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Cancer's most isolated patients

For decades, the needs of adolescents and young adults with the disease have been slighted. That's beginning to change.

October 26, 2011|By Anna Gorman, Los Angeles Times
  • Erica Martinez, 22, has been treated for cancer since she was 15. She sees the need for more support for young people with cancer. "I havent found someone who lived through this and is OK."
Erica Martinez, 22, has been treated for cancer since she was 15. She sees… (Anne Cusack / Los Angeles…)

She has had four surgeries to remove her thyroid, parathyroid and vocal cord nerve, along with muscle and tissue.

Once a year, she goes to a hospital and swallows a radioactive iodine capsule to attack the remaining cancer cells — and then remains in isolation for four days. During what she calls her quarantine, she can't touch — or even be in the same room as — anyone else. The treatment causes soreness, swelling, nausea and headaches.

Each year, as the ordeal approaches, she scans the Internet for support groups. Once, she reached out to another cancer patient, only to discover that the woman was 64.

Erica Martinez is 22.

"No one can really relate to what I am feeling," she said. "I can't find anybody else who has a similar case to me."

Physicians and researchers acknowledge that for decades, the needs of adolescents and young adults with cancer have been slighted. They frequently receive inconsistent treatment and follow-up care, and clinical trials and research focused on this age group have been scarce, according to oncologists and a report by the National Cancer Institute.

More than 72,000 adolescents and young adults — defined by the cancer institute as ages 15 to 39 — are diagnosed with cancer each year. For many, the disease is detected late for various reasons: Patients don't recognize the symptoms or have no health insurance, or the cancer is initially mistaken for something else.

That may help explain why there has been very little improvement in cancer survival rates among adolescents and young adults, even as the rates for childhood cancers have risen steadily over the last few decades.

On top of the physical burdens of the disease, many young adults feel a painful isolation.

"This was the lost generation," said Dr. Stuart Siegel, director of the children's center for cancer and blood diseases at Children's Hospital Los Angeles. "They were thrown in with kids or adults depending on their age."

Now, physicians nationwide are realizing they can no longer ignore this population. The Journal of Adolescent and Young Adult Oncology, the first peer-reviewed journal devoted to this age group, began publishing this year. Doctors are receiving better training in how to diagnose and treat young adults, and the number of clinical trials and support groups addressing their needs has increased.

A new film, "50/50," about a 27-year-old man diagnosed with a rare spinal cancer, has brought further attention to this long-neglected cohort.

In the spring, USC and Children's Hospital Los Angeles plan to open a center devoted to adolescent and young adult cancers, one of several such facilities established across the country in recent years.

"There is a growing appreciation for the differences and unique needs of young adults with cancer," said Dr. Brandon Hayes-Lattin, a cancer survivor and head of the adolescent and young adult oncology program at Oregon Health and Science University.

In addition to studying the biology of cancers and developing more effective treatments, doctors are trying to meet patients' social and emotional needs. Many adolescents and young adults are trying to form relationships, finish school, begin careers and have children while fighting the disease.

"A cancer diagnosis is really disruptive for many of those things in a way that it isn't for young kids or older adults," said Dr. Rebecca Johnson, medical director of the adolescent and young adult oncology program at Seattle Children's Hospital.

Wrong diagnosis

Thyroid cancer is one of the most common among young adults, along with ovarian and testicular cancer, melanoma, lymphoma and leukemia.

Martinez first noticed the swelling in her neck when she was 13. Her mother took her to a doctor, who diagnosed cat scratch disease and prescribed antibiotics. Two years later, Martinez started feeling lumps and went back. This time, her doctor referred her to a specialist.

Surgeons operated to find out what was wrong and discovered the cancer, which by then had spread to her lungs.

"I came out after surgery and everything was different," said Martinez, who lives in Alhambra with her parents.

She was transferred to Children's Hospital Los Angeles and spent much of a summer there. Most days, she couldn't lift her head or speak clearly. She felt out of place, surrounded by young children, TV screens showing Disney movies and walls decorated with butterflies. Martinez read fashion magazines and rarely left her room.

"It was a happy place to be, but it wasn't catered to my age," she said.

After she was discharged, Martinez felt too sick to return to Alhambra High School. But she was determined to graduate and did two years of independent study to earn her diploma.

When she turned 21 and was no longer eligible for children's health coverage, she started receiving treatment at City of Hope in Duarte. She didn't feel she belonged there either.

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