How Social Media Helps Young People With Cancer

The summer between her sophomore and junior years of high school, Thea Linscott of East Meadows, New York, says her lifelong dance teacher kept asking if she felt OK. Linscott felt fine, apart from a little fatigue, so she was taken aback by the question. But then a strange bump appeared on her shoulder, which a pediatric dermatologist told her to get biopsied.

The bump was a tumor, and Linscott, now 31, was diagnosed with Non-Hodgkin lymphoma. Despite the fact that Linscott has what she calls an amazing support network of family and friends, she'd never felt more isolated.

She insisted on going to her first day of school junior year, but what would have been her second day was her first day of chemotherapy. She lost her hair and was surrounded by a rumor mill that said she was dying.

Years later, after Linscott had survived cancer and was well into adulthood, she stumbled upon a support network that she wishes she'd had as a teenage patient. That was the world of social media and online resources, and specifically, an organization called Stupid Cancer that Linscott now works with.

"This really is the organization I wish I had when I was diagnosed," says Linscott, who's on Stupid Cancer's board of directors. The nonprofit, which MTV calls "the dominant youth cancer nonprofit in the country," has helped hundreds of thousands of cancer patients ages 15 to 39.

Empowering a Hidden Demographic

Stupid Cancer was founded with the premise that although every eight minutes, a person in this age group is diagnosed with cancer, as a group, these patients have been neglected. In 30 years, survivorship has not improved, nor have psycho-social issues, says Matthew Zachary, the founder of Stupid Cancer, a name he came up with because "that's what Bart Simpson would say if he got cancer."

Zachary, too, suffered from brain cancer; a pianist, he was told he would never play the piano again, much less live longer than six months. Not only did he survive, but he began playing the piano again -- for cancer patients, which is how he got pulled into advocacy. For a while, Zachary was the piano man at major cancer conferences. Being around so many patients reminded Zachary of his own experience, which -- like Linscott's --was isolating. So he started Stupid Cancer, which puts on conferences, boot camps, town halls and meetups, in addition to connecting people to hundreds of other support networks throughout the country. Linscott calls it the "yellow pages" for young people with cancer.

One of the group's latest endeavors is "Instapeer," a mobile app that provides people with immediate one-on-one support from peers. This may be one of the most powerful tools yet, Linscott says, since finding a person who is going through exactly what you are forms immediate bonds and can also be informative. Instead of making 50 calls, cancer patients can read someone's blog, she adds.

On Twitter, patients may engage in weekly chats for specific purposes, such as #bcsm (breast cancer social media), #btsm (brain tumor social media) and #ayacsm (adolescent and young adult cancer societal movement), Zachary says. And websites such as whatnext.com, ihadcancer.com and mybcteam.com are modern versions of traditional forum platforms, he adds.

The exchange of information and stories -- which are often empowering to tell -- teaches patients coping strategies, and the anonymity and openness of the online world is perfect for people who need to vent, says Brad Love, an associate professor of communications at the University of Texas in Austin. Love studies the psycho-social outcomes of young adults with cancer and says that social media and efforts like those of Stupid Cancer are an opportunity for improvement, even as disease outcomes stagnate. "We can fight social isolation," Love says, adding that there's even data showing improved outcomes. Love says there is preliminary evidence, largely based on what people are posting on social media, indicating gratitude for social media platforms. "We are definitely seeing positive outcomes to the point that [the evidence] is above purely anecdotal," Love says, adding that the next step is to conduct more nuanced studies about which specific forms of social media are helping people most.

Creating Positive Energy

"I'm so impressed with how positive people are," Love continues. If someone is feeling negative, feedback from other people can help turn that feeling around. "You can learn from other people's experiences vicariously," he adds.

In a broad sense, a strong social media presence helps the group as a whole gain visibility, placing it more prominently on the map of cancer research and treatment priorities, Love says.

And movies like "50/50," a dramatic comedy about a 27-year-old diagnosed with a cancer from which he has a 50 percent chance of survival, have also validated the experience in the general public, Love adds.

A bit of edginess helps, too. Stupid Cancer by name alone carries this, as does another organization called mAss Kickers, started in 2007 by Eric Galvez, who was diagnosed with brain cancer in 2005, just a couple of years after getting his Ph.D. in physical therapy. "I had an eight-hour brain surgery and was in the hospital for two months," Galvez says. "So I had a lot of time to think."

As a state champion wrestler in high school who was just getting into triathlons when he was diagnosed with cancer, Galvez had a competitive spirit that drove the group's name.

"Everyone is really scared when you first hear the words, 'You have cancer,'" Galvez says. "I approach it like a fight or a competition. That makes you more confident."

Galvez's group has a website and is trying to ramp up its social media outreach, but he has mostly focused on lecturing to health professionals to sensitize them about how to approach young people with cancer and attend to their special needs, which often include conversations about financing treatments and the potential long-term effects of treatments.

With his group's edgy name, he also wants to combat the prevailing sad message in a lot of cancer narratives and help reduce the stigma that the disease is an automatic death sentence. "I honestly feel like there needs to be a little more attitude in survivorship," Galvez says. "A lot of ads want to make you cry. I want to make the cancer cry."

Kristine Crane is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at kcrane@usnews.com.