosocial factors and survival in advanced malignant disease.”

Researchers asked the cancer patients about relationships and attitudes that previous studies had claimed affected longevity: friendships and marital status, job satisfaction, drug use and despair or “fighting spirit.” Since the study began in 1982, 75% of the advanced cancer patients--who had been expected to survive a year--have died; 26% of those who had cancer previously have had recurrences.

Those who survived beyond expectation were “not any different psychologically from those who died,” said Cassileth. “Something about their own biology made them candidates for survival. The point is, it’s not their attitude that did it,” she added.

An editorial that accompanied the publication of the study in the New England Journal of Medicine concluded: “It is time to acknowledge that our belief in disease as a direct reflection of mental state is largely folklore.”

In an earlier study, Cassileth said she found no relationship between personality types and such major chronic illnesses as diabetes, arthritis and cancer.

“There’s no evidence that any negative experience (including stress) plays a role in producing cancer,” agreed John F. Potter, director of the Lombardi Cancer Center at Georgetown University in Washington and author of an unpublished book, “How to Improve Your Odds Against Cancer.”

‘Relieved . . . of Guilt’

More important than emotional factors, he said, are the avoidance of known carcinogenic factors--smoking, excessive drinking and sunlight--and promoting early detection of the disease through regular health check ups and self-examination of breasts and skin.

The reaction to her study from patients, Cassileth said, has been one of great relief. “One patient who is also in the media, a very bright person, wrote saying she felt this information (study results) was a pardon for all cancer patients--in that they were relieved of the burden of guilt.”

The most common psychological problem among cancer patients is a mixture of anxiety and depression, according to Jimmie Holland, chief of psychiatric services at Memorial Sloane Kettering Cancer Center in New York. She said some patients blame themselves when they cannot have a positive, cheerful attitude all the time.

“Patients who get depressed should not feel they are making their cancer worse,” Holland said. “I’m concerned when that kind of philosophy is promulgated to patients. They cannot be cheerful every day.

“They feel guilty that they can’t control their illness and feel they have made it advance. They look upon it as a weakness, partly as a result of the culture’s emphasis on psychological means of controlling cancer.”

‘They Don’t Have Control’

Cassileth does not question that the mind influences the body, as when adrenaline is produced after fright, in hypnotic suggestion or in the taking of placebos. Nor does she doubt that attitudes play a key role in whether cancer victims seek medical treatment and in determining the quality of their remaining time.

“What bothers me,” she said, “is the assumption that some people want to live more than others. If they don’t live, it’s not because they failed. It’s because they don’t have control over an uncontrollable biological process.”

Many claim that the popularity of mental healing comes from a mistrust of modern medicine, which has not kept its promise to win the “war on cancer” and at the same time offers treatments that some see as worse than the disease.

Fueling the interest in medical self-help has been the decade-old trend toward self-reliance in all fields: education, consumerism, crime and business as well as health care. The trend has produced such support groups as We Can Do!, Wellness Community, Challenge Your Cancer and I Can Cope, which promote self-help for cancer patients.

At the same time, the power of mental healing has received wide and dramatic attention from two main sources: O. Carl Simonton, a Texas-based oncologist who claims longer survival rates for cancer patients who practice his visualization techniques along with their medical treatment; and Cousins, former editor of Saturday Review, who wrote “Anatomy of an Illness” in 1979. The book relates how he used Vitamin C and laughter to help himself recover from ankylosing spondylitis, a degenerative disease of spinal tissue. Cousins is now adjunct professor of medical humanities at the UCLA School of Medicine.

Fish Swimming in Body

In Simonton’s visualization technique, patients are to imagine that their white blood cells are fish swimming around the body devouring the “grayish cancer cells.” He also counsels patients individually to restructure their lives in terms of improving their diet, exercise, play, social support and purpose in life in an attempt to alter the course of their cancer, he said.

Simonton’s book, “Getting Well Again,” written in 1978 with his former wife, Stephanie Matthews-Simonton, has sold 500,000 copies and has been translated into 10 languages. Six-thousand counselors have been trained in his techniques at his Fort Worth Cancer Center.

Both Simonton and Cousins say their messages have been oversimplified.

“I don’t do anyone a service if I engender more depression or guilt,” Simonton said. “I know it happens, and I’m sorry. I’m glad I didn’t know it would happen as much, or I would have never written the book.”

Simonton has just moved to Los Angeles, where he is opening a cancer center in Pacific Palisades. His Fort Worth cancer center will be phased out, he said. One reason for the move, he said, is that the professional climate for his controversial work is friendlier in Southern California.

Differences over theory sparked his divorce from Matthews-Simonton who, he said, runs a more psychologically oriented clinic for cancer patients in Little Rock, Ark. At the new center adjacent to Will Rogers State Park, his work will continue to offer a multipronged approach.

