A Conversation with Matthew Zachary: The Young Adult Cancer Movement ► Matthew Zachary ▲NCI Cancer Bulletin for July 26, 2011 - National Cancer Institute

NCI Cancer Bulletin for July 26, 2011 - National Cancer Institute: "A Conversation with Matthew Zachary: The Young Adult Cancer Movement

Matthew Zachary

Matthew Zachary

In 1995, during his senior year of college, aspiring concert pianist Matthew Zachary was diagnosed with brain cancer and entered a cancer world geared toward the needs of children and older adults. A decade after emerging from the experience, he founded the I'm Too Young For This! Cancer Foundation (i[2]y), which serves as a 'community of support' for young adults, survivors of childhood cancers, and caregivers. Through its Web site, cancer conferences, forums, and Stupid Cancer Radio Show, i[2]y has become one of the many voices championing the needs of young adults with cancer.

Why did you found the I'm Too Young For This! Cancer Foundation?

I founded i[2]y because I'm a young adult cancer survivor, and I did not want anyone to have to go through what I went through. I was diagnosed with brain cancer in 1995 when I was in college. So I went through all the same stuff that young adults experience—the isolation, the fear, the misunderstanding, the stigma, the 'I'm just getting my life started, how could this happen to me? I'm not 80 years old.'

What sets your organization apart?

We are a grassroots organization that's now evolving into a mainstream programmatic organization. We have paid attention to the fact that cancer is an extremely different type of experience when it happens to young adults. Before the young adult cancer movement, everyone thought about cancer in terms of little kids and everyone else. We've broken through that assumption. And, thanks to advances in research, there are now clinical and population studies to support the view that people between the ages of 18 and 40 are the most underserved age group in cancer.

We want young adults with cancer to be aware of all the resources that can help them get busy living. Our Web site serves as a portal for other young adult organizations that provide direct patient services specifically for this age group. People can discover these organizations because they visit our site, hear us speak, or listen to the radio show. We introduce them to an entire world they might otherwise not have known about.

What makes young adults with cancer unique?

For starters, we're not little kids and we're not older adults. We don't necessarily want to journal about our feelings or go to a support group. We want to go online, or go to a bar, or just feel like we're living our lives with people who [understand what we're going through.] The young-adult cancer movement was born out of sheer necessity.

What kind of feedback do you get?

We have scores of testimonials from people who have attended our events or just learned that we exist. One person said, 'My doctor may have cured my cancer, but learning about your community has saved my life.' A woman who attended our annual conference this year said, 'I learned to keep fighting, to be my own advocate, and to never give up, no matter what the doctor says.' She learned that by coming to the event.

It's incredibly powerful for a young adult with cancer to discover an entire community dedicated to their age group—people who are not their moms, not their grandmas, and who get it.

How does your group interact with doctors?

We recently received our first CME (Continuing Medical Education) certification, so we can now train and educate doctors on things like best practices, standards of care, patient communication, and patients' rights. The doctors who are in their 20s and 30s—the fellows—are the same age as the people we serve. These doctors come to our conferences simply because they want to understand what it's like to have cancer at their age. [That understanding] helps them become better providers.

Do you encounter doctors who are cancer survivors?

They are few and far between, but they're out there. I can tell you that a significant percentage of young adults who get cancer change their entire career track because they then want to go into medicine. We're looking at a whole new group of medical professionals [who will emerge] in the next 10 years who have had cancer and want to give back. This is a sad blessing.

How old are you, and do you plan to continue your outreach efforts to other AYAs in the future?

I'm 37. I will be aging out of this demographic in about 3 years. But we're developing an alumni network that will carry on the legacy of the movement and build new leadership. As more people join the AYA age group, whether they are long-term childhood cancer survivors or they're people who just get cancer after age 18, they're going to need the alumni.

I look forward to 40, because I'll just be alive. And I can't wait to be an alumnus, an ambassador, a steward.

Are there any times you are able to forget your cancer experience?

Yes. If I'm with my wife and my kids and we're on vacation—and I'm not tied to my phone—I can revel in those moments.

But I've dedicated my whole life to a movement, and it can be hard to escape the world you build for yourself. My father once gave me a great quote: 'I wish to have a job I love and never work again.' That's my life.

—Edward R. Winstead

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