Table 2

Summary of key findings with illustrative quotes

Main findingSelected quotes
Men resisted the recommended treatment for a range of reasonsErectile dysfunction would really upset me a great deal” (ID2) (to avoid impotence)
I was very worried about the possibility of long term incontinence…the idea of having to wear pads in my underpants for possibly the rest of my life was not attractive (ID5) (to avoid incontinence)
“(urologist said) based on your history and my examination I think if you don’t have surgery you’ll be dead in 5 years’ (ID9); ‘(urologist said) you shouldn’t let this go too long, 3 months max, you should be on the table and get rid of it (ID1) (perceived pressure)
Some men’s resistance had a profound impact on their psychological well-being, life decisions and employment “So when someone tells you you’re going to die in 3 years and you make a decision not to have an operation—you’ve got to make some life changes…I decided to make massive life changes (ID4)
“Immediately after the diagnosis I was thinking, ok, so how do I finalise my affairs? (ID3)
“It’s a mental thing that you have to deal with every day… it plays on your mind (ID7)
“3 am in the morning when you wake up and you start thinking of how little of your life you might have left (ID2)
Some men distrusted conventional medicine and embraced non-mainstream treatments “It just looked like a money making experience for me (ID7)
“[I] found out a hell of a lot more about the limited choices that conventional medicine offers…slash, burn or poison, surgery, radiation or chemo (ID6)
Some men reported lack of supportive environments to make informed decisions about testing or treatment “He (urologist) said, ‘you don’t want to be mucking around with this, you know, it is cancer’…he really scared the hell out of me… I thought, I better do this, whatever it is (ID6)
“I felt very much alone because I didn’t have a doctor who I believed in (ID2)
Some men, over time, reframed the diagnosis and decisions made “I played that game for about 3 years, running around the world [seeking alternative ways of healing, treatment]…then I realised nothing was happening, I was fine (ID4)
As time went on that level of anxiety, with knowledge… and additional information, and knowing how rigged the medical profession operates in this, in this particular sphere, it has sort of gone down (ID6)