Social Service Agency Strives to Help Young Adults Cope With Cancer

When Selma Schimmel discovered a lump in her breast at the age of 28, she was horrified. Her mother and an uncle had just died of cancer within the previous 2 years, and her grandmother had died of the disease before that.

She wasted no time visiting her physician, who informed her that she was too young to have breast cancer. Later, a gynecologist and radiologist echoed that statement.

Instead of feeling relieved, Schimmel became increasingly panicky at the thought that nobody would listen to her. Four months later, she persuaded her doctor to perform a biopsy, and cancer was found.

Schimmel had a lumpectomy, and went through 9 months of radiation and chemotherapy. That was followed by surgery to remove her lymph nodes and then a third operation to remove a benign tumor from her other breast.

Now, almost 6 years later, Schimmel is free of cancer. But she carries more than the physical scars of the surgeon’s blade. Schimmel recalls the emotional trauma as devastating. And like any cancer patient, she worries that the disease could return.

Instead of dwelling on the negative aspects of her ailment, however, Schimmel founded and manages Vital Options, a Studio City social service agency and support group that caters to the unusual needs and concerns of cancer victims between the ages of 17 and 40.

Unexpected Ailment

“Younger people never expect to get cancer. And because it is a life-threatening disease, it brings up all kinds of issues about body image, dating, sexuality, reproduction, school and work. These are a completely different set of concerns than someone 50 or 60 years old has to deal with,” she said.

Added Rachel Hernandez-Myer, a 32-year-old Moorpark woman who has had three bouts with cancer since she was a teen-ager: “It all seems very unfair. This is supposed to be a time of your life when you’re young and vibrant, trying a lot of new things and going a lot of places. Sometimes, you wonder if you’re going to get to do the things you’ve dreamed about.”

Vital Options--which, according to Schimmel, is the only group in the nation addressing the problems of young adults with cancer--offers four programs a week that examine physical and psychological aspects of the disease and how they affect people.

There’s a general support group, psychotherapy, family sessions and a post-treatment group. In addition, the 4-year-old organization provides occasional workshops that have used art, music and dream analysis, among other things, to help those with cancer better understand their illness. (The age boundaries are not strictly enforced, Schimmel said. “It depends more on where the person is at in their life and the life style they lead.”)

Most Are Referred

Five licensed therapists lead groups of six to 14 people. Most who come to the center are referred by their physicians or social service agencies. A few read notices posted on bulletin boards of their hospitals or hear about it from other patients.

And the 500 to 600 who use Vital Options come from as far away as Orange and Ventura counties, Schimmel said.

“We try to communicate the idea that cancer isn’t an automatic death sentence,” she said. “It means you have to work harder at living. There’s no way to escape it once you have had the disease; you have to learn to cohabit peacefully with the memory of it.

“Hopefully, after one has survived cancer, he or she will use it as a learning experience, a motivation to change their life style and attitudes for the better and to approach the world with greater understanding.”

Michael B. Van Scoy-Mosher, an oncologist at Cedars-Sinai Medical Center in Los Angeles, describes Vital Options as “an invaluable asset,” saying: “I have seen several instances where the program made the difference between patients living and dying.”

Those who attend the sessions say the interaction and understanding they receive provide a strong motivation to fight the disease. “I can’t describe how good it made me feel to walk into a room and see others who shared my experience,” said Hernandez-Myer. “I have made so many good friends. There’s no fooling around. We talk about major things, like living and dying. These are people who are in the trenches with you.”

Before coming to Vital Options, Hernandez-Myer attended several support groups in Ventura County. “They were very worthwhile groups, but I really didn’t feel as though I belonged,” she said. “They were all talking about who they would leave their house to and how they would deal with their grandchildren. I just couldn’t relate.”

‘Your Life Stops’

Bill Magee, 24, was diagnosed with cancer 2 years ago. After having a tumor removed, he underwent chemotherapy and radiation therapy and later had a bone-marrow transplant. “With cancer, your life stops as soon as you’re diagnosed. It doesn’t start again until you receive your last treatment and have recovered. It takes a lot out of you.”

After being told that he was free of cancer, Magee decided to attend Vital Options meetings. “It wasn’t until afterwards that I felt I needed some interaction and feedback. I also wanted to share my experience with others.”

Magee’s problems are typical of those experienced by young cancer victims. He has been in and out of college during the last 5 years. He still lives at home with his parents and hasn’t been able to work during much of that time. And although his girlfriend and his parents have been highly supportive, “nobody can understand the loneliness and isolation of cancer unless they have had it,” he said.

Indeed, Schimmel pointed out, many stricken with cancer wind up losing friends, jobs and, occasionally, the motivation for living.

An equally serious problem, said David Wellisch, chief of adult psychology at UCLA’s Neuropsychiatric Institute and clinical director for Vital Options, is that “it’s devastating for a young person who is trying to develop a sense of autonomy to have to move back home and quit their work.”

But even those who have overcome the disease face myriad concerns.

Those who are single and dating often don’t know when it’s appropriate to let the other person know that they have had the disease, or that they wear a wig to cover the baldness that temporarily results from chemotherapy.

Those who want to have children must think about the possibility of getting cancer again and leaving the child motherless or fatherless, or, as a result of the treatments, worry about becoming sterile. (According to the National Cancer Institute, sterility is 15% more common among cancer survivors than among other adults.)

Moreover, many who apply for jobs are illegally discriminated against because of their medical history, Schimmel said.

Insurance Unattainable

In fact, Schimmel cannot even obtain medical insurance for her condition, even though she is considered cured after 5 years of being free of cancer. “There’s a double standard,” she noted. “People are told that cancer is treatable and curable, but then they can’t get health coverage and are treated as if it hasn’t been cured.”

Attitudes, she says, have lagged far behind medical progress. Whereas cancer translated into an almost automatic death sentence a quarter century ago, today, 63% of young cancer patients live at least 5 years after being diagnosed, according to the National Cancer Institute. That’s 40% better than survival rates in the early 1970s. Not only have treatments improved, doctors are able to detect cancer at much earlier stages.

Schimmel started Vital Options out of her own urgent need to meet others with cancer. In 1984, after her own treatment, she resumed her study of sociology at UCLA--where she began lecturing on cancer in some of her classes. She was amazed by how many others had the disease. So she began putting together a board of directors and an advisory panel and filed for nonprofit status, and Vital Options was born.

Financing comes mostly from corporate sources, grants, private contributions and an annual dance, although making ends meet remains a constant struggle. AMI Medical Center of North Hollywood has recently taken the center under its wing, providing thousands of dollars through annual 5-K and 10-K runs.

Although Schimmel does not lead therapy sessions or provide clinical advice, she is more than just a figurehead. She often puts in days of 12 to 16 hours and constantly visits those bedridden with cancer. What’s more, she wears a beeper and is available around the clock to anyone who is distraught or who desperately needs someone to talk to.

“The therapists are here so we can run a professional organization. But there is no replacement for someone who has been there, who has had cancer and can share the experience,” she said.