Table 2.

Selected patient quotes related to diagnostic process and length of time to diagnosis

Concepts	Illustrative patient quotes
Several tests and visits	“The dermatologist referred me then to an oncologist but the oncologist didn’t know anything about it either so he referred me to [XXX] Cancer Center, to a doctor at the [XXX] Cancer Center” (patient 2)
Misdiagnosis	“She looked at it and felt it and said ‘Oh, it was really pretty small,’ she said ‘I think it’s just some fatty tissue, I don’t think it’s anything to worry about’” (patient 11) “I thought it was the beginnings of an infection, you know, I thought I had, infection related, that’s why the lymph node was reacting so I went to the doctor for a consultation on it” (patient 1)
Lack of information	“It’s like, there isn’t a lot of information out there” (patient 2) “Not a lot of people are familiar with it, at all” (patient 17)