Not for Everyone

His approach is not for everyone, Simonton said. For those who deny their illness, an intensive psychosocial approach may do more harm than good, he said. “Some people are much better left on their own if that’s their style.” Also, he added, those who enter the program with genuine enthusiasm do significantly better than those who tell themselves, “I have to do this in order to get well.”

Robert Mack, a Seattle surgeon, said his opinions regarding the relationship between emotions and disease were altered after he became aware that he had developed lung cancer six years ago. He said he had lived a stressful life as a surgeon, had suffered the death of his father, the breakup of his marriage and loss of his house through the divorce. He had been a longtime heavy smoker but had stopped six years before the lung cancer was diagnosed.

“Initially I had a 50% chance to survive five years,” he said in a telephone interview, limited by his weakened condition. “When I had a recurrence and bone metastasis, I had less than 10% chance of surviving two years. It’s been six years, and I’m still surviving and functioning,” said Mack, who works one-quarter time as medical director of sustaining care service at Seattle’s Swedish Hospital.

In addition to radiation and chemotherapy, he began counseling with a Simonton-trained therapist who taught him imagery to boost his immune system and relaxation techniques that “helped me have a strong will to live, to value each day one at a time as though that day is the only day that’s left and to think clearly about what I want to do and say on that day.”

Believes Hope Helps

Mack said his oncologist would say it was the chemotherapy that has enabled him to beat the survival odds. He believes, however, that his changed attitude, his new hope and visualization also had a strong positive effect.

Cousins, known as the guru of self-healing, in fact gives primary credit to his physician for his recovery from the serious illness he developed. He said some people have interpreted his message on self-healing as a substitute for appropriate medical treatment. “I never said people can laugh their way out of illness,” said Cousins, 70, of Los Angeles.

“The greatest mistake is to pit (treatments using) patients’ attitudes against medical treatment. Both go hand in hand.”

However, in the last eight years, he said, “I’ve had the chance to speak at length with 360 patients who were seriously ill. Something emerged from those observations. A very significant number have lived far past the time predicted for them by doctors. And the one thing they have in common on their own testimony is that while they did not deny the diagnosis, they did deny the verdict that went along with it. It is almost a blazing determination” to survive.

Cousins criticized Cassileth’s study for relying on the cancer patients’ self-judgments as to the state of their attitudes rather than on medical exams or direct interviews by professionals and for implying that attempts to bolster patients’ attitudes are useless. Because 75% of the patients with advanced cancers died, it would be equally valid to assume that medical and surgical treatment are also useless, he reasoned.

Research the ‘Why’

“We don’t need more research to demonstrate that attitude makes a difference,” Cousins said. “We do need more research to show why this happens.”

In the last 10 years, thousands of studies have shown a direct link between negative psychological states, such as stress, and an impaired immune system, although the precise physiological mechanism has not yet been identified, said Barry Flint, executive director of the Institute for the Advancement of Health, a New York-based nonprofit organization formed two years ago to promote research and education and to serve as a clearing house for findings on the mind/body connection.

Flint called the New England Journal of Medicine’s editorial “irresponsible. . . . A journal with that kind of clout and stature ought to know better.”

The latest research in how the mind (through the central nervous system) affects the body (through the immune system) is explained technically in a thick textbook, “Psychoneuroimmunology,” edited by Robert Ader, and in “Foundations of Psychoneuroimmunology,” edited by Steven Locke and George Solomon.

Ader’s experiments showed that rats could be conditioned to suppress their immune systems. In a test in which they were given both cyclophosphamide (a chemical that suppresses the immune system) and flavored water, they later suppressed their immune systems when fed only the flavored water.

‘Primitive’ Knowledge

Other tests have shown that such relaxation techniques as meditation and biofeedback have substantially reduced the need for insulin in diabetics, Flint said. In addition, studies have found that men whose wives have died experience a depletion of certain cells in their immune systems within five to seven weeks of the death, he added.

Cassileth, however, calls the current state of knowledge “primitive.”

“The immune system is made up of hundreds of components, and they haven’t all been identified,” she noted.

“When you claim a certain attitude will change some biological system in the body and will influence the disease process, you’re talking about a complex series of events about which we know very little.”

One study undertaken in San Francisco last year did show a “very strong” relationship between unexpressed emotion--particularly anger and sadness--and immunological breakdown that accompanies malignant melanoma, said Lydia Temoshok, a psychologist and assistant professor of medical psychology at the department of psychiatry at the University of California School of Medicine in San Francisco. Temoshok declined to reveal details until publication of the study, which was funded by the National Institute of Mental Health and the National Cancer Institute.

