Cancer Leaves Survivors to Fight Against Social Stigma

The group discussion turned to dating.

“When do you tell the other person?”

“Right off, and watch them run.”

“They always say that if he or she really loves you, it won’t matter. That’s crap.”

These people were talking about cancer. Each of them had survived the disease, but they worry about a lingering aftereffect: They believe that most people want nothing to do with someone who’s had cancer.

Twice a month, cancer survivors convene at Valley Presbyterian Hospital in Van Nuys to trade war stories and offer mutual support. The group, Cancervive, which also meets at two other Los Angeles hospitals, was founded by a woman who was cured of the disease more than a decade ago.

“I thought that cancer was going to be the big hurdle. But once I got over that, I found many hidden obstacles,” said Susan Nessim, 30. “I think living is harder than dealing with cancer.”

According to American Cancer Society statistics, almost 1 in 3 Americans will get some type of cancer in their lifetime. Among those who have the disease, 40% survive at least five years after being diagnosed.

In the years following treatment for a tumor in her thigh, Nessim said she lost a series of jobs and watched relationships disintegrate. Her fight against cancer had left her with a limp, and she began telling people it was from a skiing accident.

Three years ago, she decided to fight back. Her family agreed to support her so that she could start Cancervive.

Nessim works with Cancervive full time. Now married, she attends many of its meetings and travels to speak to medical conferences, hospital wards or any other gathering that will listen.

“We have to get the word out,” she said. “It’s hard.”

In a recent survey of some of Cancervive’s 2,000 members and supporters, discrimination in the workplace was listed as the biggest concern.

“I go for jobs, and they ask on the application if you’ve ever had cancer,” said Erica Jorgensen of Van Nuys, a group member who has been working as a temporary secretary while trying to land permanent employment. “They make you take a physical. If you admit you had cancer, you don’t get the job.”

A study by the University of Southern California from 1976 to 1982 lends credence to such complaints, said Frances Feldman, a professor emeritus of social work. Fifty-four percent of the white-collar workers and 84% of the blue-collar workers interviewed said they had suffered some form of discrimination, ranging from being fired to being shunned by co-workers.

An American Cancer Society survey projected that among white-collar workers who survive cancer, 22% will be rejected for jobs because of the disease at some point in their careers. The number for blue-collar workers was 45%.

Nessim and other members have lobbied for federal legislation that would outlaw such discrimination. California has a law against discrimination in employment and housing, as does Vermont. But Cancervive members say it doesn’t always help.

“Laws don’t matter when peoples’ attitudes don’t change,” Nessim said. “When you see promotions constantly going over your head or you lose jobs . . . then you know.”

During Cancervive’s regular 3-hour meetings--which cost members a $10 donation--Nessim and paid social workers who act as group leaders counsel cancer survivors on how to approach job interviews. There are similar discussions regarding difficulties in relationships, dealing with doctors and family and obtaining health benefits.

And there is much heartfelt talk among people who understand each other’s problems.

Fear of Talking About Illness

Peter Bastone, a 30-year-old hospital administrator, discussed his desire to start a family and his fears of a relapse. Jorgensen mentioned that she got a medical form in the mail that asked questions about radiation treatment she received as a child.

“The last question on this thing was, ‘If you’ve had a child, how deformed was it?’ ” Jorgensen, 33, said. “I called my mother and said, ‘Did you know this could happen?’ She said, ‘Yes, but we never told you.’ ”

Many members say they can’t talk about their past illness with family or friends. Nessim says a 34-year-old man who recently joined the group had suffered from cancer when he was 3, but had never discussed it with anyone until he found Cancervive.

“It’s a real safe place to raise issues that you don’t dare say to other people,” said Nicholas Rocca, 33, the social worker who runs the Valley group.

“If it weren’t for this group, I don’t know if I could get on with my life,” said Darlene Kellerian, a 41-year-old office clerk from Van Nuys. “Sometimes I get depressed. So I cry and I come here and talk. I look forward to coming here.”