The phone rang, and Vika Gylys looked at the clock.
It was April 18, 2006, 2:36 p.m.
Gylys’ doctor was on the line with bad news about a walnut-sized lump Gylys had found just above her left clavicle.
The lump had been removed the day before, but it turned out Gylys had Stage 2 Hodgkins lymphoma, a cancer of the infection-fighting lymph system, her doctor said.
Cancer, always unwelcome, could not have had poorer timing.
Gylys, 25, was nearing the end of her pharmacy residency, preparing to buy a condo and planning for her September wedding.
“I was at a turning point in my life,” Gylys, who lives in Little Italy, said as she recounted the events of her cancer diagnosis. “Then my life changed forever.”
Gylys is among the 70,000 Americans aged 19 to 40 diagnosed with cancer each year, afflicted at a stage in life when everything is on the agenda except getting sick and, in the worst cases, dying.
Stuck somewhere between Disney-themed pediatric wards and geriatric waiting rooms, these young adults have for several years been called the “orphaned” cancer generation, with limited research and resources targeted at them despite their unique medical and social needs.
Some experts blame that neglect for the lagging progress in five-year cancer survival rates among young adults, which have remained virtually unchanged at 77 percent for 30 years despite strides in other age groups.
But the tide has begun to shift.
In August, the National Cancer Institute and the Lance Armstrong Foundation completed a lengthy report listing recommendations for improving cancer prevention and care specifically among 15- to 39-year-olds.
Next month, the Livestrong Young Adult Alliance, a coalition of groups and individuals dedicated to fighting young-adult cancer, will hold the first of what it hopes becomes an annual meeting in Austin, Texas, to discuss ways to implement the report’s recommendations. Among the recommendations: boosting research of young adult-specific cancers and educating medical professionals and the public about the problem.
“We’ve forgotten over the years to study and pay attention to people in this age group,” said Dr. Archie Bleyer, medical adviser at St. Charles Medical Center in Bend, Ore., and a founder of the Livestrong Young Adult Alliance. “The momentum is finally shifting in the right direction.”
Outside the cancer itself, there are countless concerns facing the young-adult set, including childbirth, health insurance and the worry that telling a date about your cancer might make things awkward.
But towering over those concerns is the fear that the cancer may come back. The prospect of a continually interrupted adulthood dangles menacingly over survivors’ heads, Bleyer said.
That fear became reality for Martin Lyson, 20, who was diagnosed almost five years ago with a brain tumor while he was attending high school at Prosser Career Academy in Chicago.
The tumor–as well as the surgery, chemo and radiation that followed–gave Lyson trouble with his vision, right-hand coordination and walking, requiring him to miss much of his last two years of school.
But Lyson thought he had beat the cancer, and he was steadily improving–“I was almost running, practically,” he said–until he started to feel numbness in his legs last year. An MRI in February showed that he had tumors in his spine.
“I was getting healthier, and I thought everything is going to be good, and I’ll be able to return to my daily lifestyle and can drive a car and run errands,” said Lyson, who lives in Brookfield. “But now I’m not able to.”
Lyson, who had been attending Triton College and hopes to be an analytical statistician, has had to take a break from classes because the chemo has made him too weak.
“It’s like a setback in life, you have to start all over again at the beginning,” he said. “I’m not seeing the bright side at 100 percent.”
For Katie Ahrens, 23, of Uptown, the possibility of recurring cancer means having to worry about health insurance. Ahrens, who was diagnosed with thyroid cancer at 15 and had her thyroid removed, discovered last summer that the cancer was back, having spread to her lymph nodes.
When she turns 24, Ahrens will no longer be covered by her parents’ insurance, so her job options will have to be restricted to positions that can cover her regular checkups. With a degree in art education, Ahrens, who now works without benefits at a daycare, feels limited.
“I’ve always wanted to travel extensively and live that rambling life,” she said.
Cancer’s effect on one’s ability to have children is another major worry among young adults.
Up to 90 percent of men and women diagnosed with cancer during their reproductive years are at risk of becoming infertile due to the surgery, chemotherapy or radiation treatments they undergo, according to Lindsay Beck, executive director of the New York-based nonprofit Fertile Hope.
Men might stop producing sperm, and chemo generally advances the reproductive cycle of women by 10 to 15 years, so they go through menopause early, said Beck, whose group educates cancer survivors on fertility treatments and funding options.
Gylys, who pushed her wedding date to April 28, 2007, worries that the chemotherapy she has every other week will hurt her ability to conceive. To preserve her reproductive system, she has been taking a drug that shuts down her ovaries during her treatment–essentially inducing a temporary menopause–in hopes of protecting her ovarian follicles from damage.
The resulting hot flashes and mood swings add to the lengthy list of ills that come with chemo, including nausea, fatigue, change in taste and weight gain. Gylys, a college athlete who trained for the Chicago marathon two years ago, said she’s gained 20 pounds due to the steroids she has to take.
But one of the most traumatic body changes for Gylys was losing her hair, which she’d find strewn in clumps across her pillow when she woke up in the morning.
At first, she cut her hair short, but she soon found that didn’t help.
“It was like a really old man with a comb-over who tried to pretend he’s not bald,” Gylys laughed.
After much hesitation, Gylys shaved her head in September with the help of her friend Sarah VanderWerf, 27, who was undergoing chemo for non-Hodgkins lymphoma and whom she met at a young-adult support group through Gilda’s Club downtown.
Gylys wears her baldness proudly now.
“I’m so used to it, I love it,” she said. “My fiance says I should always keep my hair like this.”
Knowing you’re not the only young adult facing cancer is key to getting through it sanely, members of the Gilda’s Club group said.
For Gylys, whose final chemo treatment is scheduled for Thursday, being proactive in the cancer fight also has helped.
She raised $2,500 for Gilda’s Club by walking/jogging the Bucktown 5K race this month, and in June she participated in Run for the Rare, a race started by Oak Lawn native Sarah Gordon, also a young- adult cancer survivor.
“Going through this now as opposed to when I’m 70 is kind of empowering,” Gylys said. “Now I can do something with my diagnosis and spread the word.”
———-
aelejalderuiz@tribune.com
– – –
COMMON CANCERS FOR YOUNG ADULTS
The following account for 86 percent of the tumors found in people aged 15 to 39:
– Breast cancer
– Lymphoma
– Germ-cell tumors (including testicular cancer)
– Thyroid cancer
– Sarcoma (bone and soft tissue)
– Cervical cancer
– Leukemia
– Colorectal cancer
– Central nervous system tumors (brain and spinal cord)
[ Source: Report of the Adolescent and Young Adult Oncology Progress Review Group, a partnership between the National Cancer Institute and the Lance Armstrong Foundation. ]
