They fought a childhood disease and won. But the battle continues for these survivors, who live life . . . : Bearing Cancer’s Scars

Their childhood worries should have been Little League games and senior prom gowns. But fate dealt them a much more profound question: Would they live or die?

They lived.

They lived through long days in hospital beds, through months of the nausea induced by treatments more painful than the disease. Gaunt and bald, they lived through looking different from their schoolmates at an age when fitting in is everything.

Although their illnesses have long since been wrestled into remission, many survivors of childhood cancer still bear such side effects as discrimination at the workplace, rejection by insurance companies and a nagging sense of impermanence.

Carrie Lee, for instance, balks at a milestone that other newlyweds happily anticipate.

“I want to have children, but deep down inside I’m afraid,” she said. “What if I’m not here? Who will take care of them?”

Pete Bastone, a Princeton graduate who hoped to become a doctor, shied away from medical school at the first hint that cancer survivors might not be welcome.

And Susan Nessim, rather than quit her job, took a demotion for the sake of her group health insurance.

“An individual policy for the same coverage would have cost me $3,000 a month,” she said.

An extensive study by the Childrens Hospital of Los Angeles that is nearly complete shows that while 70% of young cancer patients conquer their disease before they reach their 20s, they must battle its stigma throughout their lives.

The nationwide sampling of 1,100 interviewees found that:

* Survivors commonly are discriminated against by employers--whether intentionally or inadvertently. On the whole, respondents annually earned $2,000 less than comparably employed individuals. However, survivors expressed a greater degree of job satisfaction, were no more inclined toward calling in sick, and had fewer disciplinary actions taken against them.

* Sixty-two percent of respondents in the 30- through 50-year-old age bracket were currently married, versus 70% of those in the control group. Survivors had an average .979 children, in contrast to 1.4 among controls.

* Although cancer survivors are generally more interested in health insurance, 20% said they did not have any.

Despite the obstacles, most of the survivors believed that their childhood struggle with cancer made them better adults, observed pediatric surgeon Daniel Hays, who headed the survey.

“They said things like: ‘I learned who my true friends are, I learned the value of life,’ ” Hayes said.

It was a very good year. Pete Bastone was the captain of his football team, the valedictorian of his senior class, and had just been accepted to Princeton University.

Then the 17-year-old boy did something out of character. He failed a test--a lab test.

The biopsy of a strange lump that had developed on his neck indicated Hodgkin’s disease, cancer of the lymph nodes. Today the treatment for Hodgkin’s--one of the more common cancers among adolescents--has a high success rate because of medical advancements. But in 1975, it often proved fatal.

He confronted the disease with his usual resolution.

“I was very positive that I would defeat it, which could be taken as a form of denial,” said Bastone, now 33 and the administrator of Doctors’ Hospital of Montclair.

After a year of radiation and chemotherapy, Bastone’s cancer went into remission and he picked up where he had left off. He moved into a dormitory at Princeton, joined the football team and began making new friends.

“I felt good about myself,” he recalled.

But just around the corner lurked a humiliating setback. His roommate’s father contacted the school health center to express an unfounded fear that Hodgkin’s could be contagious, and health officials complied by asking Bastone to relocate to the infirmary.

“I wanted to burn the place down,” Bastone said.

Bastone refused to budge from his dorm room, arming himself with a physician’s letter noting that he posed no risk to other students. Eventually he received a formal apology from the university’s president, but the episode awakened him to the public ignorance that surrounds cancer.

Unfortunately, it was only his first taste of discrimination. When Bastone, who dreamed of being a doctor, began researching prospective medical schools, an admissions counselor at a top university warned him that he might be considered a poor candidate.

“He told me off the record that medical schools are concerned that cancer survivors could not withstand the stress,” Bastone said. “The dormitory incident was still fresh on my mind, so I decided not to pursue medical school. I would have made a dedicated physician, but when you are continually beat down with reasons why you can’t do things, you get tired of the fight.”

Instead, Bastone earned a master’s in health-care management at UC Berkeley. After college he got an administrative post with a large hospital chain and quickly climbed the corporate ladder--until a recurrence of Hodgkin’s disease knocked him off course.

