Cancer Survivors: Coping With Life : Doctor Who Conquered Illness Urges Support for Others

Dressed casually, standing in the morning sunshine packing the station wagon for a camping trip with his wife, son, two daughters and the family dog, Dr. Fitzhugh Mullan looks like neither the highest-ranking health official in New Mexico nor a man nearly killed by cancer a decade ago.

In reality, Mullan, 43, is both. He oversees 3,300 employees and a budget of $160 million as secretary for health and environment to Gov. Tony Anaya, one of the nation’s most controversial state house leaders.

More important, perhaps, as one of the most prominent cancer survivors in the United States, Mullan is a leader in the struggle for more widespread recognition that, because cancer is being cured more often than ever before, medicine and society have to learn to cope better with the problems faced by people who live through it.

Small Audience

He has been voicing these concerns for several years, attracting a small audience outside the immediate circle of medical specialists who treat cancer and the people who have contracted it and survived. One of their hopes is that President Reagan will prove, over time, to be a long-term survivor, too, and that his case will be as prominent an example of coping with the challenge of survivorship as it has been a public vehicle for new awareness of his specific disease--colon cancer.

Mullan and Dr. Robert McKenna, the Los Angeles cancer surgeon who is this year’s president of the American Cancer Society, hope to attract more interest in survivorship. To them and others prominent in the developing field, the situation is both testimony to the growing success of cancer treatment and a statement about how medicine and the public at large have paid too little attention to the sometimes special needs of people who, though cured, bear both the physical and emotional scars of the disease for the rest of their lives.

Standing in the driveway of their house near downtown Santa Fe, the Mullans as a family look as if they were posing for Norman Rockwell:

--Judy Mullan, the social worker, wife and mother. Judy, who bore the months of sickness and the brushes with death as the interim chief executive of the home and who did the job so well that, she laughs now, when Fitz came home from the hospital, “I started to feel like I was sort of an Amazon. I was strong. He came home and he was sick and I had these images that I’d crush him or something. That was my conception of myself.”

--Meghan, 13, the firstborn who was 3 when her father found his cancer himself one day, glancing at an X-ray of his own chest. (It turned out the cancer was a type called seminoma--a hard tumor that is usually a metastasis of testicle cancer, which Fitz did not have, but which sometimes occurs spontaneously in the chest.) Meghan, sharp and hoping for a career in journalism, came home from school one day when she was 8--Fitz had reached the sometimes magical five-year survival point by then--in tears, Judy recalls, because she hadn’t really understood the ramifications of the word cancer until that day.

--Caitlin, 9, born while Fitz was still undergoing treatment for his cancer.

--Jason, 11, adopted later and the son who came to the family when he was 3 and added extra stimulation.

--Ranger, the golden retriever who wags his tail eagerly, impatiently waiting for the camping trip to begin.

Scars Visible

--Fitz himself, his chest turned into a case study in reconstructive surgery, who has scars visible on his arms from where skin was transplanted to patch his radiation-burned chest. He does not follow fashion and leave the front of his shirts unbuttoned.

It is a happy, contented group. The kids find Santa Fe a little tame. They are impatient for the camping trip to begin.

Cancer survivors--and their families--emerge from the physical and psychological traumas of discovery of their disease, diagnosis and treatment scarred by surgery, sickened by chemotherapy and weakened by huge doses of radiation. They are alive--some times for a few months or a couple of years--but, increasingly, for many years or many decades.

Survival Rate Up

According to the American Cancer Society, there are 5 million people alive now who have been diagnosed as having cancer, 3 million of whom who have survived five years or more. The figure is up markedly since a National Cancer Institute survey in 1971 found 2.9 million people who had had cancer, with 1.3 million alive five years after diagnosis. Cancer experts say the number of long-term survivors is certain to grow quickly in the next decade and beyond.

As they make the transition from the immediate treatment phase, however, and progress into survival--a period that, Mullan says, has what he calls “seasons” of its own--people who have had cancer often find that they have passed into a vacuum about which little is known. A cancer victim, for instance, Mullan and other survivors say, can never come down with a cold without experiencing a reprise of the first cancer terror. What if it has come back?

A cancer victim acquires what might, to others, seem a perverse notion of good fortune. Mullan, for instance, had cancer surgery on Good Friday, 1975. He survived the surgery--just barely; complications on the operating table almost killed him. Fourteen months later, he was back in the hospital for drastic treatment of the aftereffects of the radiation therapy which had been administered to prevent the recurrence of the tumor that had grown to the size of a tennis ball.

