Young adults with cancer report rescheduling appointments and being turned away by doctors, according to a new study.
When Dave, a close friend of Natasha Allard, was diagnosed with stage 4 testicular cancer at the age of 26, the University at Buffalo postdoctoral associate began to take a greater interest in how cancer was upending young people’s lives.
What she saw would ultimately change the course of her career.
At the time, Allard worked in marketing and communications at Roswell Park Comprehensive Cancer Center. She learned that cancer is increasingly being diagnosed in young adults, while it remains stable or declining among older people.
This knowledge inspired Allard to pursue a doctorate in community health and health behavior. She wanted to focus on educating young adults about the need to pay attention to their bodies, listen to their instincts, and get their symptoms checked 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 theses. In the first, she discovered that many young adults waited months or even years after noticing symptoms to see a doctor. She developed this study in an article published in the journal Causes and control of cancer.
Orom was a co-author, along with Thomas Feeley, a professor in the UB department of communication, two researchers from Roswell Park and one from the psychology department at Hunter College.
According to the American Cancer Society, cancer now ranks as the fifth leading cause of death among adults ages 20 to 39. For young adult women, it is 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 a lot less to know about what people do between seeing a symptom and getting a diagnosis, and that time matters. With young adults, I wanted to know: How did they decide if their symptoms were serious? And how did doctors respond?”
In early 2023, Allard surveyed 30 people aged 20 to 39 across the country who had been diagnosed with cancer. She asked respondents to take it back to the first symptom they remembered or the first gut feeling that something was wrong. On average, participants were 28 years old at the time of diagnosis and approximately four years after their diagnosis.
She found that many postponed seeking care because they attributed their symptoms to stress. They also found information online downplaying symptoms or offering unclear advice. And when they did see a doctor, their concerns were often brushed aside.
The delays in getting medical care did not surprise Allard. She notes that young adulthood is often marked by numerous simultaneous, sometimes stressful changes: new jobs, new living conditions and new friendships.
Some participants also didn’t know what changes in their body were worth worrying about. One young woman, for example, had been bleeding abnormally for a year, but thought her body was simply “built differently.” She was later diagnosed with cervical cancer at the age of 35.
What surprised Allard was how often doctors ignored patients’ concerns, even when they reported classic warning signs.
A provider suggested a gluten-free diet to a patient with rectal bleeding who was subsequently diagnosed with colorectal cancer at age 39. Of two patients later diagnosed with brain cancer, a 23-year-old was sent home with a sleeping pill, and a 27-year-old had to make three or four doctor visits before anyone ordered an MRI.
Allard acknowledges that doctors face constraints, from busy schedules to insurance limitations. And despite rising rates, cancer remains rare among young adults, and symptoms like fatigue and headaches generally have less serious causes.
“But a symptom that doesn’t go away still warrants further investigation,” she says. “And young adults should feel empowered to speak out and push for testing.” »
It was easier for some interviewees than others to express themselves. Those who felt comfortable in the health care system continued to demand answers, while others often accepted their doctor’s first explanation and waited longer for a diagnosis.
Allard says the results indicate opportunities for public health communicators and educators. She would like to see campaigns on social media and in public places where young adults spend time to help them recognize the warning signs and feel more confident in seeking care.
“Not everyone knows that a lump or abnormal bleeding means you should see a 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 many young adults already turn to the Internet and increasingly to artificial intelligence, when something goes wrong, Allard sees an opportunity to use these tools to prepare for dates rather than replacing them.
“Instead of using AI just for self-diagnosis, why not use it to build a list of questions and a timeline of symptoms you’ve been experiencing?” she said.
Doctors also have a role to play. Allard recommends communication training focused on listening to young adults’ concerns and providing clear follow-up instructions. It also highlights the need for system-level solutions, from insurance coverage to access to care.
“If you’re not ordering any clinical tests for a patient who has been suffering from severe headaches for months, then you need to ask the right questions and explain the plan clearly, so they don’t leave completely rejected or completely terrified,” she says.
Allard’s friend Dave, whose diagnosis at age 26 set her on this path, died at age 31. She dedicated her thesis to him.
Source: University at Buffalo
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