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Penile Cancer

Feelings and emotions

Having arrived at the point of treatment, men will probably have already experienced a mix of feelings and emotions (see ‘Hearing the diagnosis). This mix of emotions may continue in the lead up to the treatment and throughout its course. For some, the experience is hard to take in, especially if they have not had long to come to terms with their diagnosis. Men may feel confused or numb. Fear, anger and guilt are also common and uncertainty or confusion about what is happening can intensify these emotions. If men have not heard about penile cancer before, they may feel like they are alone in experiencing the illness, which can lead to a feeling of isolation.
 
Sharing thoughts and feelings with others is often the best way to cope with complex emotions (see ‘The support of others). Friends and family may also be experiencing deep emotions and sharing these can be beneficial for both parties. Some men may prefer not to talk to people close to them. Others may find it easier to speak to someone else such as a specialist nurse or counsellor (see ‘Professional support for penile cancer) or may choose to talk to fellow patients (see ‘Telling others).
Before having surgery, it is likely that men will experience a range of emotions. Of the men we spoke to, several talked about feeling nervous, anxious or scared during the lead up to their surgery and on the day of their operation.
 

Colin was anxious and stressed on the day of the operation. He wanted to get it finished.

Colin was anxious and stressed on the day of the operation. He wanted to get it finished.

Age at interview: 62
Sex: Male
Age at diagnosis: 62
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Oh yeah you’re very anxious, you know and stressed out, you know. Like I say it’s not necessarily fear and it’s not you think, ‘oh well, you know, oh you know’. It’s just one of them things. You just go in and that... get it done, I want to get it finished with. You know it’s no good it’s no good you know getting yourself uptight when you’re going to have drugs pumped into you and things like that. It’s bad enough having the operation without your heart giving up as they say, you know.

 

Simon was quite scared leading up to the operation.

Simon was quite scared leading up to the operation.

Age at interview: 65
Sex: Male
Age at diagnosis: 63
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Well [hesitation] I were quite, I were quite scared really. Quite scared, but. That first time I ever went to cancer hospital you know, you’ve got a dread in your mind. If somebody says ‘cancer’ you... think straight away you’re going to die within weeks don’t you. From what you say I mean it’s not like that but you’ve just got that, when somebody says to you ‘that’s cancer’ you think oh no! like. It, it’s quite shocking then and you. I was worried at first definitely.

 

Jordan was relieved when he rang the hospital the day of his operation and he was initially told...

Jordan was relieved when he rang the hospital the day of his operation and he was initially told...

Age at interview: 58
Sex: Male
Age at diagnosis: 57
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Yes I well [laughs] I’ll tell you how I felt. During the day, that day, that Monday, because I knew I was, I had to ring the hospital, the ward at half past eight in the morning to check that there was a bed there. And I couldn’t get through because obviously they were very busy. And eventually at half past nine in the morning, a very flustered nurse said, you know, ‘What do you want?’ I said, ‘Well I’m booking in for my surgery, is there a bed available?’ ‘No there isn’t a bed available.’ So I thought to myself, ‘Yipee, you can put it off.’ ‘Ring back at lunchtime.’ So I rang back at lunchtime and there was a bed available and that was that. So, I just didn’t want it to happen and wished it would go away, and… hoped for any other way other than go through the surgery.

 

Rodger felt nervous before the operation, but he doesn’t worry about things a lot and he didn’t...

Rodger felt nervous before the operation, but he doesn’t worry about things a lot and he didn’t...

Age at interview: 65
Sex: Male
Age at diagnosis: 63
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Nervous (laughs) Nervous. I was nervous going to the hospital... to the degree that obviously everybody was going to leave, but I knew that I was only in for the night and the next morning I was going to have the operation straight away, so I didn’t have the time to get myself worked up- as I say I don’t worry about things a lot – and, and he came to see me in the morning and he said, ‘Are you alright?’ I said ‘yes’ he said ‘you realise what’s happening?’ I said, ‘Yes’ he said ‘well you’ll be down in half an hour and you’ll be back in the ward within two hours, hopefully if everything’s gone according to plan...  and we’ll take it from there,’ and they did. So I wasn’t too apprehensive at what was happening because I knew that I had to have it done, in a sense.

