Strength in numbers

At 25, Marypat Siess is usually up for a party. So when she declared one recent night at 11 that it was time for an impromptu dance competition, no one who knew her was particularly surprised.

The possible wrinkle: At the time, she was hospitalized at Children's Hospital of Philadelphia, where she has been treated for recurring leukemia since age 6.

Nonetheless, Siess had her party, though it was mostly hospital staff who attended.

"I'm an adult. I don't have a bedtime," Siess said, happily recounting the evening.

Yes, it was fun. But it also was important.

A cancer diagnosis for adolescents and young adults - known in medical circles as AYA - brings with it challenges both social and medical.

Survival rates for this population often are worse than those for children and older adults. Researchers blame numerous factors. Diane Robertson of the ECRI Institute in Plymouth Meeting cited fewer studies and clinical trials to help customize treatment protocols for cancers that behave differently in this age group.

Robertson added that aside from being in a "no-man's-land" when it comes to research, there can be lags in diagnosis because young adults may ignore symptoms or be inconsistent with treatment because they are distracted by school, new relationships, new careers. Plus, young people tend to be particularly unwilling to believe they could be seriously ill.

Put it all together, and researchers say it's clear that patients like Siess need a different approach - up to and including more attention to social life.

The National Cancer Institute, National Cancer Comprehensive Network, and the Institute of Medicine have all issued guidelines within the last year supporting specialized AYA treatment.

Since 2012, the U.S. has begun adopting a model from the United Kingdom that incorporates AYA-specific social and educational programs along with medical treatment. Studies in both countries are underway to evaluate health outcomes.

Children's Hospital took note nearly a decade ago of the disparity in survival rates of adolescents and young adults compared with children and older adults. It touts an evolving AYA model that keeps patients socially engaged while in treatment and savvy about survivorship issues when it is over, according to Lamia Barakat, director of psychosocial services who heads the evolving program.

Already there's the Wednesday Society, a social group Siess helped found last year as part of a patient-led task force. The group of a dozen or so has had movie nights in the hospital, painting parties, and, of course, dances. The Wednesday Society helps young adult patients admitted to the hospital or coming in for follow-up have something fun to do with others in their age group.

Once treatment ends, Barakat says, survivors must cope with the possibility of secondary cancers, heart and lung side effects, and fertility complications.

"I was at a crossroads when I was done. Do I go back to a job I didn't like or get my master's degree?" says Cara Scharf, 29, who chose graduate school and a new job in Philadelphia in 2013 after surgery for breast cancer.

Scharf enjoyed a well-established network of young cancer survivors in Washington, where she had surgery. But she couldn't find the same when she moved to Philadelphia.

Her follow-up oncologist at Penn Medicine's Abramson Cancer Center referred her to a group that met at 2 p.m. Mondays, which didn't fit Scharf's work schedule as a museum administrator in North Philadelphia. She turned to the Internet and found a happy-hour meeting on StupidCancer.com, a go-to site for adolescents and young adults across the country.

Her circle of friends grew and she began posting regularly to a StupidCancer chat board. That's how she met Dakota Fisher-Vance, 26, of Havertown, who was diagnosed at 22 with a rare colon cancer and a rare soft-tissue tumor thought to be an offshoot of the colon cancer.

"I didn't want to admit I was seriously sick. I wanted my same friends - not cancer friends," she said. "Then I realized I needed to be with people who understood what had happened to me and were comfortable with me."

Fisher-Vance and Scharf became fast friends. They laugh simultaneously when Scharf quips in mock envy that she feels "less special" because her cancer isn't as rare as Fisher-Vance's.

Not the kind of humor friends who haven't shared their experiences can understand.

Jenn Velez, 27, of Glassboro, was hesitant about joining a cancer survivors group but was talked into meeting for coffee in February.

"I imagined a lot of crying. But it was amazing! We laughed for three hours," said Velez, a nurse at Cooper University Hospital in Camden. She enjoyed her second meet-up with many of the same people last week at the Juice Room in Germantown.

Diagnosed and treated in 2011 for a head and neck cancer, Velez says one of the best things about socializing with other survivors is she can say "dark, humorous things about my cancer and not make them cry."

For Sean Meehan, 26, connecting with other young adult survivors was worth the 90-minute drive from his home, even if he was the only man in the group. He said undergoing treatment for testicular cancer made it difficult to find and keep a job, though he's now happily employed at Shady Maple Smorgasbord in Lancaster County.

The Juice Room meet-up was sponsored by the Young Adult Cancer Connection (YACC), founded this year by Scharf and Fisher-Vance. The group held the city's first "CancerVention" in March, billed as an opportunity for young adults to "meet your cell mates." More than 250 survivors and their families went to the conference to learn about issues from work/life balance to fertility to employment to relationships.

Once opposed to having "cancer" friends, Fisher-Vance is not only happily inundated with them, she is dedicated to them.

A premed graduate from Bryn Mawr College, Fisher-Vance considers Philadelphia's YACC a path to getting AYA-specific oncology education and training worked into medical school curriculums. She rounded up volunteers for CancerVention from premed programs. Her hope: that the "next generation of doctors will take this experience with them when they go to med school."

At the Juice Room, after Fisher-Vance confessed to watching Chasing Life, a TV series about a 24-year-old woman who keeps a cancer diagnosis secret, the conversation turned to how TV portrays the disease.

"It was the same thing in Breaking Bad and The Big C," she pointed out. "They don't tell anyone. Is that realistic?"

Not at all, the group said, agreeing that sharing a cancer diagnosis is the first step in surviving it.