How Stupid Cancer Is Building a Support Community for AYA Survivors

A Conversation With Matthew Zachary



Matthew Zachary

Matthew Zachary

In 1995, Matthew Zachary, an aspiring concert pianist and composer, was en route to graduate school to study film composition when he lost all fine-motor coordination in his left hand, was diagnosed with pediatric brain cancer (medulloblastoma), told he would never play again, and was given 6 months to live. Although the aggressive therapy he endured—a full craniotomy to remove a golf ball–sized tumor in his brain, and 33 treatments of high-dose radiotherapy—cured his cancer, the trajectory of the reminder of his life would be forever altered. Fifteen years later, the cumulative effects from the radiation to his brain caused a stroke.

Meeting someone who was going through similar treatment side effects that I had gone through and was still dealing with … made me feel less alone.
— Matthew Zachary

In 2002, Mr. Zachary met his first peer: another young adult survivor of brain cancer. That encounter changed his life—and, ultimately, the lives of thousands of other adolescent and young adult (AYA) cancer survivors.

“Meeting someone who was going through similar treatment side effects that I had gone through and was still dealing with—he lost his hair, was infertile, and couldn’t date—made me feel less alone,” said Mr. Zachary. “Having cancer when you are a young adult isn’t better or worse than when you are a child or an older person, it’s just different. What got me interested in fighting for the civil liberties of my generation of cancer survivors was meeting Craig.”

In 2007, Mr. Zachary founded Stupid Cancer (stupidcancer.org), a nonprofit organization, which has since become the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health, and social media. Stupid Cancer programs include CancerCon, the largest annual AYA patient congress; The Stupid Cancer Show podcast and Instapeer, a free mobile app offering instant, anonymous 1:1 peer matching.

The ASCO Post talked with Mr. Zachary, Founder and Chief Executive Officer of Stupid Cancer, about how the charity is creating a social movement for the international young adult cancer community.

Paying It Forward

Why was it important for you to launch Stupid Cancer?

After my medulloblastoma diagnosis, my odds of survival were 50% over the next 5 years. It took me almost 9 years to feel normal again after my treatment ended, and then I had a stroke. So when we talk about the late effects from cancer and their lingering impact on a survivor’s life, I understand what that means, because I’m that survivor.

As I celebrated my 10-year anniversary as a cancer survivor, I realized that not much had changed in survivorship care over the past decade and that cancer was going to be just as bad for the next young adult patient as it had for me and wanted to do something that would make life better for that person.

At the time, there weren’t many advocacy programs for AYAs, and I wanted to provide a place where Gen Xers could find a community of their peers, resources to improve the quality of their lives, and a bullhorn to express their grievances—and they responded. I also wanted to bring a national spotlight to this often-ignored population of cancer survivors.

Ending Isolation

What is the primary goal of Stupid Cancer?

Although the Stupid Cancer website has links to organizations that can provide direct support services for issues such as financial and legal aid and career counseling, our mission is to end the isolation AYAs face regardless of whether they are newly diagnosed or long-term survivors. About 80% of our community has been out of active treatment for at least 1 year.

We are a nontraditional nonprofit organization in that our focus is on building an online community of activists to help improve the lives of AYAs, no matter how long they may survive, and provide them with a purpose. At Stupid Cancer, we don’t care which body part has been affected by cancer or whether the survivor is stage 0 or 4. Here, members find a level playing field.

Social Connection Is Paramount

How does Stupid Cancer empower AYA cancer survivors to improve their quality of life?

The social connection is paramount. Two years ago, we e-mailed an online survey to all registered attendees to our CancerCon conference to evaluate the impact the conference had on the psychosocial and related outcomes for AYAs and their caregivers. Attendees were asked to complete a survey before and after the conference and were questioned about such issues as how connected they felt to other AYA survivors, their knowledge about current areas of research and issues AYAs face, and their perceived access to age-appropriate resources, among others.

The results from the questionnaire showed that after the conference, all these areas significantly improved, providing us with evidence that the peer community we have built is achieving its mission.1

Need for Survivorship Programs Geared for AYAs

What would you like to see happen nationally to improve the lives of AYA
survivors?

We need more cancer survivorship programs to help survivors in the AYA age group improve their quality of life and, ultimately, their long-term outcomes. There are wonderful programs for children under the age of 18 but not many for young adults. Moreover, there are no standard-of-care survivorship clinics for this population. AYAs are often cared for by primary care physicians, who may not know the risks associated with AYA cancer and its therapy, so they are often left struggling.

I wanted to provide a place where Gen Xers could find a community of their peers, resources to improve the quality of their lives, and a bullhorn to express their grievances. I also wanted to bring a national spotlight to this often-ignored population of cancer survivors.
— Matthew Zachary

Research shows that AYAs lead unhealthier lifestyles than their cancer-free counterparts and have higher rates of smoking and obesity. They are also more likely to be unemployed or unable to work altogether and tend not to seek medical care due to lack of health insurance. We need specialized AYA programs in cancer centers that focus on the needs and issues of this population.

AYAs just want to feel normal. Stupid Cancer provides them with the social network to experience the type of normalcy they had before cancer, but this is not enough. We also need standardized survivorship programs to give them their best shot at a better quality of life and long-term survival. ■

Disclosure: Mr. Zachary reported no potential conflicts of interest.

Reference

1. Victorson D, Zachary M, Ward A, et al: Hunting the ‘elephants in the room’ through an intensive advocacy, education, & support event for AYAs and their care providers: 2 years of outcomes data from CancerCon. Available at http://stupidcancer.org/elephants.pdf. Accessed February 3, 2017.



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