April 6th through April 10th is Adolescent and Young Adult (AYA) Cancer Awareness Week, a time dedicated to bringing attention to the unique realities of people diagnosed with cancer between the ages of 15 and 39, a group that often falls in between pediatric and older adult care and is frequently overlooked in research, resources, and support.

According to the National Cancer Institute, about 89,000 young people in this age range are diagnosed with cancer each year in the United States, accounting for about five percent of all diagnoses.

What’s less often talked about is that for some cancers, rates are actually rising in younger generations. According to the American Cancer Society, colorectal cancer in people under 50 has been increasing by about 2–3% each year, even as rates decline in older adults. It has also become one of the leading causes of cancer-related death among young adults, with about 1 in 5 new cases now diagnosed in people under 55.

The National Cancer Institute notes that young adults are also more likely to be diagnosed at later stages, in part because symptoms are often dismissed or attributed to less serious conditions. And this trend isn’t limited to one type of cancer. Research highlighted by the National Institutes of Health shows that several cancers, including breast, pancreatic, kidney, and colorectal, are increasing in younger generations, pointing to a broader shift in cancer trends.

So yes, awareness matters. But awareness alone doesn’t change what it feels like to be dismissed in a doctor’s office, or to navigate disability, fertility, identity, and everything in between. Recently, our Rooted Voices Advisory Board came together to reflect on AYA Awareness Week. We asked a simple but honest question: What’s really needed in the AYA space with all that is going on the world today? What emerged was thoughtful, direct, and deeply grounded in lived experience.

Here are a few of the themes that came forward.

Being taken seriously, earlier

Many young adults shared how difficult it can be to get answers when their concerns aren’t taken seriously. Being told you’re “too young,” reassured too quickly, or asked to wait it out can delay diagnosis and add another layer of stress to an already overwhelming experience.

Several board members described having to push for testing or advocate more strongly than expected, especially when symptoms were initially minimized. Over time, this can create hesitation. People begin to question their own instincts, wonder if they’re overreacting, or delay speaking up again, even when something still feels off.

Board members also pointed to the need for stronger provider training in bedside manner, clearer guidance for young adults on when and how to advocate for additional testing, and clinical environments where concerns are met with curiosity instead of dismissal. Small shifts in how concerns are received can make a meaningful difference, not just in outcomes, but in how safe and supported someone feels seeking care.

Turning advocacy into something tangible

Accessible education around prevention and early detection, including HPV vaccines, pap smears, mammograms, and genetic testing, was also highlighted as an ongoing need. Without clear, centralized information, many young adults are left to piece things together on their own or learn about options later than they should.

That same gap shows up in how we talk about self-advocacy. It’s often encouraged, but not always explained in a way that feels usable in real moments of care.

Board members expressed interest in more concrete, shared tools, such as a toolkit or living resource document that young adults can return to and build on over time. This could include language for how to approach second opinions, guidance for navigating pushback or uncertainty, and clear next steps when care is denied or delayed.

Tools like this can help make advocacy feel more possible, especially in moments when it’s hardest to know what to say or do.

Making space for grief in all its forms

Grief showed up in many different ways in this conversation. Not only in response to loss, but in the ongoing, layered ways it can exist alongside a cancer experience. Changes in identity, plans, relationships, and sense of certainty all carry their own forms of grief. They identified a need for ongoing spaces to process grief, community-based ways to remember and honor those who have died, and support that acknowledges grief as an integral part of the experience, not something separate from it. 

Making resources easier to find and use

A number of participants reflected on how difficult it can be to find and navigate available resources. They shared that finding information and resources about fertility preservation and storage, financial assistance and grants, insurance navigation and appeals, and workplace and school accommodations has been challenging. In many cases, resources do exist, but they are scattered or not clearly communicated. There is a strong desire for more centralized, easy-to-understand information that young adults can actually use in real time.

Expanding what support can look like

Support groups can be meaningful, but they may not meet every need. Young adults are often navigating multiple layers of experience at once, and many are looking for support that feels more tailored and reflective of who they are. This includes identity-affirming spaces, creative and flexible ways to process and connect, and broader representation across cancer types, including rare diagnoses. Support is most effective when it reflects the complexity of the people it’s meant to serve.

What We’re Doing (and Still Learning)

At Cactus Cancer Society, AYA Awareness Month is not just about visibility. It’s about listening and responding.

Many of our programs are shaped directly by conversations like this:

• Creative spaces like The Inner Canvas, where grief and identity can be explored without pressure
• Programming that centers lived experience alongside professional insight
• CE Programs where providers can learn more about how to effectively support YAs with cancer 
• Ongoing efforts to make resources more visible, usable, and relevant, including our recently updated resource section 

And we know there is still more to build.

Awareness Isn’t the End Goal

AYA Awareness Month matters. Awareness is only the beginning. What young adults are asking for is care that is informed, accessible, and responsive to the reality of their lives.

Part of that is in the small moments. Like being listened to, being taken seriously, having access to information that’s actually clear and easy to find, knowing what questions to ask, and feeling supported enough to ask them.

It’s also in the way support shows up over time. Not just at diagnosis, but in the in-between, in the long-term, and in the parts that don’t always get talked about. We’ll keep listening. And we’ll keep building alongside this community.

Got feedback you want to share with us on what you think the YA Cancer Community needs? Reach out to us at info@cactuscancer.org