Why clinical trials matter for young adults with cancer (AYAs)

Apr 2 2:07pm | Michael Wridt, Patient Educator | @mwridt

Article written in collaboration with: Dr. Wendy A. Allen-Rhoades, M.D., PhD.

Getting diagnosed with cancer in your teens, 20s, or 30s can flip your world upside down, fast. One minute you’re thinking about classes, your job, relationships, friendships, family plans or what’s next in life… and suddenly everything feels uncertain.

If you’re in this age range, you might hear the term “AYA,” which stands for adolescents and young adults (ages 15–39). You’re not a little kid, but you’re not an older adult either. You might be in school, building your career, figuring out who you are, starting a family or just trying to keep things together day by day. Cancer hits differently at this age, not just physically, but emotionally and socially too.

Because of these unique challenges and needs, having access to the right treatment options is especially important. That’s where clinical trials come in. They are not just a “last resort”, this is a common myth. The reality is that many clinical trials may be available at different points during the cancer journey.

At diagnosis: Comparing standard treatment with a modified or targeted approach

During treatment: Finding ways to reduce side effects or adjust treatment length

If cancer returns: Testing new drugs or combinations

Survivorship trials: Studying fertility, emotional health, and long-term effects

Historically, adolescents and young adults have been underrepresented in cancer research. In the 1990s and early 2000s, researchers noticed something concerning survival rates for AYAs weren’t improving as much as they were for younger kids or older adults. Why? Because not enough young people were included in clinical trials.

That’s starting to change, but there’s still work to do. Being aware of clinical trials and asking about them can make a real difference, both for your own care and for future patients like you. For AYAs, the key is to view clinical trials not as something separate from care, but as one of the pathways through which care continues to improve. Approach them with informed questions rather than assumptions.

Clinical trials are not about experimenting on young people; they are about learning with them.

Clinical trials are always voluntary.

Trials are closely monitored and follow strict safety and ethical rules.

Patients are informed about risks, benefits, and alternatives, and they can leave a trial at any time.

Common myths about clinical trials

Some misunderstandings prevent people from exploring trials. Here are a few “myths” with facts:

Is a clinical trial right for you?

Not every clinical trial is the right choice for every patient—and choosing not to join is a valid decision. A good fit might be someone who:

Wants to explore all treatment options

Has a trial that matches their diagnosis and stage

Values contributing to future cancer knowledge

Is interested in newer or more tailored approaches

What matters most is whether the trial fits your life, values, and priorities, including fertility goals, school or work demands, and support systems.

Actions AYAs can take today

If you or someone you love is facing cancer, here are action steps you can take today.

Ask your doctor early: “Are there clinical trials appropriate for me right now?”

Consider a second opinion at a center with AYA expertise

Use trusted tools like Clinical Trials at Mayo Clinic, ClinicalTrials.gov or the National Cancer Institute trial finder

Ask about timing, eligibility, and next steps

Talk openly about logistics such as travel, time, work, school, and insurance

Ask how treatments may affect fertility and long-term health

Bring a friend or family member to appointments for support

Attend the event below offered during AYA Awareness Month:

April 8 | 3:30–4:30 PM CST | Clutch Conversations: A Caffeinated Function 

Wait… That’s an Option?

Dr. Allen Rhoades, MD, PhD will discuss cancer clinical trials as part of today’s treatment choices, helping patients better understand what clinical trials are and how they may be an option during cancer care.

Available virtually enterprise wide and in person in Rochester, MN.