Young adults with cancer gather at OMG! conference in Las Vegas

I sit in a hotel conference room with 45 or so men, aged 20 to 50 or so. Some are in treatment right now, a few will be for the rest of their lives, and then there are a handful who were diagnosed a few decades ago, like me. Among the diverse diagnoses are men with testicular cancer, lymphomas, brain cancers, sarcomas and leukemias. And we seem to hail from all walks of life, an ex-steel worker with broad shoulders occupies a seat a few feet away from a doctor, there's an elite athlete who works for a tech startup next to a guy who works in a bowling alley. There's even a Hollywood actor in the mix. For the most part, we don't look ill and this could be a support group for anything. But it isn't anything, and this is an unusual meeting. I write this with some confidence after attending over 300 cancer-related conferences in the past 14 years.I've never sat in a room with this many young adults with cancer in one place, especially not men. And we are vocal. With virtually no prompting, we talk about body image issues, bouts with depression, anorexia and post-traumatic stress, when to "come out" to potential romantic or sexual partners, and applying the resilience found in cancer to our occupations. While a few of the comments are superficial, for the most part these men have come to work and compared with other early support groups I've witnessed as a young adult survivor/psychologist, the ratio of substance to the superficial is weighted heavily on substance.Perhaps equally surprising is the complete lack of machismo in the room. There's no posturing. I used to supervise group therapy run by psychiatry residents, and I was always grateful to have people who had been in alcoholics anonymous in the groups because they tend to cut through the superficial and focus on the issues quickly. This is what the room feels like. "I've wrestled with anorexia and body image issues," one guy says. Another talks about how the disease obliterated his medical training. Others talk about how they'd handicapped themselves, thought of themselves as flawed and unnecessarily dampened their own ambitions or romantic expectations. The group was one of many offerings at this past weekend's OMG! Conference sponsored by Stupid Cancer, a non-profit dedicated to young adults (women and men) diagnosed between ages 20 and 40. Over 450 young adults from around the country (and a few other countries) attended.When I was diagnosed, I knew one other guy, my age, who'd had cancer. He was terrific, but we spoke by phone only twice during my first year of treatment. The waiting rooms and chemotherapy suites where I was treated in Hartford was a 60s and up crowd. It was like dropping down in a creaky elevator shaft into a dangerous coalmine and only speaking to one other guy who had been down there. Even though I was diagnosed more than 25 years ago, the treatment environments for many, if not most young survivors, hasn't changed much. There are only a few centers nationwide that have young adult clinics. Perhaps this is why doctors are still not telling enough patients about fertility options, not referring us to clinicians who can address the body image and career fears we face, nor doing enough to help us navigate the long-term effects.So, young adult survivors are trying to step up and fill those gaps. There were group sessions on genomics, chemical exposure, advocacy, meditation, managing anger, healthcare reform, panels for specific disease, nutrition and living with metastatic disease, among others. And perhaps more important, there was fun: scavenger hunts, night club dancing, bowling night and pool parties.Perhaps the most remarkable aspect of the conference to me, having been active in the cancer community for 15 years or so, are the people who dedicate time and energy to this cause. Many of the activists are people who suffered when they were patients from a lack of access to other young survivors who might have helped them. Amber Vance, a young woman with Hodgkin's disease was never informed about fertility options when she was diagnosed and now dedicates significant time to getting young survivors together for meet-ups. Alli Ward, a main organizer of the conference, has lived through multiple relapses and gave a "Chronic Cancer" break-out session focused on living with metastatic disease. Jonny Imerman, a testicular cancer survivor, who has created an elaborate, national peer-to-peer mentorship program for young survivors based out of Chicago. And there were many more. There are camps, river trips, peer mentoring programs, fertility foundations, disease specific foundations and nutrition experts.I did a talk at the conference this past Sunday and that evening, a cascade of social media followed, there were 30 new Facebook friends, a gaggle of new Twitter followers and photographs dancing across the electronic ether. The cancer coalmine is still terrible. But going down now, with a lifeline to these volunteers and organized cancer warriors, would have been better. Dan Shapiro is a psychologist and chair of the Humanities Department at the Penn State College of Medicine. He's written three books including, Mom's Marijuana (about his cancer experience) and "And In Health: A guide for couples facing cancer together." His writings about the patient experience and physician-patient communication have appeared in the New England Journal of Medicine, the New York Times, JAMA and he's been featured on National Public Radio's All Things Considered and Science Friday, among others.