Although some men felt anxious before their operation, many said they knew it was something that had to be done and they wanted it over with as soon as possible. Whilst Michael didn’t have any fears about surgery he simply wanted it to be over. Steve was happy to put his trust in the professionals treating him and that the best strategy was to stay calm. Having experienced previous operations, Tom felt the penile surgery was relatively simple and therefore he was not worried. Leading up to the operation, Tim was more excited than nervous, and said that in a strange way the new technologies and experiences made it quite fun. Frosty felt on edge a few days before his operation but he felt calm the night before. Having access to good information about what to expect and feeling prepared helped some men to cope with their emotions (see ‘Information on penile cancer). Others just wanted the doctors to go ahead and do what was needed.
 

Michael didn’t have any fear but he felt a little anxious about the operation. He wanted to get...

Michael didn’t have any fear but he felt a little anxious about the operation. He wanted to get...

Age at interview: 79
Sex: Male
Age at diagnosis: 77
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Leading up to the surgery, did you have any fears or anxieties?

Michael' No, I don’t think so. No fears because I wanted it done didn’t I? But perhaps I was a little bit anxious.

Ann' Well, you’d be anxiousness but I think...

Michael' Not that much to worry about was there? I was so worried about I want to get it over and done with so I, you know, I wasn’t anxious about the operation or anything. It’s something you want done and get it over and done with like.
 

 

Steve has always had the philosophy that he shouldn’t worry about what he can’t control.

Steve has always had the philosophy that he shouldn’t worry about what he can’t control.

Age at interview: 71
Sex: Male
Age at diagnosis: 65
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I’ve always had the philosophy in life that I’ve got no control over. I just go through it and see what happens. Because I can’t worry about what I can’t control. And I ain’t got no control over this and just stay calm- these guys know what they’re doing, I’ll let them get on with it. It’s if they make a mistake you hopefully you don’t wake up the following day so you don’t have to worry about it. But no I didn’t worry about it, I just knew that it gotta be done. And this obviously was the only place in this area of the country that was going to do the operation and they must be the experts.

 

Tom had previously had surgery. He viewed the operation on his penis as similar to having an...

Tom had previously had surgery. He viewed the operation on his penis as similar to having an...

Age at interview: 71
Sex: Male
Age at diagnosis: 69
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Did you have any fears or anxieties leading up to the operation?

No, no I’m not given to that nature. I’m not really that kind of a person, as I say I’ve had major surgery in a number of things and minor surgeries over a period of time, for various operations and as far as I can see, surgically, this one was very little different than having an abscess on your tooth cut out, you know, and things that you know so, I wasn’t too worried about it. Obviously it’s in a sensitive part of your body and even thoughts of it bring tears to your eyes but you know I could live with that. If I was going to get effectively a cure then I thought that that was small change compared with what could happen.
 

 

Tim was quite excited by all the technologies and the new experiences.

Tim was quite excited by all the technologies and the new experiences.

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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Right, so about this time my feelings generally was actually being quite excited by all the, the all the technologies and all the new operations, all the new experiences that were going on. So it was really quite fun for me in a strange way. And I think it was the family and friends that were getting err, getting more nervous. It was a time also that I had to make arrangements at work for time I was going to be off so I had to tell them you know what was happening and I found the best way with that was to actually be as open as possible with people, certainly with my immediate boss and the HR department. I had to tell them formally and make arrangements with them.

After penile surgery, men may again experience a range of emotions. A number of men talked about feeling relieved that the operation was over and a few felt a sense of joy that they had survived the procedure. Les was ‘chuffed’ that cancer hadn’t killed him and although his penis looked different it was still functioning as it had done before his operation.
 

After the surgery Jordan felt glad it was over and he was pleased that he had done it.

After the surgery Jordan felt glad it was over and he was pleased that he had done it.

Age at interview: 58
Sex: Male
Age at diagnosis: 57
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After the surgery, can you remember how you felt like?

Glad it was over. And hopeful, hopeful that it had done the trick, and that I might have a full recovery. And pleased that I’d done it, there’s no doubt about that, because mainly because I felt that I was doing what my family wanted me to do. Had it been me – and I think a lot of men do tend to leave things, when they shouldn’t do, but obviously their love of me and wanting me to have a productive life and live on a bit longer, I felt I’d done it for them as well so… That’s as much as I can say about that.
 

 

John felt relief after seeing the results of the partial penectomy and reconstruction. It was...

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John felt relief after seeing the results of the partial penectomy and reconstruction. It was...

Age at interview: 75
Sex: Male
Age at diagnosis: 74
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How did you feel when you saw the results of that?

