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OMG Summit in Vegas Shows the Power of the Young Adult Cancer Movement

Posted Apr 05 2012 4:54pm
Posted in: Stupid Cancer

To the casual observer, it looked like a typical night in Vegas. Several hundred people were packed into a club, talking, dancing, and enjoying views of the strip. But when the rapper Urbalist came out and started performing a song called “Stupid Cancer,” it became clear this was no ordinary event. Everyone in the room could relate to the song, because everyone in the room had been touched by cancer at a young age.

In the towns and cities and cancer centers we had come from, we were the oddballsyounger than other survivors by decades yet older than our peers because of painful life experience. But here at the OMG Cancer Summit for Young Adults , we had found our people. We were surrounded by others who understood exactly what it means to be hijacked by cancer in your 20s and 30s.

This is the power of Stupidcancer.org . Whether you went to the summit in Las Vegas or you stay connected online, you are part of something. You are part of a movement dedicated to making life better for young adult cancer survivors. And here’s something we can all be proud of: our movement is making concrete, tangible progress.

OMG reception at Moon

Sometimes that progress includes throwing a really good party. When you spend your days facing cancer treatment or dealing with its aftermath, you deserve a chance to blow off steam every once in awhile.

The OMG Summit organizers know the value of fun. Whether it was dancing in a gorgeous penthouse bar or laughing at professional comedians who happened to be cancer survivors or snapping photos of Chippendale dancers who stopped by the Testicular Cancer Awareness Foundation exhibit, the summit showed us a good time.

But it wasn’t all fun and games. The conference was also packed with panels designed to help us cope with cancer and its fallout. I had the honor of speaking on two panels, but I also had the chance to learn from other speakers and participants.

A group of skilled survivors and sex therapists led a great conversation about body image, loss of desire, and the pain of rejection. A panel of parents urged survivors to stop feeling guilty because caregivers support us for the simple reason that they love us. These are just a few of the amazing panels; keep checking the OMG site for videos of all the great talks.

In the end, it was the plenary sessions that really illustrated the progress of this movement. For decades, young adult cancer survivors have been largely invisible the field of oncology and that costs us dearly: Our diagnoses come too late, our survival rates have barely changed, and our unique physical and emotional needs are often overlooked.

But thanks to advocates like OMG Summit Founder Matthew Zachary and visionary oncologists like Dr. Leonard Sender, young survivors are becoming more and more visible.

Stupidcancer.org Founder Matt Zachary packs the Pearl Theater

Now the Stupid Cancer Show has 1.6 million listens and Stupidcancer.org has 500,000 friends across social media. The Livestrong Young Adult Alliance works with clinics around the nation to provide dedicated services for young survivors. The National Comprehensive Cancer Network just issued new Clinical Practice Guidelines in Oncology for Adolescent and Young Adult Oncology , which will help set the standard for how oncologists care for young survivors. And researchers like Dr Sender and OMG speakers Dr. Brad Zebrack and Dr. Barbara Jones are generating more data about what works and what doesn’t work for young survivors.

Let’s be clear. This progress occurred because advocates demanded it. Young survivors and our supporters raised our voices and said the situation has to change. Our survival rates must improve and our emotional isolation must end.

We need to keep the pressure on. We can ask our oncologists what they are doing for young survivors, challenge our cancer center to offer more fertility options, or organize a Stupidcancer.org happy hour.

If we all keep raising our voices, then the next round of young people who get diagnosed with cancer will know they are part of a kick-ass movement that gets shit done and throws great parties.

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it's like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.
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