Upon his return to work after recovering from the second bout, Bastone noticed that his superiors treated him with less enthusiasm.

“The only promotion they offered required transferring to a hospital in a small town out of state,” he said. In frustration, Bastone put out feelers to leave the job he once enjoyed.

His former employer’s loss was his current employer’s gain.

“Ever since I had cancer, I have overextended myself in as many areas as I could,” he said. “I go beyond the call of duty at work to prove to people that I’m as strong as anyone else and that I have the fortitude to succeed.”

That attitude pushes many survivors to try harder--and complain less.

“They want to demonstrate that cancer does not make them less employable than someone else,” said Frances Lomas Feldman, a USC professor emeritus of social work who conducted a study on the employment outlook for survivors of childhood cancer. “They may invest more time and care into work than the rest of us ordinary folks.”

The determination to be accepted as tough enough could explain survivors’ reluctance to make waves at the workplace, noted Dr. Geni A. Bennetts, director of hematology oncology at the Children’s Hospital of Orange County.

“They feel a burden to prove that they can do as well, if not better, than other people, which would minimize their calling in sick and emphasize their punctuality,” she said.

Furthermore, once survivors land a job where they are covered by group medical benefits, they hesitate to seek career-advancing changes and risk rejection by another company’s insurer.

“It’s called ‘job lock,’ ” Feldman said. “Some people are very afraid of getting a new job because of the possibility they would be excluded from a health insurance policy.”

Living under the specter of ostracism can dampen the competitive spirit, said Susan Nessim, founder of the national support group Cancervive.

“Survivors are underachievers,” said the Los Angeles resident, who was stricken with cancer at the age of 17. “Because we don’t want to face rejection constantly, we don’t go after our dreams. We just put our nose to the grindstone and do our job.”

Nessim is an exceptionally attractive woman, but that’s not important to her anymore.

During her carefree days as a popular Beverly Hills High School student, Nessim became accustomed to leaning on her beauty. A malignant tumor in her thigh--and the ensuing radiation treatments and hair loss--abruptly yanked that cushion out from underneath her.

“So much of how I got by was through my looks,” said Nessim, 33. “All of a sudden I didn’t have that. And not only was I not pretty, the way I looked made people uncomfortable.

“Today,” she added, “I focus on the fact that I’m bright--and I get taken very seriously.”

She had just started college at the University of Colorado when the diagnosis of cancer forced her to return home.

“My first taste of independence was snuffed out,” she said.

A year later Nessim went back to college--walking with a limp and her blond hair at crew-cut length, but feeling on top of the world.

“I was proud of having had cancer--like, wow, I can’t believe I made it through this thing,” she said.

Then, as did Bastone, she hit what would become one in a series of snags. Ironically, it was the act of falling in love that opened her eyes to cancer’s stigma.

“My fiance’s family outright rejected me,” Nessim said. “They made it very clear that I was not a good candidate for their son. His father told me: ‘I don’t want my son to be a widower.’ My boyfriend didn’t stand up for me, so I had no choice but to call off the engagement.”

Nessim has continued to run into “walls,” as she calls them. While working as a special events director for a large department store, Nessim said she was passed over for promotions because of her cancer history.

“I was discriminated against four different times in the workplace, but survivors are afraid they’ll make the situation worse if they file a lawsuit,” she said.

When the company cut Nessim’s managerial position during a layoff phase, she took a clerical job for which she was overqualified simply to retain her health insurance.

“Survivors of childhood cancer are especially vulnerable to job lock because we don’t have work histories,” said Nessim, author of the recently published book, “Cancervive--the Challenge of Life After Cancer.”

“People who get cancer as adults often already have an established career or a job waiting for them. Young survivors are just flailing around out there trying to get their first job.”

Other repercussions are even more intractable than insurance difficulties and job discrimination.

Last year Nessim learned that the radiation therapy she underwent as an adolescent destroyed her ovaries.

“Fifteen years later, I’m having to deal with the fact that I can’t have kids because of my cancer,” she said.

Nessim and her husband are considering adoption, but she has mixed emotions about motherhood.

“It’s very hard for me to accept this idea that I’m going to make a commitment to a child for the rest of my life,” she said. “I can’t get over the feeling that I shouldn’t make plans for the future, that I should live life day by day. I can’t see myself getting old--I keep waiting for the other shoe to drop.”

