Hearing the diagnosis of penile cancer
Peter had a sample of his penis taken by a urologist: at his appointment following this, he...
This carried on for a matter of six, six weeks and I finished up he says he would take a sample of the skin of the penis like and he’d let me know what it was. Well when I was told to go back and see him, the day, he says “before I tell you” he says “I want you to understand that, something” he says “that it’s not life threatening.” I says “well before you tell me, you saying that, I think you’re going to tell me I’ve got cancer.” And he said “yes” he says “but if I had to choose which cancer I wanted it would be something like this.” So I know I went white because I could feel the colour draining from my face as soon as that word was mentioned like and I said to myself “right, there’s only one thing to do now and that’s get on with it and see what happens.” So he recommended me to a consultant.
Big D was given a diagnosis after a biopsy on his penis and circumcision and was subsequently...
How did the specialist break the news to you that you actually did have penile cancer?
Well that was after he’d done the circumcision, the biopsy and the circumcision, basically he decided that he thought it was possibly cancer and I needed to see another specialist that specialised in that situation. As I say even at that stage it didn’t bother me. I was relaxed about it. I think the only stage in the whole situation was basically when he said that he either operated and cured me or it killed me. That’s when you tend to think something more sinister is afoot but until then I’d had no qualms whatsoever about it.
Tom was diagnosed with penile cancer by a dermatologist but was taken straight up the corridor to...
My immediate thought was… I can’t really say shock because I’d already got in my mind because the dermatologist on examining me said he thought there was something else there and the inferences at that point were that it obviously it could be cancer, my wife was far more concerned, as I say, than I was at that point and I as I was fairly philosophical that ‘ok I’ve got cancer, there are worse cancers than I’ve got’ because I didn’t know anything about it but I, they told me immediately at the time of diagnosis that it was effectively a minor surgical operation, could probably put the scene right and it could be arranged immediately ah, so I there wasn’t any delays between being diagnosed and proposed treatment. It literally was a walk the length of the hospital to see the urology surgeon to decide on an operation and a discussion took place, and there was, as I say, almost immediate action, I really can’t fault it.
Peter had more or less diagnosed himself and therefore he wasnt shocked when told he had penile...
So what were your immediate thoughts when you were first given that diagnosis?
Can’t say I was shell shocked because I more or less self-diagnosed myself sort of thing like in my mind before it and I thought ‘if the worst comes to the worst it will be like… you know’ I was thinking all sorts of treatment like radiotherapy and all this lot and that and when he put my mind at ease like, it was one of the lesser cancers, well just like… lifted all things lifted off me, the concern and that – even though I was still concerned a bit about it, how it would turn out and what future come backs there were with it like and. As I say like I was really happy to hear what he said about the initial diagnosis like about when he turned round and said if he had to pick a cancer this would be one of them, that he wouldn’t be bothered, much bothered about.
The worst that Simon was expecting was that he might need a circumcision, so he was shocked to be...
So after about a fortnight I went to, it was a private hospital but they did NHS work, just, and I were, I was expecting, expecting at the worst, that I’d have a, what do they, what do they call it err total removal of the foreskin right, the circumcision, that was really what I was expecting. So I got, I got there about three o’clock in the afternoon and we just sat down like, a fancy place you know cup of tea and all. Next minute I was whisked in to see this the urologist consultant and he just felt at it and he said straight away ‘you’ve got cancer.’ Like I was totally gobsmacked.
Frank was given the blunt truth in his first consultation; he was glad the consultant was open...
No I think in a way when I had the first consultation and… was given the blunt truth, I suppose in a way I was glad that he was open and plain and clear about it. I would not have wanted anything to be hidden. That didn’t upset me at all. Of course, in the end his prognosis was fortunately not as – far more severe than what I did have to have done to me. No. I suppose I was being a bit fatalist and I was told I’d got cancer, I was told I had to have everything taken away, I came out of the hospital and I thought ‘well, there we are. It’s been a good life.’ [Chuckles]. It was only a few weeks later that I began to realise how bereft he had left me of any explanation as to how it – why did it occur? I still don’t know. What caused it to happen? I don’t know. Nobody tried to explain anything to me.
