Research question #3: What prolongs the diagnostic interval (i.e., time from first medical consultation to formal diagnosis)?

Theme 7: Many providers attributed symptoms to less serious causes or made no diagnosis, thus delaying young adults’ cancer diagnosis several months or more after their first medical consultation. Participants who first presented at primary or urgent care often experienced significant delays during the diagnostic interval. Many young adults attended multiple appointments with several types of doctors, often receiving misdiagnoses or alternative symptom management suggestions before receiving the correct diagnosis. For example, one participant’s provider encouraged first trying a gluten-free diet to manage blood when passing gas_:_ “Initially, they said that it might be what I was allergic to gluten, so they asked me to try stopping eating anything with gluten.”[Participant 24, diagnosed at 39, colorectal cancer] Several young adults expressed frustration at their provider not ordering medical testing for ongoing symptoms. One young adult explained: “I had to go to the doctor like, three to four times before she ordered the MRI.” [Participant 7, diagnosed at 27, brain cancer] Urgent care evaluations typically resulted in prescription medication or other at-home remedy suggestions. Several participants went to urgent care multiple times for the same symptoms, such as one with ongoing nonspecific illness: “They’d give me an antibiotic and basically say, ‘Go figure it out.’”_ [Participant 3, diagnosed at 25, leukemia]._

Many young adults experienced a lack of follow-up testing or referrals to specialists and were forced to re-appraise whether they agreed with their providers’ less serious attributions or whether symptoms warranted seeking additional assessment. Most young adults trusted the information received at the initial appointment. For example, several young adults were told by a medical professional that their symptoms were most likely from stress, anxiety, depression, or lack of sleep, and they agreed with the plan to treat with medication, for example: “[The doctor said] ‘you’re probably fine, you’re sleep deprived. Here’s some Unisom, go home and get some sleep. And I’m like, “Okay.” [Participant 18, diagnosed at 23, brain cancer].

Conversely, some who did not trust the professional assessment they had received used online information seeking to find alternative explanations for symptoms: “Like, when the doctor told me it was lipomas, I looked up lipomas, and I like, read what they are. And I was like, “That doesn’t sound right, but like, he’s a doctor.” [Participant 11, diagnosed at 37, melanoma] After feeling brushed off or dismissed, participants’ self-advocacy abilities primarily drove their ability to seek additional care, as one participant explained:I didn’t feel like the doctors really believed me, and I had to advocate for myself pretty hard. I walked through, you know, several different doctors escalating up to the ultimate biopsy. But each doctor I would hear the same thing. I would hear, “You’re too young. The lump is too near the surface, and you don’t have any family history....” [Participant 22, diagnosed at 32, breast cancer]

Theme 8: The diagnostic interval was shorter when young adults’ initial provider encounter resulted in timely bloodwork, scans, or other tests; this was most common in emergency room evaluations. Only a few young adults had primary or routine (e.g., OBGYN) providers who ordered bloodwork or other clinical tests at the first appointment: “My general practitioner ordered an ultrasound and referred me to a urologist.” [Participant 2, diagnosed at 26, testicular cancer] One participant who benefitted from prompt clinical testing had shared their wearable device data at the appointment: “Once I let my doctor know about [my high FitBit heart rate] she ordered an EKG. And then I got blood work done the next day and they also wanted to do a heart monitor.” [Participant 20, diagnosed at 22, leukemia].

Most participants who were diagnosed promptly after medical evaluation were those who presented directly to the emergency room with severe symptoms; the emergency room providers ordered bloodwork and CT scans in nearly all cases: “They gave me a CT scan, they did a blood panel.” [Participant 8, diagnosed at 26, leukemia].