With the exception of one man, all the participants desired information that they deemed to be relevant to their needs as a gay men. Anthony, who considered himself a ‘success story’ recalled the lack of information or support that was available to him when he was
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initially diagnosed 15 years earlier; something he did not feel had improved within that time.
“If there had been a gay men’s support group, I would have gone to it. If there’d have been a gay men’s contact telephone line, I would have made use of it. If there’d been any publications I would have done, but there wasn’t. And to a great degree, there’s not now”.
(Anthony)
Ian, confirmed the current lack of available literature created for gay men. However, despite finding a resource from Macmillan Cancer Support, Ian wanted information that was specific to the type of cancer he had.
“There wasn’t anything for us to read, we did all our own research. And that was very generalised, as you say, it was very geared to heterosexual. There was a very limited amount of, I think
Macmillan did one gay men and cancer, which was very good, but talked in very generalised terms. You know, and for me, I needed something specific”
(Ian)
Alan, one of the two men on active surveillance, had not needed any specific information about how treatment would impact on any aspect of his sex life and had not yet sought it at the time of our interview. However, when I asked what type of information he may perhaps ask for in the future, his first concern was about whether anal sex may be
problematic. Despite stating he would ask for information if necessary, Alan assumed that his health care providers would inform him about anything he may need to know.
“I suppose the issue of sex-acts, I’ve never asked and nobody has ever mentioned it… I suppose in an ideal world if I felt I needed to ask then I would ask, I’ve never felt I needed to ask but it’s just a question of, I wonder whether anal sex is something… equally, I’m sure the consultant would have found some way of saying… You see I don’t know because I’ve never seen, never read anything that’s mentioned it. So do I infer from that that it isn’t an issue? That if that’s what you want to do, go ahead and do it?”
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Elliot, was also undergoing active surveillance. However, unlike Alan, Elliot expressed a heightened need for information so he could was better informed to make a treatment decision in the future. After undergoing a transperineal biopsy which resulted in an inflamed prostate, Elliot made the connection that his own sexual practices could have a detrimental impact on his health after undergoing such procedures, but was astounded that his health care providers were not aware of this risk.
“I had a transperineal biopsy… the way they monitor is excellent, you can’t fault it. But apparently, that caused me inflammation of the prostate now, there are sexual practices that could of actually aggravated that whatever, and… because they never talk about that, you know when I said to them in the beginning, is there anything sexually I should be aware of, they said no, carry on. The thing is, they don’t ask you what your sexual practices are… It’s like someone’s sexual practices and what they do are going to have implications, you know…”
(Elliot)
Several men described asking for information from their health care providers but that it was not always forthcoming. However, Christopher admitted that he may have been provided with answers to the questions he asked his consultant, but may not have digested what they were being told, resulting from the shock of being diagnosed. Christopher was one of the few men who had a urology nurse present at that time. Hence, he recalled how she was able to remind him that certain pieces of information had been provided to him but he may have forgotten.
“My urology nurse…a few times when I’ve been crying to her about certain things, I'd say why didn’t [consultant] tell me that... ‘Here, [mimics voice of nurse] he's told you eight times Christopher.’ So, I might have missed it, if I gave him the benefit of the doubt. There's a piece of my radar that says no, I don’t think I missed it, he never sat down and said, I'll give you twenty minutes Christopher, thirty minutes, whatever; what’s it like to be gay with this diagnosis? Never had that conversation. Never ever, ever said would you like me to help you find somebody who's gay, never… I think because I was dealing with, oh my god I’m gonna die, that was probably very low on my priority list. When that, oh I’m gonna die got moved off, I moved into a different area where I was kicking the doors down. I was asking for psychosexual stuff, I was asking to see an endocrine consultant because I wanted to know, what does testosterone
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do? What it’s like when, if my body needs testosterone and I've not got it? What’s it doing to me not having it?”
(Christopher)
Charles also remembered being given information at the time of his diagnosis.
“I do remember, he talked to me about radiotherapy… he may have mentioned chemotherapy, he certainly talked about the surgery. He described the surgery and he drew little diagrams. And he talked about what happened afterwards and he talked about the nurses, none of it went it. And I’m not stupid, you know, I’m quite an intelligent guy I think, but not one iota of it went in, I was just so shocked. All I could see was a big letter C and, oh god, I’ve got cancer, that’s all you can think about, nothing registered
(Charles)
Since being diagnosed, the internet had become one of Joshua’s main support sources for locating support from other gay men with prostate cancer and for seeking information about sexual aids, and drugs that could help to improve his sexual function. He described turning to the internet in an attempt to acquire more medication than his own medical team were prepared to prescribe. His quote describes the sense of apprehension he experienced prior to ingesting one and highlights that there may be potential dangers for men who use the internet for information as opposed to their healthcare providers.
“You know, they make their money, they’re not cheap. It’s like fifteen pound a shot. So I got eighteen, well I had, my bloody boyfriend nicked one didn’t he, he didn’t tell me, in one of these sessions with a bloke. And he tried one, I was really nervous about trying them, he was either drunk or had drunk a bit too much, or whatever, he was worried about not getting an erection, so he did it. I have to lock it away. But anyway, so I tried it and, so, yes you get them online and they make you do this prescription, do you suffer from this, do you suffer this? And they charge you twenty five pound for that bit and then you can order as many as you want. Next time you order you’ve got to pay the twenty five pound for them and that’s the cheap one, and it’s about the same price or even cheaper in America, they’re not cheap. But it seems that that’s quite a long time before my next appointment at the
hospital... I’m not telling my consultant when I get there that I’ve tried it”.