When I had the interview with the consultant surgeon – I mentioned just now that he was quite brutal about it – because he said that [hesitation] in all probability I would have to have a total removal of the penis, the scrotum and all the testicles and the urinary tube should be redirected. That took me a while to take in. I suppose eventually I had gone into a sort of stasis [chuckles].
Rather than hold anything back, David would much rather the consultant delivered a diagnosis...
I would say that it’s been that he has talked in a... there’s a certain bluntness, almost a certain coldness about it. …other medics I’ve dealt with have had more warmth I have to say. But I think it’s a difficult matter. So I would much, much rather he was blunt and direct and didn’t hold anything back at all than sort of in a much more cautious way. ...I think have to say I think I said before, I think that having the specialist nurse where it… it does is extremely helpful because I think the bluntness the thing is that you can only work out the what the implications or formulate some... the questions that you want answering… I mean I know it’s just standard isn’t it? To go and see the consultant and it’s almost impossible to think of the questions. You know all sorts of questions come to you afterwards and I think that that inevitably happens but I’d much rather I’d much rather know. I mean if he if I have to say to him ‘what’s the prognosis?’ and he said oh you know he might say ‘oh well I think you’ve yeah very good chance and should do…’ But what he what he will say straight away is well ‘you’ve a 60% chance of living over 5 years’. Which I suppose is slightly [chuckles] better than saying you’ve 40% chance of not living another 5 years. But you know precise... I mean that is a pretty that is pretty, a pretty big marker I suppose so if do have a return of it, if I’m you know if the 40 if it’s the 40% rather than the 60%, and have this return within 5 years then I’m then I’m not left in the dark then either. So I would rather have it that way. And I do think I do think perhaps it could be delivered in a less I don’t know somewhat cold manner. And yet he’s not a not a very formal sort of…man. But it must be it must be so difficult for them to be doing all that work with people and seeing I don’t know how many you know when he has one of his consultations in the morning I don’t know how many people he sees. 15? 20? 10?, 15?, 20? Dealing with all that and all those different emotions and all the rest of it potentially extraordinarily difficult. And then to have a head, you know, have your head straight and be able to perform the surgery, you know, perform the surgery and deal with deal with all the implications of that. It’s a phenomenal activity. It’s enough to drive most of us round the twist I would think with either anxiety or just run away from it. So I it’s it when I the more I think about it, you know, just talk about it it’s very understandable. And it’s better to be it’s better to be on the cold side and blunt rather than to be evasive and moving away as it were from the patient I think. Yeah.
John Z was left bewildered after a blunt diagnosis from two doctors with no further explanation.
Can you remember the language used when you were given the diagnosis of cancer?
[Slight chuckle] yes it was rather blunt really. He did say ‘that’s... oh that’s cancer. But I’ll get a second opinion’. With that he went out the room. Another doctor come in, examined me, said, ‘Yes that’s cancerous’ and that was that was all there was to it. It was left as that. They said, ‘You’ll be getting a letter’. And I come away bemused and bewildered really.
What were your immediate thoughts when you heard the word ‘cancer’?
What one normally thinks of... possibly the end of my life.
The way that Barry was told he had cancer is ingrained in his memory: his initial reaction was to...
[The specialist] came down to tell me that it was malignant, that the lump had been taken out but I had cancer on my penis and the words he used were “I’m very sorry to tell you... that the biopsy has come back, it’s malignant, it’s positive and your penis has got to come off.” And he just promptly got up and he walked away. So I just put my dinner to one side and started getting dressed to go home, because I just thought well, what more can they do to a bloke than like cut his penis off?
For him to come down and sit on the side of the bed and just tell me that it was malignant and your penis has got to come off and just promptly get up and walk away. That’s still, that’s ingrained in my memory and that will always stop there is, how I were first told about it and I wasn’t very, very happy. And like as I said, I told you my first reaction were throw my dinner to one side and start getting dressed and go home because to me, there isn’t much like then [hesitation] to be told that you’re going to spend the rest of my life – I mean I was only like about 51 – and having to spend the rest of my life without a penis, and how I was told I wasn’t very, very happy about it and all I wanted to do was just probably get out of the hospital and go and have a pint. To be quite honest with you I just didn’t want to be in the hospital. Probably if I’d have been told about it and he would have like consoled me and gone into, and told me that say like oh you’ve got cancer but we can do this, we can give you this and we can give you that or do the other. Then I probably might have thought, oh well.