Stomach Pains

Things went fine after that, until 1979, when he started having acute stomach pains and bloody diarrhea. It wasn’t cancer that time, but Crohn’s disease, a serious intestinal disorder that would, for almost anyone else, have seemed like a calamity of the first order. Mullan’s lower intestine was later removed and he has an ileostomy so body wastes can be collected outside of his body.

Lightning, as Mullan explains it, had struck a second time. “Whatever mental stability I’d been able to reestablish went down awful quickly,” he recalled in an interview. “I was sure these vague symptoms were the cancer coming back. But then I remember coming out from under (the anesthesia from the intestinal surgery) and the doctor says, ‘It’s Crohn’s.’ I remember the relief at having a horrible, in some ways worse diagnosis than cancer. My attitude was, ‘Thank God it isn’t the cancer again. It’s only Crohn’s!’ ”

Mullan has been cured of his cancer, by any objective measure. The tumor is gone; it has not returned, and there is virtually no practical possibility it will. But cancer--or the fear of it--will be with him for the rest of his life. He expects that his life span will ultimately be shortened by his cancer, but in all likelihood he will not be recorded as a cancer death when or if that occurs. The nerve controlling the breathing muscles on one side of Mullan’s chest was severed in his tumor-removal surgery. As a result, his lung capacity is permanently diminished.

His heart beats abnormally fast, and it remains uncertain what the true long-term effects will be of the radiation therapy that destroyed his breastbone in the process of saving his life. The treatment may also have weakened the muscle of his heart. “I won’t be scored as a cancer death, but I will be,” Mullan said.

‘Vital Signs’

In 1983, Mullan described his experience in a book, “Vital Signs”--still available in paper back though it never appeared on any best-seller lists. Several weeks ago, Mullan published an essay in the New England Journal of Medicine setting out his notion of the various seasons of survival, trying to begin a process by which physicians and laymen may change their approaches to what Mullan likes to call cancer’s alumni.

Some survivors are like Natalie Davis Spingarn, author of the 1982 book “Hanging in There: Living Well on Borrowed Time.” Eleven years ago, Spingarn, who resides with her husband in Washington, was diagnosed as having breast cancer and underwent breast removal surgery. She is symbolic of another variety of cancer survivor because, in 1977, her cancer flared anew and then, two years later, it returned yet again. It had spread into her bones. She still undergoes periodic chemotherapy.

But Spingarn isn’t dead or an invalid. She is, so far, a survivor, just like Mullan. “I walk. I talk. I work half-time. I travel and I’m doing the best I can,” she said in a telephone interview. “I’m alive.” With breast cancer survival rates increasing--like those for many cancers--there are likely to be ever-increasing numbers of Natalie Spingarns. They aren’t necessarily cured, but they survive for many years, living, working, laughing and crying.

Spingarn’s cancer, though, has left her with far less energy than she used to have and full-time employment is out of the question. Keeping up her health insurance is a nagging, full-time concern for her--as it is for most long-term cancer survivors, Mullan agreed, because insurers often take a hard line with cancer patients, making it permanently impossible for them to get coverage.

Both Mullan and Spingarn are veterans of what Mullan likes to call the “Humpty Dumpty Syndrome,” an evolutionary process common to survivors. The syndrome begins with the stubborn hope that a victim can be fully cured and returned, both physically and psychologically, to the same condition he or she was in before the cancer struck.

“At first, you’re sort of fixated on cures,” Mullan said. “As you move into the extended phase (of survival), you become focused more on the stuff you’re struggling with at the moment. At first, you want to go back to being just the way you were. You ask yourself, ‘When will this all be behind me?’ It’s like you had the flu. You want to know when you’ll be over it and back to work full time or jogging.

“After a while, you forget about jogging, or whatever serves as your metaphorical jogging. The Humpty Dumpty notion fades and you just want to be functional.

‘Wishing for Scars’

“I remember wishing for scars. People think a scar is an ugly thing, but it beats the hell out of an open wound. I would say, ‘I’m not looking for a (cosmetically) perfect job. I don’t want to wear a bikini.’ I literally and figuratively would have been happy with scars because they mean that the process is ended . You can live and function with your scars. There is this downward adjustment of your expectations.”

Trained as a pediatrician, Fitz Mullan had gone through medical school at the University of Chicago and emerged with a doctor’s statistical sense of cancer survival. It is an approach he now knows does not and cannot reflect the reality a cancer victim experiences. This ersatz sense of survival is based on achievement of the magic five-year interval after treatment when a person who has had cancer is actuarially and medically judged to be cured.