Another project, scheduled to begin at UCLA in September, will measure the effect of psychological health on the immune and endocrine systems and on cancer spread and prognosis, said F. I. Fawzy, assistant director of the Neuropsychiatric Institute of the UCLA School of Medicine. In the study, financed by the Kroc Foundation, 225 cancer patients will be divided into three groups. One will receive psychotherapy and learn stress reduction. Their friends and families will be taught about their worries and fears and how best to offer support. Another group will listen to a series of lectures by Cousins on hope and attitude. A third control group will receive medical treatment alone.

‘A Better Outcome’

“Nobody has been able to show that there is a relationship between attitude or stress and the development of cancer,” Fawzy said, adding, “There is lots of research shown that a positive attitude and hope helps . . . that an individual who goes for routine checkups and treatment and who does not allow his illness to interfere in living has a better outcome. They see themselves as a functional human being with a disease, not a cripple with a disease.”

The American Cancer Society predicts five years’ survival for a third to half of cancer patients. Thirty years ago, the rate was around 25%. The five-year survival rate is 74% for breast cancer, 73% for bladder cancer, 70% for prostate cancer and 51% for colorectal cancer.

Last year, the society issued a statement declaring that “available evidence does not support the theory that the use of techniques for reducing stress can change the risk of developing cancer or the duration of survival in humans.”

The society sponsors research on the psychological aspects of cancer, treatment and rehabilitation, said Joan Schellenback, director of press relations.

“It’s clear psychological state does affect the body’s ability to recover its immunological resources,” she said. Whatever the effect of the mind on the immune system, however, it is not enough by itself to combat cancer, she added. “Studies have reported where people came down with cancer shortly after a major loss of a loved one or death. But cancer is a slow-growing item. It takes many years. It’s not accurate to point to an event six months before the diagnosis of disease and say it has something to do with it.”

‘They Won’t Survive’

“Unfortunately,” Cassileth said, “our ability to cure the more common cancers has not improved over the last 40 years. People hear one thing from government in terms of survival statistics, a lot of promises and how money is spent in research. But they also know when they, their friends or relatives get common cancers (such as lung cancer), more likely than not they won’t survive them.”

Historically, people have blamed seemingly incurable diseases, such as tuberculosis in the last century and now cancer, on negative emotions or personalities, according to Susan Sontag, author of “Illness as Metaphor.” Unlike cancer, tuberculosis was considered the manifestation of too much--not too little--feeling, until it was learned that the cause was the tubercle bacillus.

The public misperception of cancer studies is caused by the desire to simplify what is an extremely complex disease, Temoshok said. “One of the problems in communication is that the public would like to grasp something simple like ‘the mind causes cancer.’ They would like to believe that. And the medical profession, too, would like a simple statement like ‘viruses cause cancer.’ But it’s much more complex.”

Temoshok said her work has shown that psychosocial factors do not play a “huge” role in the progression of cancer, but that the relationship does exist. “If I had cancer, I would want to take in all the factors. Even if the statistic is a small percentage, that small percentage can make a big difference.”

‘Flip-a-Coin Decisions’

One recent cancer patient, a respected cancer researcher and educator in Orange County who asked to remain anonymous, said he understands the frustration of cancer patients with the medical system. The 42-year-old researcher said he did not exercise, ate junk food and had exhausted himself traveling around the world on business two years ago, when he was diagnosed as having Hodgkins Disease, a cancer of the lymphatic system.

Although the disease had progressed to stage three, of four, he knew the cure rate for his disease was 70% to 80%. He said he consulted with cancer specialists at Memorial Sloan Kettering Cancer Center, Stanford and the National Cancer Institute. They all recommended different treatments.

“It’s not very reinforcing to realize the level of ignorance about the disease and treatment,” said the researcher, who has studied cancer for 15 years. “There were so many flip-a-coin decisions.”

As he suffered through the chemotherapy treatment he chose, he also underwent monthly psychotherapy with a psychologist. “My attitude fluctuated,” he said. “Some days I felt great and on top of it,” he said. “Other days, I thought, ‘This is going to get me.’ ”

He read “Anatomy of an Illness,” he tried visualizing a Pac Man in his body chasing and devouring his cancer cells. “When you’re sick, you get desperate,” he said. “You try anything.”

Taking Stock Daily

After his first chemotherapy treatment, he said, his cancer went into total remission. The treatments continued for a year, during which time he decided to improve his diet, exercise regularly, decelerate his work schedule and take stock daily of his emotional and physical well-being.

Today, many colleagues do not realize he had cancer. (He does not want it generally known because he does not want his own story to play a role in his fund-raising efforts and because many people still regard cancer patients as lepers.)

He is sure that mental attitude plays a role in the course of disease and recovery. He has no idea how much. “You need to have the best medical treatment and on top of that, good mental attitude. If you can’t have both, I’d take the medical treatment.”

No matter whether it was a virus, his own genetic makeup or the environment that brought on his cancer, he chalks up the onset to “bad luck.” And beyond his educated choices in treatment, his remission, he believes, was caused by “pure good luck.”