Twenty-three-year-old Carrie Lee is similarly tentative about having children.

“I can understand why survivors have fewer kids,” said the Santa Ana resident, who battled Hodgkin’s disease at 15.

“It’s hard for me to think too far down the line,” said Lee, an emergency room secretary. “My husband will say: ‘In a couple of years let’s do such and such,’ and I’ll think: ‘Who knows if I’ll be here in a couple of years.’ ”

Long-term commitment, Nessim said, is a hazy concept for someone who touched death at an age most children feel blissfully immortal.

“A lot of the kids just don’t get married,” she said. “I think that once people have cancer, they become more self-involved, in the sense that they know time is limited. If something isn’t working in a relationship, the cancer survivor will say: ‘To hell with it, I’m out of here. I don’t have the time.’ That can work for you or against you.”

Another factor in survivors’ lower marriage rate could be the fear of rejection.

“A number of women I dated were scared off when I told them I’d had cancer,” said Bastone, who married two years ago.

“It got to a point where I didn’t want to tell women about my cancer,” he admitted. “I would only allow a certain degree of intimacy; I have scars on my chest from the cancer treatments and, frankly, I avoided taking off my shirt so I wouldn’t have to answer questions.”

Some cancer survivors are left with permanent disabilities, which further affect their romantic relationships. Judy Ryan, 31, suffered a malignant tumor on her left cheek at the age of 16. Radiation treatments disfigured her face and destroyed one eye.

“I used to wonder: ‘Why couldn’t I have gotten one of those internal cancers? Why did it have to be on my face, of all places?’ ” said Ryan, a distribution manager in Glendale. “I know that a lot of guys would not accept my appearance--especially in California, where everyone is so focused on looks. I can’t ignore the fact that my choices are limited, but I believe it’s possible for me to marry and have kids someday.”

Attending school with a bald head makes some children undergoing cancer therapy feel alienated--a self-perception that can carry into adulthood.

“It disrupts the natural pattern of socializing with the opposite sex,” said Ernest Katz, a psychologist at the Jonathan Jaques Children’s Cancer Center in Long Beach.

“I started junior high with no hair,” said Cypress resident Tracy Smith, 24, who was treated for leukemia from ages 7 through 12. “There were all these cute girls with long blond hair who always had boys hanging around them. I thought: ‘Nobody likes me--I look funny.’ I was shy then, and I’m still shy around boys.”

Every year in the United States, about 8,000 new cases of cancer are diagnosed in children. At least two-thirds of those children will live to see adulthood, compared to less than half 15 years ago.

“Leaps and bounds are being made in cancer treatments, and we have a lot of surviving patients nowadays,” said Orange County oncologist Bennetts. “So it’s all the more important to leave these kids with a good education, good work skills, good self-esteem. We owe that to them.”

Over the past decade, doctors have become increasingly aware of the psychological consequences of childhood cancer--which can persist much longer than the disease itself.

“We’re more sensitive to the fact that you can’t separate the mind from the body,” Katz said. “Cancer affects the entire person.”

Of course, it is impossible for the survivors to know the degree to which childhood cancer molded their personalities and destinies. But, while keeping a realistic eye on the adversities, they also speak of lessons learned from standing up to a life-threatening illness.

“I feel I’m a better person than I was before I had cancer,” Nessim said. “I never thought outside myself. Now I live in a larger world. I am more sensitive to people with disabilities, and I can pick up on other people’s pain quickly. I have very rich relationships with my friends and family.”

“What would I have looked like if this hadn’t happened? I cannot help but wonder,” Ryan said. “But I don’t allow myself to dwell on the negative. There are so many people in the world less fortunate than I. And I think I appreciate things more than the average person does--hearing the birds sing, looking up at the blue sky.”

“Having cancer taught me that life is a gift and you should make the most of every moment,” Lee said. “My husband and I don’t have much money, but we’ve made it a goal to take a nice vacation once a year. We probably should be saving for a house, but I’d much rather go see things and have fun.”

Bastone, too, believes “cancer put my priorities in order.”

However, he wryly added: “There are other ways of developing one’s character.”