After being told cancer was found, Mark was left feeling helpless: he had cancer but hadn't been told anything about it.
So after that initial operation you were told that there were signs of cancer. How did they disclose that? How did the consultant tell you?
It wasn’t the consultant. It was..I’d been in the local hospital about 4 days. And I’d had various visitors. I didn’t want any visitors. I wanted to be left on my own and it was, I seem to remember it was quite early doors. A gentleman had been, had come round to see me to make sure things were alright. I think I’d had a bite of breakfast on that particular morning. And he just came round and said, ‘Is it Mark?’ I said, ‘Yes’ and he pulled the curtain round. Why because there was nobody else in the room; there was only me. And he just said more or less verbatim ‘something I need to tell you. What they took away the other day was ulcerated and cancerous. They’ve not been able to take it all away. And there’s nothing more that we can do for you at this hospital.’ You really don’t want to hear that. You don’t want to hear that. You don’t want to hear the cancer. You don’t want to hear there’s nothing they can do for you. Because I’m just helpless. I’m laid down. I can’t get up, I can’t get about. I’m at the beck and call of everybody’s running around after me. And then I said to him ‘can you just, where does that leave me right now?’ And he said, ‘Well as you… as you lay right now you’ve got cancer’ and walked off. That was it. Very short, very succinct, very straight to the point and off. And I couldn’t berate him. I couldn’t get angry because I suppose it’s his job. You know there’s no easy way of telling anyone this if that’s… You either have it or you haven’t and if you’ve got it then you need to be told. And… it just leaves you… like I said I just didn’t know what to do. I didn’t know what to do. I didn’t know who to phone. I didn’t know why I needed to phone. My family could tell me where they were to the square yard when I phoned them. They could tell you to the square yard. It was the darkest day in this family’s history. We’re very close. And… I was inconsolable in hospital, completely inconsolable. I asked for something just to knock me out. Because I didn’t want to be awake because if I’m awake I’m thinking about it. I just didn’t want to be there. I didn’t want, I didn’t want to die. And as much as people may think otherwise, when people mention the word to you, you’re going to die. You’re going to die and that’s just it. And I was 46 and I had no intention, I didn’t want to be going anywhere. But still in limbo. I had yeah cancer, alright, where was it? He didn’t tell me where it was.
It can be anywhere on your body. He didn’t say where it was. I know that I’d had a procedure…on my penis. But I didn’t know whether it was on there or in my groin or in my lymph glands or anywhere. He didn’t say. He just said that it was… that I’d got cancer and walked away.
Paul was devastated when he heard he had cancer, thinking that it was a death sentence, although...
When a consultant sits down with you and tells you you’ve got cancer it’s like well it’s like a death sentence. It’s I was just devastated, even though I had a kind of idea anyway it doesn’t stop that initial, because when I did go to the other local to have that third operation, the reconstruction surgery that was the first thing the consultant asked me. He said, “Did they tell you at the other hospital that it is cancer?” I said, “Yes, they did yeh,” but it’s hard to explain it unless a person’s experienced it. It’s just devastating when you’re told you’ve got cancer but then like that consultant surgeon, the one that done the reconstruction surgery, he said, “Years ago when you told people about cancer it was a death sentence.” He said, “That’s not so today,” he said because they’ve leaps and bounds haven’t they with research so, but it still doesn’t stop that initial shock when they tell you like.
David was surprised to receive a diagnosis of cancer but not particularly worried because he had faith in the treatment: on reflection, he wonders if he had been in denial.
So what were your immediate thoughts on receiving the diagnosis of penile cancer?
