If you were diagnosed with breast cancer under the age of 40, then Stupid Cancer’s OMG! Cancer Summit for Young Adults might just change your life.
An oncology conference and social networking event like no other, the OMG! Cancer Summit draws hundreds of young adults diagnosed with all types of cancer for a multi-day experience. The Summit began in 2008 as a 1-day event in New York City (OMG2008), and has since grown into a 3.5-day national conference at the Palms Casino in Las Vegas. This year, at least 450 attendees are expected to attend the event (April 24-27) — and there’s still time to register.
When you’re a young adult diagnosed with cancer, it’s not always easy to find people — particularly people your age — who can relate. After my diagnosis at age 30, I remember attending a local young adult support group. This was in 1998, before the Breastcancer.org Discussion Boards, YoungSurvival.org forums, and other online support groups existed. So in this young adult support group, besides me, the youngest person in attendance was 40. The age range went up from there. I can say that it was absolutely helpful to be in a space with others going through it; there’s a lot of power in connecting this way. At the same time, there were many women dealing with issues very different from my own at that time in my life.
While we were experiencing a lot of the same treatment side effects, I was still, in many respects, a kid. It was complicated. Having my breast rebuilt, being tired a lot, and losing my hair made me feel about 100 years old. It sometimes felt like I was on another planet among my peers, many of whom were musicians in bands staying out ’til all hours of the night. They were wonderfully supportive, but there was the inevitable cutoff point in experiential understanding — and we all knew it. I wasn’t really 30 anymore, but I wasn’t really 40 or 50 either. Everyone in that young adult support group meant well and we did connect on some level, but I’m sure they also perceived me as somewhat of a sideshow interruption.
Now nearly 16 years out and having been diagnosed with a second (thankfully minimal) breast cancer at age 44, I could attend that same support group and respond in a more balanced way. Still, that experience at age 30 is a part of me. And I’m certainly not alone. According to the National Cancer Institute, 70,000 U.S. adolescents and young adults are diagnosed with cancer each year.
Jenn Fickes, diagnosed with an aggressive stage II triple-negative breast cancer at age 37, lives in Denver, Colorado. After many rounds of chemo, doctors determined that the cancer was not responding. She later underwent radiation and finished last year, and has two more surgeries to come. “I didn’t know anyone my age going through this at any point during my chemo or surgery — no one. I did go to a support group at my hospital; they were warm, lovely, super-nice older women. But less than half had had chemo. I’m also very sensitive to people feeling sorry for me. If someone started crying for me, I’d tell them to stop. I loved all the women I met, but it just wasn’t what I needed.”
Matthew Zachary, a concert pianist and composer, was 21 when he was diagnosed with pediatric brain cancer. Told he might not survive 6 months, he defied the odds and went on to found Stupid Cancer in 2007, a New York City-based nonprofit whose mission is to empower anyone affected by young adult cancer.
Stupid Cancer offers some great programs for young adults:
- Comprehensive links for financial assistance, other young adult organizations, blogs, retreats and camps, and supportive literature
- The Stupid Cancer Show, a weekly online radio broadcast/podcast hosted by Matthew Zachary and Annie Goodman, who was diagnosed with triple-negative breast cancer
- Stupid Cancer Meetups in 40 states and three countries
- Social media advocacy on Facebook, Twitter, Pinterest, and Instagram
- The OMG! Cancer Summit for Young Adults
In the fall of 2013 I attended OMG2013/east, a 1-day event, for the first time. It was a day of networking, expert speakers, panels, exhibitors, and a cocktail reception with a deejay and dancing. Almost as soon as I arrived, a 25-year-old attendee introduced herself to me in the hallway. She had stage III breast cancer. She didn’t know anyone, but she was excited to meet people. Throughout the day I met many more women and men in their 20s, 30s, and early 40s in various stages of treatment and recovery for cancers including breast, ovarian, cervical, brain, Hodgkin’s, non-Hodgkin’s, testicular, sarcoma — the list goes on. The most palpable feeling in the room was that of multitudes of people finally, for the first time, meeting others in their age range who understood much of what they’d been through. High-fives, laughter, surprise, some tears. First-timers and others who were reuniting. For me, this was unexpectedly cathartic. It was like being able to go back and re-do my experience in a much-needed way. I just wasn’t prepared to discover how much I still needed it.
