Cancer’s Long Shadow : Survivors of Childhood Illness May Face Bias on Job, in Relationships

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

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 at an age when fitting in is everything.

Although their illnesses have long since been in remission, many survivors of childhood cancer still bear such side effects as workplace discrimination, insurance company rejection and a nagging sense of impermanence.

Carrie Lee, for instance, balks at a milestone that many 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 had 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 to keep her group health insurance: “An individual policy for the same coverage would have cost me $3,000 a month.”

An extensive study by Childrens Hospital of Los Angeles, which should be completed this fall, shows that although 70% of young cancer patients reach adulthood, 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 people in comparable jobs. However, survivors expressed more job satisfaction, were no more inclined to call in sick, and had fewer disciplinary actions.

* Sixty-two percent of respondents in the 30- through 50-year-old age bracket were 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% did not have any.

Despite the obstacles, most survivors believed their childhood cancer struggle 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.’ ”

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

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

The biopsy of a strange lump 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. But in 1975, it often proved fatal.

“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.

But just around the corner lurked a 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.

When Bastone, who dreamed of being a doctor, began researching 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.

Upon his return to work, Bastone noticed that his bosses 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 left the job.

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.

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.

As a popular Beverly Hills High School student, Nessim was accustomed to leaning on her beauty. A malignant tumor in her thigh--and the ensuing radiation treatments and hair loss--ended that.

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

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

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.”

Then, like Bastone, she hit what would become one in a series of snags. Falling in love opened Nessim’s eyes to cancer’s stigma.

“My fiance’s family outright rejected me,” she 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.”

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.”

When the company cut Nessim’s managerial position during a layoff, she took a clerical job 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.”

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:

“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.”

Long-term commitment, Nessim said, is a hazy concept for someone who has touched death at an age when most children feel 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.’ ” Another factor 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.”

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 last decade, doctors have become increasingly aware of the psychological consequences of childhood cancer.

“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.”

Carrie Lee, a 23-year-old emergency room secretary, said having cancer taught her that “life is a gift and you should make the most of every moment. 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.”