Do you know in a... I could only say one word' relieved. Because what I’d been hiding for months was now out. And it wasn’t as bad as what I’d be what I thought it would be, you know. And that’s what’s happened all the way through, you know. Relieved. I you know… it was something I was.. I don’t like hiding things and it was something I was hiding and it was affecting me and it it’s gone. I mean it’s there now and I live with it and people know what I’m living with.

So the results were as you expected them to be?

Well as I as I was told they would be, yes, yeah. They’re better than I expected, better than expected. I mean I don’t have a bag. And that that’s… I don’t know I mean if this is being used for anyone else... I just feel so much for people who have to wear catheters of any form.

That was just… I just wonder I mean… oh I don’t think it’ll happen again. I mean I don’t think I’m going to have operations like that again. I don’t think I would let them but to have that is just…. unbelievably sort of… well just…. you know and I went through the thoughts of that and when that was removed I, you know, I went in to see the nursing err the nurse and she checked everything and she said, ‘Well it’s alright. It should be alright’ and she removed this. And I have never felt so… sort of relieved in my life, you know. So tell people that, you know. It’s hell. I mean it’s… it’s an awful feeling.
 

 

Tom was surprised to be out of hospital within 24 hours of his operation and not inconvenienced...

Tom was surprised to be out of hospital within 24 hours of his operation and not inconvenienced...

Age at interview: 71
Sex: Male
Age at diagnosis: 69
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I had an operation whereby they removed the whole of my foreskin, they took some (for want of a better term) some lumps off the side and the end of my penis and I didn’t feel a thing because obviously I was unconscious at the time. I was rather surprised to be out of the hospital within 24 hours back home and not really inconvenienced too much. I’d obviously a lot of swelling a lot of disfiguration but all my bodily functions – I could go to the toilet, I could pass water without any problems, and I was sort of, well quite, quite relieved that that particular part of it was over.

I was told from Day One that surgically the operation had been successful and would have to wait then for the final results and things, that’s obviously the final results, th-that came through, they said ‘yes everything appears to be ok. You do not need further treatment.’ That was somewhat of a relief because I, it wasn’t the operation that was causing me any anxiety but if I had to go for further treatment, and what would that treatment be and what would the effect be, you know, one associates with cancer all your hair falls out, everything happens and things like that and I didn’t fancy a course of treatment and one had to consider even refusing a course of treatment at my age is it necessary you see?
 

Whilst some men may feel a sense of interest in the results of the operation, others may experience a sense of fear and trepidation. Jim said that he felt no sadness, but was glad the operation was over and interested to see the results. John Z however was reluctant to have a look at his penis.
 

Jim was interested to see how much had been taken away after his partial penectomy.

Jim was interested to see how much had been taken away after his partial penectomy.

Age at interview: 60
Sex: Male
Age at diagnosis: 58
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When you came to can you describe how you felt?

Tired. There was there was no feeling of sadness or anything else particularly. I think I was glad that the operation had gone. I was interested to see really how…. how much had been taken away. But I was sort of facing it straight basically. And I’m glad I did.

How long was it after the operation before you did see the results?

Quite soon I think. Quite soon. I suppose once I can’t remember exactly but it might have been in... no I don’t think it was in the waiting room... in the recovery room sorry. I think it might have been when I went back down and I went into the bed in the ward. I think it was there. So it was... it wasn’t long. Within roughly an hour after the operation I suppose.

How did you feel when you did see the results?

I was okay with it. I was okay. I wasn’t feeling you know.… maybe sort of I was…. he took off really that it was the second choice of the two choices that you know it wasn’t just the first choice of taking the cap off, drilling out the cancerous part and putting the cap back on. It was the second one of actually amputation. And that I knew was going to be one of the choices. And it just happened to be the one that he had to do. I trusted the consultant to make the best decision. And you know I’ve got no doubt that that was the best decision.
 

 

Initially, John Z daren't look at the results of the operation. When he did look he was shocked and was afraid he would have to wear a catheter for the rest of his life.

Initially, John Z daren't look at the results of the operation. When he did look he was shocked and was afraid he would have to wear a catheter for the rest of his life.

Age at interview: 68
Sex: Male
Age at diagnosis: 64
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So how long after the operation was it before you saw the results of the surgery?