I just I thought and having seen the consultant, I mean I suppose I was a bit I was surprised. I wasn’t particularly …worried. I … when the local the consultant at the local general hospital told me that it was you know likely that it was cancerous I think he he’d… I spoke to him on the phone actually and I think he said to me something like ‘Well the regional specialist I’ll refer you to the regional specialist and I know he’s very, very good and I’m sure he’ll see you very quickly’. So I thought well that’s fine, I’m sure it’ll be sorted. And when I when I met the consultant I thought he told me and he thought the chances of cure, you know, were very good. It may be that it if there was any return I might have to have the lymph nodes removed. So I was I he gave me that knowledge early on and, as I say I think earlier, that I felt the operation had been successful. Well I think it had been successful. And I just rather assumed that had cleared it so I never took the threat of cancer, it never struck me as being particularly serious. Now I it’s interesting to think about it now retrospectively, was that because I was just blasé or I wasn’t or was it because I wanted to deny it in some way, just saying ‘oh well I may have it… it’s kind of..’ I didn’t really want to acknowledge it and take any notice it? I don’t think it is… I don’t think that’s the reason. I just was I just thought it would, you know, it would it would go. I thought well I’m healthy. I am very healthy, you know been healthy all my life.
Ian doesnt think he was frightened because with todays technology if you catch it early enough...
What do you think were your main concerns and fears?
I don’t think I was frightened or feared in any way because… with today’s technology and things that are explained to you, you know, if you catch it early enough then you’ve got a chance , you know, so I didn’t let it worry me that way. I suppose I was worried a little bit but not, I didn’t go overboard with worry, you know I’ve never been a… I just let things come and, you know, if it’s got to be it’s got to be. But, they’ve got a good team at [the hospital] and I had a bit of faith in them, you know.
As the cancer was visible on his body, Colin wasnt that shocked when he was given his diagnosis...
What were your immediate thoughts and feelings when you heard ‘penile cancer’?
It was a strange situation really. It didn’t really shock me at first. Because obviously it was a situation is where I thought well they can probably treat these symptoms. Being on the outside of my body or being noticeable on the outside other than like having prostate or kidney or liver cancer or lung cancer which obviously was inside so I really had mixed emotions. You know that was that was the thing. It was a situation where it didn’t shock me. I suppose with people that’s got liver cancer or pancreatic cancer or other internal cancers, which they think well you can’t see what’s happening inside but at least they could see what was happening on the outside. And I think it was a shock but it was a situation where you...it weren’t so much of a shock as them saying ‘well you, you’ve got so long to live’. You know what I mean they, in other words they might have turned round and said, ‘Well we can’t do nothing for you’. That had’ve been a real kick in the teeth, as they say. That would have been.
Les thought he would die after he was given his diagnosis. He had watched his father die of lung...
What were your immediate thoughts when you found out?
I’m going, I’m going to die! [Laughs]. That was it I’m going to die. Because I remember driving home from when the surgeon told me it was cancer and we’ll refer you to the cancer hospital. I was driving down the road and I saw a bus coming at me the other way and I thought ‘well do I just drive across in front of that thing’ that’s what I was actually feeling. Do I just pull the wheel and just, but it doesn’t seem fair to the people on the bus as well but that’s how I felt. Do I just drive off a bridge or end it now. As I say my father had died with lung cancer when I was eighteen and that was quite an horrendous thing to watch. Because they certainly didn’t have the pain control and stuff they’ve got these days. I mean it’s still, it’s not a nice way to go either way but I just didn’t know anything about it. I could be, you just hear the word cancer and that’s it you just think ‘death sentence, I’m done for.’ So...
John felt he was going into a black hole when he heard 'cancer' because his wife and son had both...
So what were your immediate thoughts when you when you first heard ‘cancer’?
Oh I thought I was going into a black hole. You know I thought…..no that’s it. Nothing more, nothing less. You know that’s it. God I’m in your hands now. You know and that was it. I didn’t know. So why should I sort of get myself in a state. My wife had died, my son had died, I… then that’s going to be me, you know, at some stage. And then this oh…..then this the first specialist said ‘no, no, no, no it may not… it probably won’t be that’ you know so… Well I’m not afraid of dying you see. This is the thing. I mean if it happens when you’ve watched a 7 year old boy die with Leukaemia believe me you’re not afraid of dying. You know if he could do it the way he did then I could do it. And then my wife and then… yeah. That’s part of life, you know.
Paul was left stunned after his consultant drew diagrams showing what the surgery would do to him.