Perhaps fueled by news media coverage relying on a statistical approach emphasizing the percentages of patients reaching the five-year plateau, survival is perceived publicly as a sort of finish line. The patient runs through the tape after five years and disappears into the winner’s circle, cancer-free, totally normal once again.

But survival, agreed Mullan, McKenna and Spingarn, is not nearly so simple. It’s not a point that is reached at all, but a continuum for life. Mullan lost track of his own survival and was a month past the five-year mark before he realized it. It had lost its significance as a goal.

“Those numbers (odds for survival with certain cancers) don’t mean very much,” McKenna said. “There is no doctor on Earth who can tell you if you are going to survive. You can have a computer full of statistics, but that doesn’t tell you what is going to happen to you with this problem. But this does not get vocalized very much. It’s all or none. There is no partial survival. You are either going to live or not.”

Like Iron Lung

Contemporary survival, moreover, Mullan believes, is complicated by the fact that today’s cancer therapy--while it is far better than what was available 25 years ago--is really a science still under development. By the turn of the century, it will doubtless be possible to target and tailor cancer treatment far better than it is now. In certain ways, says Mullan, cancer therapy is a little like the iron lung of the 1950s and 1960s--interim technology to be used until something better comes along.

It keeps people alive, but with serious problems of its own. Treating cancer is still in many ways a bit like killing flies with clubs.

“We have been in headlong pursuit of the magic bullet for cancer,” said Mullan, “and we have found, if not some magic bullets, some bullets that have effect. But the mentality of the bullet-finders is either (uninterested) in or tends to disallow the fact that there are problems for those who survive.

“The attitude very grossly is, ‘Hey, baby, you survived; you ought to be thankful. So what if you can’t breathe or you’re missing a leg or a breast or you have scarred or burned skin?’

“I don’t say that as an ingrate. I am delighted to be alive. But the mentality that says this is the state of the art while we get onto a better bullet--and to heck with the wounds and the scars of people who experience the bullets we have now--is fairly narrow.

“We need bullet makers. But we also need to worry about picking up the people along the way. It is not just hand holding. This is amenable to research.”

There has been little research on so-called survivor issues yet. What has been done implies the existence of an enormous, and growing, unmet need. At Stanford University, social worker Pat Fobair is completing a study sponsored by the Robert Wood Johnson Foundation in which she found that, of 400 cancer survivors who agreed to detailed interviews, 25% had experienced serious difficulties after recovering from their cancers--including sexual problems, loss of energy, difficulties with employment, depression and the breakup of marriages because of the stress imposed by the cancer and its care.

Studies of Survivors

At Memorial Sloan-Kettering Cancer Center in New York, Dr. Jimmie Holland, a psychiatrist who is at the vanguard of a new sub-specialty mating mental health and cancer care, has supervised several studies of survivors. In one, researchers studied the effect on intellectual development of radiation therapy in children with brain tumors. The study focused on a clearly physiological ramification of increased survival among children who are cured of cancer and found that, while there is some decrease in intellectual development in such children, the effect is very slight. In other research, reproductive problems of young men and women with cancers of the reproductive organs were studied and problems turned up for both sexes.

“What you see is that none of the survivors are showing extreme psychiatric symptoms,” Holland said in a telephone interview. “If you talk to these people casually, you’d assume most of them are normal. However, if you talk with them at more length, you discover that they do have some recurrent anxiety. Are they different? It seems so. It seems that there is something about having had cancer that makes people more afraid of it coming back. Somehow, one can deny heart disease more than cancer.”

Complicating the survivor question is the reality that the war on cancer is being fought with uneven effect. Some cancers--like testicle cancer, Hodgkins disease and childhood leukemia--have been turned from always-killers into almost-never-killers. Other cancers, like breast canceer, have seen major advances with enormous gains in long-term survival, but they remain unevenly controlled and subject to recurrence. Still others, like lung cancer, are as stubbornly and gruesomely fatal now as they ever were; lung cancer death rates hover around 90%.

About half of all people whose cancers are treated today survive five years or more, said McKenna, and, though Mullan and McKenna acknowledged some cancer success statistics are the subject of intense debate over their accuracy, McKenna predicted that, by the year 2000, the figure could rise to 75%.

“There are some cancers that are just explosive,” said McKenna. “In lung, for instance, 50% are dead in six months and 80% within a year. We only cure 10% to 12%. But you could have a mastectomy today and live four, eight, 12 years and have a recurrence, or you could live for the rest of a natural life.”