Going back to being a coward I daren’t look. I could see the tubes coming from my pyjamas and a bag that I knew I’d got a catheter in. But I didn’t look anything until a nurse come along said why hadn’t I had a shower that morning or a bath. I said, ‘Well I didn’t know whether... what... whether I was allowed to or not or…’ she said ‘oh yes you need a shower’. With which she undone some bandages that was holding the catheter against my body. Took them away, she said, ‘You’re alright now. You can go into the shower’. I said, ‘Right, fair enough’. And I went in and had the shower and but then I looked down [slight chuckle] and see what’s happened and… that was about it, you know. Apart from, I hadn’t looked previously to see what had been going on.

What did you think when you saw the results?

Well shock really. I thought well I’m going to have to have this catheter for the rest of my life and but then they said, ‘No we will give you a trial without it’. I felt better then because I’ve heard of people having the catheter in and it’s causing trouble, so I thought well yes I’m happy to have it out. Which I was, yes [chuckles].
 

Seeing the results of surgery, even if men have been told what it is going to look like, can be shocking at first. Some men were surprised at how much had been taken away. When first seeing the results, David took the assumption that everything would be okay. Despite more being removed than he had expected, Steve decided he had to live with what he had and shouldn’t worry about it. For some, accepting the results of the surgery and looking at the positives was important.
 

David had a sense of uncertainty about seeing the results of his operation but doesn't remember...

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David had a sense of uncertainty about seeing the results of his operation but doesn't remember...

Age at interview: 70
Sex: Male
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How did you feel when you first saw the results of the operation of on your penis?

Alright really. I mean I…there’s a certain amount of curiosity or not curiosity or uncertainty. That you wonder how it will you know work and function, the rest of it. But I think I just accepted that this was happening and therefore it’s likely that things would look better and improve from the first you know from the first sighting of, you know, the first looking at it. I kind of again worked on this assumption it would be okay, you know. And it turned out it was so I don’t remember ever feeling any great concern. But again I mean I don’t... going on about it so much but I do think it had made a difference having that other big operation, you know. You get more… somehow the head get the mind gets more tolerant of these things [laughs]. And I think the other thing probably being older helps as well. I don’t know. Who knows? Who knows?
 

 

Steve was surprised when he saw the results of the operation; however he decided he had to live...

Steve was surprised when he saw the results of the operation; however he decided he had to live...

Age at interview: 71
Sex: Male
Age at diagnosis: 65
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And how did you feel when you came to?

Well the first thing you do is you look and that was a bit of a surprise. But I then decided that I’d got to... live with what I’ve got- live the life that I’d got and that’s not to worry about anything else and luckily [Name] was of the same attitude so that’s fine.

How much did they remove?

About 2 inches.

Is that more than you expected?

Yes. Yes he said that they was only going to take a little bit [chuckles]. Maybe that is a little bit but it’s a lot to me [laughs].

So were you shocked when you saw it or…?


Surprised not shocked, surprised. I just…. I don’t know…. I think I’d come to the stage where I could accept almost anything anyway so and the actual fact not to wake up with that sore painful… penis is better… it was great for a few weeks. As I say it did… the lichen sclerosus has come back but the cancer hasn’t so…
 

 

Mick was pleased with the results of his operation. It was a little bit smaller, but it was just...

Mick was pleased with the results of his operation. It was a little bit smaller, but it was just...

Age at interview: 69
Sex: Male
Age at diagnosis: 67
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So what did you think when you saw the results of the operation? How did you feel then?

Alright. Because, like I said, there was no pain. And when I see it I thought well…. it’s just going to.. it just looks the same. It was a little bit smaller right but it’s just the same. Same penis like you know. It was same you know... end. I thought no it’s just that stitching round it was... that was it. I couldn’t see it properly because it was bandaged up. You know what I mean you are bandaged up round there...’til they take it off when you go and get your bag away from you, when you go back the second time. You get the bag, they take it off. And when I looked... oh. They haven’t you know never did what they said they’re going to do. I thought they must have just skinned it and just wrapped it, you know took all the badness away, all the cancer away, what there was there and what they thought it was. And they must have checked it and then like rolled it up somehow and just stitched it. You know I don’t how they do it but that’s how I’m thinking. That’s my version of it. But like I say I never had no skin graft.

So am I right in saying you were pretty pleased with the results?

Yeah. 100% pleased.
 

 

Whilst it was a bit of a shock to see, Frosty was more impressed by the results of his surgery...

Whilst it was a bit of a shock to see, Frosty was more impressed by the results of his surgery...