Oh well the last consultant urologist, the one that done the surgery, when he examined me the very first time, he just like got a sheet of paper and started drawing diagrams of the surgery what he got to perform. And that was all that was told, that was all that was told to me, and that’s why I’ll never forget that evening actually, I was so stunned, shocked when I saw the drawings of what he’s was going to have to do, it, it’s just, it’s indescribable really, it’s just horrendous. And that was all that was told to me really.
Colin thinks that no matter what information you find out, it is the treatment that is important.
But it’s like everything else. Once you’ve got it all you want to do, don’t matter what information, to me what don’t matter, or the person that’s actually got the problem, whatever information you get, it doesn’t cure the problem, it doesn’t stop the problem. All you want to do it get it… get in and get it sorted. You know, yeah it’s nice to read up on it so, for future generations and to give other people the advice. But when you’ve got a problem yourself, you know it’s no good looking at a bit of paper or a book and consoling yourself saying ‘oh well so-and-so had it and he’s got it and…’. It’s you personally that that’s the problem. Not a bit of paperwork off the internet. It is nice to have… have advice on it. It is nice to read up on it. But deep down you think to yourself ‘well what good’s a bit of paper when medicine’s got to cure me?’
John did not want to know any more than he was told at his specialist centre, although he...
It really is complicated all the possibilities… that well which one is it so you know I… I didn’t. I relied on what they told me and what the book’s… now I’m you know I’m a university graduate, I’m a former teacher. It seems strange but in fact I only wanted the information that I needed. I didn’t want any more and a friend would say ‘well don’t worry about things like that John. Let just listen to what you’ve been told. Don’t think about ‘what if’, ‘what if’. Get away from the ‘what if’ situation and that’s what I’m trying to do. And that’s why I’m in the middle of this waking up in the morning and feeling ‘what if’ you know. And it’s crazy you know. Because….’what if’ doesn’t… shouldn’t exist because I know that I’m going to be looked after. And there’s somebody there who will know what to do and if… it might be different for someone who’s not had the kind of treatment that I’ve had. My treatment’s been superb, yeh.
Frosty wasn't as downbeat as he thought he would be when he received his diagnosis: he had the support of his family.
So what were your immediate thoughts when you were given that diagnosis?
I wasn’t happy… But there again they’ve gone from seeing my GP to bump, bump, bump and seeing another surgeon in another hospital by which time the word resigned isn’t really what I want to say but by which time all I wanted was it to be dealt with and obviously the sooner the better because we all know or think – some cancers are different I know but – you think the longer it goes on the worse it’s going to get sort of thing and so you want to get it done so… I wasn’t happy but I wasn’t as downbeat and as down funnily enough as I thought I’d be. I had all the support of my family by then because they knew and that was when my wife was very, very good about it, my son and my daughter they were all very good … and basically I’ve always been a fairly cheerful bloke so you know I wasn’t, I wouldn’t say I was going out and dancing the fandango but I certainly wasn’t as low as one or two people who were in the hospital were when I kind of got in there and had the op. I think it’s just in people’s make up how they are if you know what I mean.
Rodger discussed things with his wife but she tended to worry more than he did; he decided to ...
What were your immediate thoughts when you received that diagnosis?
Can’t be me. But basically I’m one for not showing… worry. The wife always worries about things and I just say ‘look, we’ll take it at one step at a time. And at this stage I don’t feel ill… I’ll go and have the operation and see where we go from there.’ I was working at the time. I went into work and told them I’d got to go in for the operation, they were… sympathised with the problem and there were no problems at all with having the time off and I was back at work within three week of having the operation. But physically, I didn’t feel any different other than minus the end of the penis.
You talked about not disclosing any worries. How did you feel inside though?
Oh, well it’s very hard to say how you feel inside… I have tendency to try and blank things out... same with work. If I go to work I’ll worry and get the job done accordingly, but once I leave the gate I always try and forget it and… that’s through years of experience of, of being in … a situation, especially at work where the pressure’s great while you’re there but if you keep it and take it home, it gets even worse, so I’ve sort of got to the stage now where I don’t let things worry me at all to that degree… if I have a problem I discuss it with the wife but nine times out of ten she’ll have more problems than I will with the problem I’ve got, because she’s always whittling about everything, you know, so that’s all I can say really.
Last reviewed July 2017.
Last updated January 2015.