'Stupid cancer' network offers support to younger survivors.

'Stupid cancer' network offers support to younger survivors.

 

ANAHEIM, CALIF. -- For adolescents and young adults with cancer, news from this meeting was not good. In line with mounting evidence from around the world, studies pointed to disproportionately heavy burdens shouldered by teens and young adults with cancer, in terms of rising incidence, stagnant mortality rates, financial hardship, pain, and psychological distress.

The findings were neither unfamiliar nor surprising to Erin Eloise, a young survivor staffing the i[2]y I'm Too Young for This! Cancer Foundation booth, home to stupidcancer.com, in the exhibit hall.

"We deal with an onslaught of anxiety and depression because we are not just concerned about our health, we are concerned about our whole lives," said the 24-year-old Brooklyn, N.Y., resident, diagnosed as a college student with phyllodes, a rare form of breast cancer.

With its crooked, yellow-lettered logo and bracelets featuring an upraised middle finger, the foundation's decidedly youthful tilt targets the 70,000 patients aged 15-39 years diagnosed with cancer each year.

Besides a prominent Web page, the foundation has a Facebookpage (/stupidcancer), blog (stupid-cancerblog.com), Internet talk radio show (The Stupid Cancer show, live at 8 p.m. ET/PT on Monday nights), Twitter feeds (@stupidcancer.com), community chapters, social mixers, and a sold-out conference, the OMG! Cancer Summit to be held in New York City April 16-17.

As a measure of the organization's reach, the Stupid Cancer radio show recently surpassed 575,000 listeners, reported Matthew Zachary, 33, founder and CEO of the foundation and himself a survivor of medulloblastoma, diagnosed his senior year in college.

For Ms. Eloise, the organization was a lifeline for support, resources, and a level of understanding that seemed out of reach when she was diagnosed with her "grandmother's disease."

"First I tried the breast cancer community, but because I was so young (even in the young breast cancer community) and my cancer was so rare, I just didn't fit in," she said in an interview. "In the end, I just hated the way that most support groups were run, because I didn't identify with 'all things pink' and I didn't want to sit in a circle and cry with people twice my age."

Survivor Jason Mlot, diagnosed at age 17 with a rare, undifferentiated pelvic sarcoma, received his treatment in pediatric centers, surrounded by G-rated videos, "little kid video games," and cartoon figures on the walls. "The doctors and other caregivers were awesome, but there just wasn't a lot for me to work with in terms of age-appropriate support," he said in an interview.

Both young survivors stressed the catastrophic impact cancer had on them at a time of social, educational, physical transition: "the point in time that we are supposed to get a degree, get married, have children, have a career, and become adults ... a time to make all of your silly childhood dreams come true in some realistic form," said Ms. Eloise, who helps to produce the radio show and serves as outreach coordinator for the organization.

Parents closely shelter and support pediatric cancer patients. Older adults often rely on well-established relationships with partners or lifelong friends to help them through the rigors of treatment and beyond. Young adults may find themselves isolated from partying peers, suddenly struggling with body image issues in addition to the normal angst inherent in constructing one's self-image, educational and career paths, and romantic future.

When Mr. Mlot was a high school junior, weight loss and impaired mobility led to a cancer diagnosis, seven courses of chemotherapy, 6 weeks of radiation, a bone marrow stem cell transplant, and months of rehabilitation to restore his ability to walk. Crashing into his adventurous youth came physical limitations, profound financial burdens, educational delays, and fertility fears, he explained.

"You feel like you are the only person going through it," said Mr. Mlot, now 26 years old. "When you are diagnosed at a young age, you have a long time to live with your outcomes," he continued. "Maybe your career goals have been damaged or otherwise changed."

The i[2]y I'm Too Young for This! Cancer Foundation provided a place for both young survivors to find resources on legal issues, insurance barriers, fertility issues, body image, wellness, and relationships.

Ms. Eloise, who retains her dream of becoming a professional actress and dancer, credits the foundation with helping her to sort out her options for insurance coverage. Involvement can be strictly online, through chat rooms, or on Facebook, or can involve direct meetings with other survivors at local chapter events or national conferences, striking back at the isolation many young cancer patients describe.

No relevant financial disclosures were reported by the individuals quoted in this story.

FROM THE ANNUAL CONFERENCE OF THE AMERICAN PSYCHOSOCIAL ONCOLOGY SOCIETY