Like many people her age, Lindsey Salsberry, a gifted student and former high school track athlete, has ambitious plans. But a rare, deadly form of cancer has forced her to put her dreams on hold.Robin Rombach, Post-Gazette
Lindsey Salsberry, 21, of Wellsville, Ohio, jokes with her doctor, Dr. Yatin M. Vyas, during a checkup at Children's Hospital in Oakland last month. Dr. Vyas has directed her treatment for a rare form of cancer.
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In the past 18 months, Ms. Salsberry, 21, has had grueling rounds of chemotherapy, radiation treatment and surgery for a type of sarcoma that spread from her right leg to her lungs. She was back at Children's Hospital earlier this month for another surgery to remove recurrent lung tumors.
Dealing with a life-threatening illness has brought other challenges for Ms. Salsberry, of Wellsville, Ohio, about 55 miles west of Pittsburgh. She lost her long dark hair to chemotherapy. Cancer surgery on her leg left her unable to run.
Still, "she's never really cried, never had any 'Why me?' moments," said her father, Rick Salsberry.
Because of her young age, she is more likely to withstand and respond to the aggressive treatment, her best chance for battling an often-fatal cancer, said Dr. Yatin M. Vyas, her oncologist and an assistant professor at Children's.
The hospital and other centers are developing specialized programs for older teens and younger adults, who have lagged behind other demographic groups in improved cancer survival.
Often, those cancer patients "fall through the cracks and don't get the best therapy," said Dr. Peter Shaw, who leads the hospital's Adolescent and Young Adult Oncology Program.
Since the late 1970s, when older teens and young adults had better prospects for cancer survival than most age groups, survival rates for those patients have stagnated, even as they have improved for older and younger patients, noted a recent report by the National Cancer Institute and the Lance Armstrong Foundation.
"Cancer risk and adverse cancer outcomes have been underrecognized in this population," noted the report, which attributed the lack of progress to a number of factors.
Adolescents and young adults are more likely than other groups to be uninsured, which could delay or restrict their access to care.
They and their health care providers may be slow to suspect cancer.
And once they are referred for cancer treatment, they too often "fall into a no-man's land between pediatric and adult oncology," the report noted. They could be seen by a variety of oncology specialists, for example, and there is little comparative outcome data to suggest the best approach to care.
Most are treated by community health care providers rather than at cancer centers, limiting data collection that would support research. And unlike younger cancer patients, few participate in clinical trials, considered a main reason for dramatic improvements in cancer survival among children.
Older teens and young adults also may need fertility counseling or other services that might not be addressed by programs for younger or older patients, the report noted.
It recommended efforts to better identify the distinguishing characteristics of adolescent and young adult cancer patients and to promote research and access to quality care.
Officials met recently to discuss ways to move forward on the report's recommendations, said Dr. Brandon Hayes-Lattin, who cochaired a work group that contributed to the report. Strategies include analyzing past studies for the effects of cancer treatment on specific age groups, he said, and conducting awareness campaigns among health care providers and the public.
Dr. Hayes-Lattin, medical director of the Adolescent and Young Adult Oncology Program at the Oregon Health & Science University Cancer Institute, said less than a dozen similar programs have been organized nationwide.
The Children's Hospital program, which began in July, is targeted to young people ages 15 to 21. It offers access to clinical trials for adult and pediatric cancers, either through Children's or the University of Pittsburgh Cancer Institute.
The program also provides support groups and activities geared to younger people, including tutoring services and school counseling. Consultation on sperm banking and female fertility preservation is available through a collaboration with Magee-Womens Hospital.
While many of the services were available before, they have become more formalized under the new program, Dr. Shaw said.
Lindsey Salsberry's battle with cancer began in the spring of 2005, when she was in the second semester of her freshman year at West Virginia University.
She had pain in her right leg, and doctors found she had a four-inch sarcoma on her sciatic nerve.
Surgery to remove the cancer left her with impaired movement and sensation below her knee, requiring her to wear a brace, her father said. That summer, she also had 30 radiation treatments.
An inherited condition known as NF1, a type of neurofibromatosis, made her more susceptible to developing this highly aggressive cancer, Dr. Vyas said. Both her father and grandfather developed tumors related to NF1, but they were benign.
Despite her health problems, Ms. Salsberry, the salutatorian of her high school class, made the dean's list during both of her semesters at WVU, her father said.
But doctors soon found that Ms. Salsberry's cancer had spread to her lungs.
They referred her to New York's Memorial Sloan-Kettering Cancer Center. That center, in turn, sent her to Dr. Vyas, who had trained there and later moved to Children's.
Prospects for patients with her type of cancer are usually grim, said Dr. Vyas, who began an aggressive course of multimodality therapy.
She had three rounds of chemotherapy late last year, followed by surgeries on each lung in January. Some tumors removed from her lungs were nearly the size of golf balls.
She then had three more rounds of chemotherapy, one of them accompanied by radiation to both lungs, her father said.
"The radiation was probably the hardest," he said, noting it left her jaundiced and temporarily unable to swallow.
Dr. Vyas said her medical team did its best to identify and remove every possible tumor, utilizing PET scans and other sophisticated imaging techniques.
Still, the tumors came back. Dr. Timothy Kane removed a tumor from her left lung in August and three more from her right lung earlier this month, her father said.
Additional radiation to her lungs is no longer possible and more chemotherapy is unlikely to help, Dr. Vyas said. So more surgery is likely if the cancer recurs in the lungs or other sites.
While the statistics for achieving long-term remission for her type of cancer are not encouraging, Dr. Vyas said they would be better if more centers treated such cancers aggressively.
Mr. Salsberry said his daughter, meanwhile, is looking ahead. She hopes to resume her college career by transferring to Ohio State University next spring. Someday, she hopes to become a doctor.
"Lindsey keeps us positive," he said. "She always had that drive to do the best she could do."
Joe Fahy can be reached at firstname.lastname@example.org or 412-263-1722.