“They never made me feel a part of the decisions they made for me. They didn’t allow me to have a voice in the decisions. They made decisions for me that I continue to question, and I did not feel that they had any empathy for what I was going through.” — Age 24

Younger patients are more likely to initially ignore symptoms, but once diagnosed, they tend to proactively seek out information about treatment options and feel a strong need to advocate for themselves.

Nearly half of younger patients—twice as many as those aged 40 and older—sought a second opinion. This figure is even higher among the youngest cohort, with 67% of patients aged 18-25 pursuing a second opinion.

Unlike older patients, fewer younger patients adopt a “doctor knows best” mentality. In fact, a plurality report being actively involved in choosing the treatment plan that best suited them.

While 7 in 10 younger patients completely trust their healthcare team—a relatively high figure—this trust is still significantly lower compared to patients over 40. In open-ended responses, younger patients often explain how their age negatively impacted their care.

“I was worried that they didn’t have my age in mind. I was still young and wanting to experience teenage life, even just a little, but the treatments kept me too sick even after they had admitted it didn’t need to be so strong.” — Age 20

Younger patients are more likely to experience side effects and symptoms during or after treatment. However, only half of them felt adequately informed about potential side effects. Pain was so significant in younger patients that 14% of patients under 40 surveyed decided to discontinue care. While pain is the most common reason for discontinuing treatment, the majority of younger patients reported they did not need to stop—though this is still more frequent than among patients aged 40 and older.

Fertility issues are another significant concern. One in five younger patients (21%) reported experiencing fertility issues during or after treatment, compared to just 4% of patients over 40. AYA women were disproportionately affected, with 25% reporting fertility challenges, compared to 7% of AYA men. For 6% of younger patients, fertility issues were the most impactful side effect they faced—six times higher than the 1% reported by patients over 40.

Although potential fertility impacts were discussed with three-quarters of younger patients before treatment, many still felt under-informed about side effects overall. Just 52% of younger patients said they felt very informed about potential side effects, compared to 63% of those aged 40 and older.

“I think the biggest reason [AYAs] experience financial toxicity is we are just starting out in life. Oftentimes times we are just graduating college and joining the workforce. We haven’t had a chance to build up a major savings account. We haven’t even thought about getting life insurance yet. . . We just haven’t built up the safety nets that someone older has. So once we get diagnosed, it takes all of the little safety net we
have built.” – Carlos Rickman, 31, Stupid Cancer Community Member

Younger patients face a disproportionate financial burden following a cancer diagnosis. Nine in ten younger patients (90%) reported experiencing at least one financial hardship, compared to just four in ten (39%) older patients. A third of younger patients had to borrow money, delay a major life event, or apply for financial assistance to manage costs.

Out-of-pocket expenses further highlight this disparity. Over the past 12 months, younger patients paid an average of $2,481 for prescription drugs—an amount that increases for those still undergoing treatment. In contrast, older patients spent significantly less, averaging $779 in out-of-pocket prescription costs.

Employment and education were also heavily impacted. Most younger patients continued to work or attend school during treatment, often feeling they had no choice but to do so. As a result, two-thirds (67%) of younger patients reported that cancer had a major impact on their productivity or completely prevented them from working. This is more than double the rate of older patients, only 30% of whom reported similar disruptions.

The combined weight of medical costs, lost productivity, and the need to maintain income or education during treatment impacted many AYAs’ decision to participate in clinical trials. A quarter of Younger Patients report participating in a clinical trial, 3x more than Patients 40+. The number one reason for participating is a doctor recommending, but reduced cost is also important. These insights underscore the significant financial toxicity faced by younger patients—often at a pivotal time in their lives.