Young adults with cancer report putting off appointments and getting dismissed by doctors, according to a new study.
When Natasha Allard’s close friend Dave was diagnosed with Stage 4 testicular cancer at age 26, the University at Buffalo postdoctoral associate started paying more attention to how cancer was upending the lives of young people.
What she saw would eventually change the course of her career.
At the time, Allard was working in marketing and communications at Roswell Park Comprehensive Cancer Center. She learned that cancer is increasingly being diagnosed in young adults, while holding steady or declining in older adults.
This knowledge spurred Allard to pursue a doctorate in community health and health behavior. She wanted to focus on educating young adults about paying attention to their bodies, listening to their instincts, and getting symptoms checked out sooner.
Under the mentorship of Heather Orom, associate professor of community health and health behavior in the School of Public Health and Health Professions, Allard completed three dissertations. In the first, she found many young adults waited months or even years, after noticing symptoms, to see a physician. She developed that study into an article published in the journal Cancer Causes & Control.
Orom served as coauthor, along with Thomas Feeley, a professor in the UB communication department, two researchers with Roswell Park and one with Hunter College’s psychology department.
According to the American Cancer Society, cancer now ranks among the fifth largest causes of death for adults ages 20 to 39. For young adult females, it’s the leading cause of disease-related death.
“There is a lot of research on cancer treatment and prevention, as there should be,” Allard says. “But there’s much less on what people do between noticing a symptom and getting a diagnosis, and that time matters. With young adults, I wanted to know: How did they decide whether their symptoms were serious? And how did doctors respond?”
At the beginning of 2023, Allard interviewed 30 individuals between the ages of 20 and 39 nationwide who had been diagnosed with cancer She asked the interviewees to take her back to that first symptom they remembered or first gut feeling that something was wrong. On average, participants were 28 when diagnosed and about four years past their diagnosis.
She found that many put off seeking care because they blamed their symptoms on stress. They also found information online that downplayed symptoms or offered unclear guidance. And when they did see a doctor, their concerns were often dismissed.
The delays in seeking medical care didn’t surprise Allard. She notes that young adulthood is often marked by many concurrent, sometimes stressful, changes—new jobs, new living arrangements, and new friendships.
Some participants also didn’t know which changes in their body warranted concern. One young woman, for instance, had abnormal bleeding for a year but figured her body was just “built differently.” She was later diagnosed with cervical cancer at age 35.
What did surprise Allard was how often doctors brushed off patients’ concerns, even when they reported classic warning signs.
One provider suggested a gluten-free diet for a patient with rectal bleeding who was later diagnosed with colorectal cancer at 39. Of two patients later diagnosed with brain cancer, a 23-year-old was sent home with a sleep aid, and a 27-year-old had to make three or four trips to doctors before anyone ordered an MRI.
Allard acknowledges that doctors face constraints, from overloaded schedules to insurance limitations. And despite rising rates, cancer is still rare in young adults, and symptoms like fatigue and headaches usually have less serious causes.
“But a symptom that won’t go away still deserves a closer look,” she says. “And young adults should feel empowered to speak up and push for testing.”
Speaking up was easier for some of the interviewees than others. Those who felt comfortable navigating the health system kept pushing for answers, while others often accepted their doctor’s first explanation and waited longer for a diagnosis.
Allard says the findings point to opportunities for public health communicators and educators. She would like to see campaigns on social media and public places where young adults spend time to help them recognize warning signs and feel more confident seeking care.
“Not everyone knows a lump or abnormal bleeding means you should go to the doctor,” she says.
Young adults also need to hear that physical symptoms caused by stress shouldn’t be normalized, she adds. A doctor should help find the cause or, if it is stress, connect them with resources to manage it.
And because so many young adults already turn to the internet and increasingly to artificial intelligence, when something feels off, Allard sees a chance to use those tools to prepare for appointments rather than replace them.
“Instead of using AI solely for self-diagnosis, why not use it to make a list of questions and a timeline of the symptoms you’ve had?” she says.
Doctors have a role to play, too. Allard recommends communication training focused on listening to young adults’ concerns and giving clear follow-up instructions. She also points to the need for system-level fixes, from insurance coverage to access to care.
“If you’re not going to order any clinical testing for a patient who has had severe headaches for months, then you need to ask the right questions and explain the plan clearly, so they don’t walk away feeling completely dismissed or completely terrified,” she says.
Allard’s friend Dave, whose diagnosis at 26 first set her on this path, died at age 31. She dedicated her dissertation to him.
Source: University at Buffalo