I spoke with Alli Ward, vice president of programs and executive producer of the OMG! Cancer Summit about the upcoming summit in Las Vegas. “While OMG/east is great, it’s just a slice. Things are exponentially different in Vegas. It’s 3.5 days, a choice of 30 breakout sessions, more than 50 speakers, exhibitors, evening activities — it’s just huge.”
Ward joined the Stupid Cancer team after being diagnosed with stage IV ovarian cancer in 2007. In 2009, she was told she only had a few months to live. As her Stupid Cancer bio says, Ward is now 5 years past her “expiration date,” planning and producing the OMG! Cancer Summits each year.
“The Summit has three objectives,” she says. “The first is connection to others in the same situation who really ‘get it’ — attendees with different diagnoses, a caregiver who hasn’t met another young adult caregiver, for example. Spouses. Individuals with the same types of cancers, sometimes rare, who get to meet. The second objective is education, including plenaries, keynotes, and breakout sessions addressing all types of issues from genomics and the environment to psychosocial effects and survivor guilt, living with chronic illness, long-term effects, as well as sessions just for caregivers. And this year we have a whole wellness track that includes meditation, nutrition, and exercise during and after cancer.
“The third objective,” Ward says, “is advocacy: what’s out there in resources and community. We have over 45 exhibitors providing services to the young adult cancer community. Some are corporate; some are cancer centers and researchers who want to find out what the young adult population needs. Learning to speak for others like you in your community.”
April’s summit includes keynote speakers Roni Zeiger, M.D., CEO of SmartPatients (formerly Chief Health Strategist at Google) and Daniel Shapiro, Ph.D. — psychologist, professor, author, and young adult Hodgkin’s lymphoma survivor. Also on the agenda: a pool party, a bowling party, a film screening, dance party, and pub trivia.
What if you aren’t sure you can afford to go? “You can participate in something we call The Players Club, which is an individual fundraising program that helps support the event,” says Ward. “This way, you can fundraise online and receive incentives at the same time, one of which is up to $600 in reimbursement for travel expenses. We found that people really liked this because instead of asking, ‘Can you help me buy a plane ticket?’ it’s more like ‘Can you help support this organization and also help me attend this event?’”
Jenn Fickes read about the 2013 OMG! Cancer Summit about 2 weeks before it took place. “I didn’t know anyone who was going, but I booked a ticket anyway. I decided I’d work as a volunteer. And on the first day, I met a couple hundred people. I talked to everyone I could, and I was blown away before the conference even started because here were all these people who understood what I was going through. I was just so amazed at how good it was to be around these people. That first night, I met so many people and several of them I’m still really close with.
“I met people in my age range. It was a bigger range than I expected; it was 18 to 40. There were lots of people over 40, and there were 15-year-olds. There was also a 60-year-old who was diagnosed when young. I like that. I think it’s good to see someone in their 60s who had it a long time ago. And all the speakers were so amazing, so impressive, so well-spoken, and totally available, too. Almost all of them stayed for the conference and were available to talk; they’d come sit with you at lunch.”
Before going to the summit, Fickes had had her final chemo infusion. “So after the summit, I got home and I got my blood counts. It turned out they were so low, my doctor wanted to transfuse me. But I hadn’t even felt it. Usually, if they’re that low, you’re lightheaded and you feel crappy, and I didn’t feel it at all that time.”
Stupid Cancer’s tagline is “Get busy living.” And that’s really what the OMG! Cancer Summit feels like — a giant joy infusion inspiring attendees and caregivers to focus on what really matters to them.
“No matter where you are in your cancer life, there is something for you here,” Ward says. “Even if you’ve never been, and you come alone, you’re going to meet someone and that person will be a friend for life. Even if you learn one thing about genomics, you’ll have learned something you didn’t know. We had an attendee last year who came alone. She was standing at the airport in the Pacific Northwest, seriously considering cancelling, scared, didn’t know anyone, asking herself, ‘why am I doing this?’ And on the last day of the conference, she changed her flight so she could stay later to spend more time with the people she met.”
That’s enough to convince me to go. How about you?