Table 1.

Topics and patient quotations

Topic	Quote
1: Diagnosis/Stage	“I asked him because I didn’t know what type of cancer I had because the fact is, I found it myself.” “I asked was the mammograms the possible cause of the cancer or does it increase the size of the tumor”
2: Treatment	“[She asked] why she couldn’t get radiation instead of chemotherapy.” “I don’t think I had a clear understanding of what chemo is, I know it attacks the healthy cells as well as the bad cells, and I just don’t think I understood exactly what it does to the body.” “[I asked] about why the treatment was so aggressive, I guess I was reading everything on the Internet.”
3: Side effects	“I just wanted to know how quick I would lose my hair because I had, like, Oprah hair, real thick.” “I was concerned about what my energy level would be and they don’t tell you. You could read the side effects, but they don’t tell you exactly how bad this is gonna be.” “I wish I would have asked about steroids, but I’ didn’t know anything about that. I’m new to the game, I wasn’t aware. “Long term, what’s going to go on if I survive five years from now, are there any effects of this?”
4: Goal of Treatment & Prognosis	“I did ask her what the point of chemotherapy was since they—we had the lumpectomy so it was all removed.” “I wanted to know was this gonna be a cure; I guess it’s maybe a dumb question. I wanted to know was this a 50–50 chance or a 90% chance that this treatment was going to knock out all the cancerous lymph nodes that they found, that’s what I wanted to know. But I didn’t ask that because I was afraid to ask that.” “I did ask what would happen if I decide not to take the treatments.”
5: Support Services	“[People should as] if there are any programs that the hospital has that could help with bills and stuff because they do, they got a bunch….”
6: Treatment schedule	“[I should have asked] about scheduling because when you’re new to the process, there are apparently things that happen that…longstanding people know and the newcomers don’t know, like the flow of your appointment day.” “Ask your doctor all the information that you think you’ll need to know, where would you go to take the treatments, how big of a dose, how long of a dose, I was here for like two hours.” “I did ask her can I take breaks for holidays or vacations because I was going to see my daughter when I was taking chemotherapy, but I had to wait until I finished, so I did.”