Spotlight on: Stupid Cancer

Matthew Zachary was 21 years old when he was diagnosed with brain cancer in 1996. As he journeyed through cancer treatment, he couldn't find any services that addressed the unique challenges of a young person living with cancer.

"There was a whole swath of people in the middle [between childhood and older adulthood] going through these really incredible changes in their lives, and the [healthcare] system really failed to acknowledge the unique challenges [of that age group]," says Alison Silberman, current CEO of Stupid Cancer . "You were either a pediatric patient or you were an adult patient."

These unaddressed challenges included things like isolation from one's peers and community, disparities in cancer care, and interruption in major life events like college, launching a career, or starting a family.

By 2007, Zachary founded an organization to address these gaps, which would later become Stupid Cancer, in 2012. Zachary also began a podcast, The Stupid Cancer Show , which grew into a YouTube show and features patients and innovators in the medical field talking about their experience with adolescent and young adult (AYA) cancer, says Silberman.

In 2008, Zachary launched their first AYA cancer conference, which grew from 100 people the first year to over 500 attendees in 2015 - the first year they dubbed it " CancerCon ." Today, this annual event is well-known nationwide as an essential resource for the AYA cancer community.

Zachary stepped away from Stupid Cancer in early 2019, says Silberman, and she took up the reins. Silberman was introduced to the world of AYA cancer when her younger brother received a stage 4 Ewing sarcoma diagnosis in 2007. She has been working in AYA cancer patient advocacy ever since.

"It really shifted my perspective, watching [my brother] go through what he did and being really isolated from his friends [as] a 24-year-old," says Silberman. "It's a really personal and passionate mission for me to make sure that there aren't other young people who [feel alone] in this purgatory of cancer care."

Stupid Cancer was one of the first organizations to acknowledge this unique "cancer purgatory" and to start talking about underrepresented AYA cancer challenges, normalizing these conversations we have today, says Silberman.

Their Goal

"Our goal is to make cancer suck less," says Silberman. "We understand that getting cancer or being diagnosed with cancer at this stage in your life has such significant ramifications on so many different parts of your life."

These truths can feel isolating, but Stupid Cancer exists to help young people with cancer know they are not alone, says Silberman. "We're not here to make it all sunshine and rainbows," she says, "[but] we're here when it gets really crappy [and] we're here to celebrate the wins."

Whether through the many informative resources on their website or through meetups and conferences, Stupid Cancer supports AYAs with cancer through virtual and in-person community and connection.

Services They Provide

Stupid Cancer offers an extensive list of opportunities for education and connection. Through their discussion series - which is an interactive webinar experience - you can learn from cancer experts in 20- to 30-minute presentations, then ask questions and chat with your peers . You can also connect with other AYAs with cancer through Stupid Cancer Stories , reading about your peers' experiences or sharing your own.

Behind the scenes, Stupid Cancer also works to address health disparities within the AYA community. While AYAs already experience health gaps because of their age, the Stupid Cancer team also realizes more layers of disparity exist around gender identity and race, says Silberman.

To better understand these issues, Stupid Cancer held town halls for two years, inviting marginalized communities under the AYA umbrella to talk about their frustrations and discuss workable solutions. Now, they are taking these ideas and enacting them through various projects like updated resources, a medical jargon glossary, and a health disparity session at CancerCon.

Events

For those who are ready to meet other AYAs in the cancer boat, there are virtual or in-person Stupid Cancer meetups all over the United States. These casual gatherings provide opportunities for people to come together, says Silberman, which directly fights against the isolation so many AYAs experience.

Stupid Cancer's annual AYA cancer conference, CancerCon, is their biggest event of the year. "We bring in experts from all over the country in all different fields to present and share and lead discussions on these topics. We also have a bunch of social activities to make it fun and to really foster a lot of that relationship building that happens throughout Cancer Con," says Silberman.

You can attend the three-day virtual CancerCon in the spring, and the live four-day event in late summer. Topics and discussions cover a vast range of subjects, says Silberman, including mental health, advocacy, fertility, relationships, and sex.

"We also have a really robust social media community [with] about 400,000 followers across our platforms," says Silberman. You can check them out on Instagram , TikTok , Facebook , YouTube , and more.

Core Belief

Stupid Cancer is an interconnected community of all AYAs with cancer, says Silberman. "When we talk about community, we mean everyone: patients, caregivers, professionals … all of them. We want to make sure that their experiences are honored, seen, celebrated, and shared."

Resources We Trust

• Mayo Clinic Comprehensive Cancer Center Blog: Q&A on Cancer in Adolescents and Young Adults
• American Cancer Society: Special Issues for Young Adults With Cancer
• National Cancer Institute: Emotional Support for Young People With Cancer
• NewYork-Presbyterian: Filling the Knowledge Gap on Reproductive Health for Adolescent and Young Adult Cancer Survivors
• National Foundation for Cancer Research: Young Adults and Cancer: What You Need to Know

Abby McCoy, RN

Author

Abby McCoy is an experienced registered nurse who has worked with adults and pediatric patients encompassing trauma, orthopedics, home care, transplant, and case management. She is a married mother of four and loves the circus - that is her home! She has family all over the world, and loves to travel as much as possible.

McCoy has written for publications like Remedy Health Media, Sleepopolis, and Expectful. She is passionate about health education and loves using her experience and knowledge in her writing.