THE BLOG
04/04/2013 11:09 am ET Updated Jun 04, 2013

The Evolution of Young Adult Cancer Awareness

I should have been excited and proud. Instead, I was royally pissed off.

It was November 2012 at the annual meeting of Critical Mass: The Young Adult Cancer Alliance. I had just listened to the beautiful and formidable Suleika Jaouad, a young adult cancer survivor and blogger, tell her cancer story to nearly 200 representatives of medical, research and advocacy organizations, all assembled to improve the lives of young people affected by cancer.

So why was my overriding emotion one of frustration?

It was because the story she told -- one of misdiagnosis, uncertainty, dismissal and isolation -- hit way too close to home. Tweak a few details and knock it back a couple of decades, and it could have been my own story, circa 1994. I couldn't believe that, nearly 20 years later, with all the progress we had made in launching and growing the field of young adult oncology, a newly-diagnosed patient would still run up hard against so many of the same obstacles and challenges.

Granted, there were a few major differences in our tales. The first was her forum: Suleika blogs for the New York Times about many issues facing young adults with cancer through the lens of her personal experience. To have a public platform at a place like the Times is, in itself, a giant leap forward in recognition and credibility for the field of young adult oncology.

Second, on a more practical front, she had frozen her eggs to preserve her fertility. When I was diagnosed, cancer-induced sterility was something that you never anticipated but were supposed to accept gratefully after the fact, an unfortunate bonus that came along with the grand prize of survival. The fact that fertility preservation was incorporated into her cancer experience is an achievement worth applauding.

The final and most obvious difference was that she was telling her story to a ballroom full of people who cared passionately about helping young people with cancer like her -- health care professionals who were caring for young adults, researchers who were studying their needs and issues, and advocates who were developing resources and services to support them. While I had struggled to find even one other young adult patient during my year-plus of treatment, Suleika had just spoken in front of a caring and engaged community that didn't even exist as a figment of my imagination back in the day.

But Suleika's story, and her challenges in finding this community and its wealth of resources, made it starkly clear that, while much progress has been made, there is still far to go in order for newly diagnosed young adult patients to reap the benefits of that progress the instant they hear the words, "You have cancer."

When Critical Mass formed in 2006 under the auspices of the LIVESTRONG Foundation as the Young Adult Alliance, it was a bold experiment in simultaneously building a community and a new field of oncology. We were a smallish group of committed volunteer stakeholders who wanted to amplify the (slowly) growing awareness of an overlooked and misunderstood population: young people with cancer between the ages of 15 and 39 years old whose survival rates, it had just been discovered, hadn't improved since the 1970s. And for those of us who had been patients ourselves, we knew firsthand that there was a lot that required improvement. Things like rampant delays in diagnosis, no peer support, financial and disclosure challenges for those in fledgling careers, the need for fertility preservation information and financial assistance, no medical "home" between the pediatric and adult worlds and, in general, few resources addressing the unique needs of cancer patients at this life stage in a way that was both relevant and resonant.

Our solution was to bring together everyone who cared about -- or who we thought should care about -- young adults, and to throw them in a room together with structured collaboration to identify the issues and build a plan to address them. After that, our hope was... well, that magic would happen. That enough people would care, and would continue to care, to bring about a critical mass (pun fully intended) of interest that would sustain implementation of the plan and the continued growth and expansion of the field.

And magic did happen. Our young adult ecosystem has continued to expand and grow. Attendance at the annual meeting has increased every year. Many new organizations that offer new services and resources have come into being. There are medical fellows being trained in young adult oncology. There is a journal and a professional society. The annual tally of journal articles with AYA references has increased from negligible to more than 5,000 per year in a just few short years.

The growth of the network has been so robust that the LIVESTRONG Foundation opted to support the spin-off of the whole program into a separate 501(c)3 non-profit -- et voila, Critical Mass was born. And as we at Critical Mass take a hard look at where we have been in order to chart our best path forward, one thing that we know for sure is that the fundamental desire to grow the network and strengthen our mission to serve young adults with cancer has never changed.

One of the characteristics that defines young adults is impatience, and an altered perception of time. It's one reason that, when you tell a young person that they "only" have to go through, for example, a year of treatment, they will look at you like you are certifiably insane and will almost certainly tell you that a year is an unfathomable length of time to step outside of the life they are meant to be living.

Although young adulthood is fast receding in my rear view mirror, I think that characteristic is ingrained enough to explain why I can feel frustration and impatience in the face of what most would call success. But this week, as we celebrate National Young Adult Cancer Awareness Week (which, I will note, also did not exist during my own cancer journey), I will allow myself to experience a measure of satisfaction before turning around and rolling up my sleeves to join again with the rest of this incredible community as we continue our work to make sure that we are there to catch the next young adult who falls through the cracks. And the next, and the next, and the next.

Heidi Schultz Adams, president and CEO of Critical Mass: The Young Adult Cancer Alliance, is author of
Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives.