‘Stupid Cancer’ initiative connects AYAs with cancer to peers, resources
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Adolescence can be an awkward, transitional time for many people, but for adolescents and young adults living with cancer, these years may be even more confusing and alienating.
“Cancer is a strange disease for young people — often, these patients have never met someone their own age who has been through a similar experience,” Catherine Benedict, PhD, clinical assistant professor of psychiatry and behavioral sciences and medical psychiatry at Stanford University, said in an interview with Healio. “Even in the hospital where they receive treatment, they’re either in pediatric settings with much younger patients or on the adult side sitting in waiting rooms with mostly older individuals. So, they don’t know anyone their own age they can relate to.”
Benedict is dedicated to correcting this as a board member of Stupid Cancer, an organization aimed at connecting and empowering the adolescent and young adult (AYA) cancer community. According to its website, the group “offers a lifeline to the adolescent and young adult cancer community by providing age-appropriate resources to help navigate treatment and survivorship.”
Benedict spoke with Healio about Stupid Cancer’s mission, resources and events, as well as how clinicians can offer additional support to this patient population.
Healio: What is Stupid Cancer’s mission?
Benedict: Our mission is to address the social isolation of AYA cancer — to make sure no young adult goes through this alone. We want to offer them resources and a community that understands them and can give them support at all stages of this journey, from diagnosis into long-term survivorship.
A cancer diagnosis affects a young adult’s life a lot differently than it does for older people or for younger children. Typically, we think of AYAs as anywhere from aged 15 to 39 years. They’re going to high school, going to college or starting a new job. They’re building relationships, starting romantic relationships or starting families. So, when cancer happens and these young people get knocked off that trajectory of building their lives, the issues are very different. Connecting with peers becomes so much more important. They’re wondering how to deal with the demands of college or work while being sick or dealing with ongoing physical effects, how to manage the added financial pressures and medical debt, or they’re trying to have children and wondering how their treatment affected their fertility. Stupid Cancer’s mission is to empower these young people to handle all of the things that come with cancer, including late and long-term effects. We want to build community and end isolation.
Healio: What resources do you provide to AYA patients with cancer?
Benedict: AYA patients can access a wide range of resources on our website, which addresses the big topics that come up for young people. Fertility and family building is a huge one. Education, career and financial impact are also important topics. The website is a source of information, but we also offer a community that “gets it.” We hold events and programs to connect real-life people. They can talk about anything. It’s about connecting with someone who understands where you’ve been.
Stupid Cancer hosts weekly and monthly programs — we call them digital meetups. For our biggest event, CancerCon, hundreds of people affected by cancer along with providers, clinicians and nonprofit organizations that serve the young adult cancer community come together for a weekend to meet each other. They listen to presentations, get information, connect in both small and large groups, and just have fun. It’s a place to have those meaningful moments where they’re sharing personal and emotional experiences and stories. People tend to walk in feeling uncertain of what’s going to happen and come out the other side having made true connections and lifelong friends.
Healio: What can clinicians do to help AYA patients with cancer?
Benedict: AYA patients want to know that their provider understands that they are in a unique stage of life. Cancer doesn’t just happen inside the clinic room; it affects their entire life. They want to see that providers understand that and offer support around these issues. They want to feel as though the care is being tailored to where they are in life and how cancer is impacting them.
I’m a provider — a psychologist — and I specialize in seeing young adult patients. The things I provide are different than what Stupid Cancer provides. Often, my colleagues and I will refer patients to Stupid Cancer to address the needs their oncologist or I might not be addressing. Everyone has their own specialty, but if you let patients know about these outside resources, they can connect with them in their own time when they’re feeling ready.
Recognizing the unmet needs of these AYA patients is valuable. Peer support is at the top of that list, as is being connected. So, as medical providers, we can do the thing we’re trained to do and also connect them with outside resources they can use to get their other support needs met.
Clinicians can also help by recognizing that there are certain time points that are difficult for AYA patients with cancer. When they’re first diagnosed is one such point — the rug gets pulled out from under them and their life is turned upside down. During this time, good communication between the patient and physician is essential. The AYA patient is relying on the physician to develop a treatment plan, and there is a need for close connection and trust.
The transition to post-treatment survivorship is another area where there’s a bit of a free fall. AYA patients are no longer connected to their doctors as frequently and are expected to go back to their lives. Everyone around them expects them to be better now and “back to normal.” So, that’s a new phase of uncertainty about their future and how they interact with the world. This is even harder when the patient is dealing with late and long-term side effects or physical changes from their treatment. There is a whole lot of uncertainty and identity renegotiation — having to navigate this transition while trying to figure out who they are and how they show up in the world in general, let alone as a cancer survivor.
So, clinicians can recognize that this need for community is something that often goes unmet and unrecognized as a part of clinical care. Just recognizing that these resources are there and offering them to patients is valuable. There may be times when patients might not feel ready — they might be overwhelmed and feel that being part of a community is too daunting. Still, knowing it’s there, if and when they are ready, is really important.
For more information:
Catherine Benedict, PhD, can be reached at Stanford Health Care, 211 Quarry Road, 2nd Floor, Suite 205, Palo Alto, CA 94304; email: cbenedict@stanford.edu.
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