In Mullan’s recent essay, he described an alternative to the construct of five-year survival graphs, reasoning that “survival begins at the point of diagnosis, because that is the time when patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate, and, to some extent, long-term future.”

As Mullan described it in what is, for a medical journal, remarkably moving writing style: “Survival was not one condition, but many. It was desperate days of nausea and depression. It was elation at the birth of a daughter (Caitlin) in the midst of the treatment.

“It was the anxiety of waiting for my monthly chest films and lying awake at night feeling for lymph nodes. It was the joy of eating Chinese food for the first time after battling radiation burns of the esophagus for four months. These reflections and many others are a jumble of memories of a purgatory that was touched by sickness in all its aspects but was neither death nor cure. It was survival.”

As Mullan eventually grew to perceive it, survival has three distinct phases--in medical nomenclature, he argues, they should be called “stages,” just as the phases of the disease process are distinguished. The first phase, acute survival, starts with diagnosis and is dominated by the treatment process and the immediate struggle for life.

Once treatment ends or the cancer symptoms go into remission, the patient enters the second phase, extended survival. In this phase, the quality of life is usually impaired and support groups, like those in the American Cancer Society’s “I Can Cope” program, are valuable. But as physical recovery continues and the patient continues to live, the survival continuum progresses to what Mullan calls the “permanent” survival phase. In the permanent phase, there is little assistance for patients since they seldom are hospitalized and go for months between contacts with their physicians.

“Permanent” survivors are beyond the reach of most existing support groups, and even major cancer centers keep indexes of long-term survivors only sporadically, making it difficult for a person who had breast cancer 15 years earlier, for instance, to find others with the same history with whom to share experiences and problems.

“There is no moment of cure,” as Mullan describes it, “but rather an evolution from the phase of extended survival into a period when the activity of the disease or the likelihood of its return is sufficiently small that the cancer can now be considered permanently arrested.”

But in this phase of permanent survival, there are still many problems--both physiological and psychosocial. A teen-aged boy who has testicle cancer, for instance, is virtually certain to survive the cancer, but he will, just as certainly, be infertile. He may experience some decrease in sex drive, though he will retain virtually full sexual function for the rest of his life. He can reproduce--if his physicians encourage him to put his semen in a sperm bank before therapy begins.

Other Problems

Still other problems faced by survivors are strictly psychosocial. Even today, McKenna and other experts say, cancer survivors face discrimination in employment and obtaining life and health insurance. While legislation has both been passed and is pending in Congress to outlaw discrimination against cancer survivors seeking work, Mullan said such prejudice still exists. It is especially difficult, he noted, for a cancer survivor who is unable to work full time or endure the rigors of a very physical former job.

Blue-collar workers face more difficulties in returning to the work force than white-collar workers, a series of studies by the California Division of the American Cancer Society found between 1980 and 1983. “We still face a situation where people don’t want them (cancer patients) back at work,” said McKenna. “It has improved tremendously in the last 15 years, but it’s a long way from being perfect.

“A good corollary is the AIDS people. They clearly have major problems with employers and this situation is just an exaggeration of what happens to people with cancer. The same thing does not happen to people with heart disease, diabetes or other illnesses.”

Gradually, the survivorship issue is moving into the medical mainstream and steps are being taken to counteract the difficulties survivors face. Progress, though, said Mullan, is painfully slow. It is marked by emergence, for instance, of a newsletter for Hodgkins disease survivors, published by Stanford University Medical Center, which pioneered the radiation therapy that turned Hodgkins and some other cancers called lymphomas from almost certain killers to curable disorders.

The August issue of the newsletter--called “Surviving!”--reported on the births of three babies to women who are Hodgkins survivors. The newsletter began formally a year ago after publishing sporadically for about a year before that. So far, said Stanford’s Fobair, it appears to be the only such publication in its field--devoted, as it is, to establishing routine communication among long-term survivors.

In Orange County, Dr. Rajendra Desai, a cancer specialist practicing in Fountain Valley, collaborated on a videotape featuring personal stories of survivors. The tape focuses on the influence of attitude and mind-set on cancer survival--a still-controversial field.

Someday, Fitz Mullan hopes a national group of cancer alumni may be organized so that survivors can do and commission much of the research that needs to be done on their collective situation.

But, no matter what, Mullan’s cancer will always form part of the backdrop to his life and those of Judy and the kids. It is an inescapable presence. “Every time there’s a cold, we go through this process of, ‘Well, what is this?’ As we get farther away, there are fewer colds,” Judy Mullan said, “and they are less difficult to deal with. But it (the subconscious fear that the cancer could return) is still there.”