Age at interview: 68
Sex: Male
Age at diagnosis: 65
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How long was it before you were able to see the results of the operation?

Well what I’d got left you mean? [Chuckles]. Probably the third day, third or fourth day, can’t remember exactly. First two days I know definitely I was all wrapped up and just had the pipe coming up from – that was wrapped up down there. And it was the – it must have been the fourth day because the third day they changed the dressing on my leg where they’d taken the skin for the skin graft and it was the day after, they the top surgeon came in himself, think he came about half nine, ten, pulled the old curtain round and they were all standing round and prodding – I won’t say prodding and looking but you know what I mean [chuckles] so… and he said, “Oh” he said “that’s great. Ooh I’m pleased with that [Name]” he said. I said “You’re pleased with it!” [laughs] so I made a joke or something and…. because obviously I’m laying flat down, I can’t see it at the time but I saw it later if you know what I mean. The fact – bless her it was the Macmillan nurse came out and said, “Oh, I hear they’ve taken the band…. and hear everything’s alright [Name]” [Name] then became [Name] at the end your, you know, so she sat me up and I could see it and it, you know, obviously it was a bit shocked because it wasn’t the size it was when I last seen it, [chuckles] if you know, but as I said it improved within a couple of months of having the op and you know now basically now it’s not a problem at all, if you know what I mean.

I can only say that the fear and thoughts I had prior to starting the operations didn’t, didn’t come about if you know what I mean, they… I was more impressed with what they were able to do and what they’d done than I thought I would be but I’ve always been a person my cup’s always been half full not half empty which he said helps.
 

A few men told us that they felt very shocked when they saw the results of their surgery. The levels of shock the men experienced differed considerably and may be linked to each man’s expectations about their surgery. Paul and Mark did not expect to have such drastic surgery and they felt very shocked and distressed when they first looked at their penis after their operation.
 

The first time Paul saw himself in the bathroom mirror after his operation, he was very shocked...

The first time Paul saw himself in the bathroom mirror after his operation, he was very shocked...

Age at interview: 61
Sex: Male
Age at diagnosis: 59
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The first time they would let you go to the bathroom to have bath – a shower, sorry – because for the first three or four days they wouldn’t let you have a shower like. But when I went into the bathroom and saw myself in the mirror well I nearly died of shock. You know when you see that there’s hardly anything left, that’s...

So did they remove more than you expected them to remove?

Yeh.
 

 

After surgery that involved creating a slit down his foreskin (a dorsal slit), Mark was very...

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After surgery that involved creating a slit down his foreskin (a dorsal slit), Mark was very...

Age at interview: 48
Sex: Male
Age at diagnosis: 46
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And I knew… I didn’t want to, I didn’t want to have a look at what they’d done. I didn’t want to put my hand down there. I just didn’t. I knew that something had gone on but I didn’t know what it was… the second day, 2 days after the operation, I wanted to go… I had a bag on, I had my bag on for my urine and everything else. But, and I had two drains on. But I wanted to tidy myself up. So the girls, couple of them, got underneath my arms and I’m a big fella, I take a bit of carrying. But they took me to the lavatory. And I took my underpants down and when I saw what they’d done, I collapsed.

I wouldn’t mind admitting, and if there wasn’t a button on the floor. There was a button towards the bottom. And I pressed it. And very undignified, I was there, with my drains and my bag, and my privates in a terrible state. And just... the most upset that I’d ever been in my life. Because nobody at that point had told me anything. Nobody had told me anything. They’d done what they call a dorsal slit, from the top of the penis to the end. And for all intents and purposes opened it up as you would a pork sausage. Top to bottom and opened it up. And I had a bag on. And I just didn’t see any way forward. I remember that was the lowest I’ve ever been in my life.

But I can only describe just being.. I just.. I’d never been as horrified in my life. I’d never seen anything as bad….on anything, as I, as the sight that I saw when I when I saw my penis for the first time after that.

I can’t describe how it felt, I can’t. I can see it in my mind’s eye now and I just… it was just horrific. And I know that it had to be done and I know that...that that’s clearly because that was…that’s I presumed that was a dorsal slit. He’s told me I was going to have one so I presumed that this is what it is. But I just remember thinking ‘Jesus, there’s got to be an easier way of doing it than that’. You know did I have to have this happen to me? Did this really have to be done? And I just...I did honestly feel like a piece of meat. I felt like I’d been given scant respect. But you’re going to get ideas like that in your mind at that time because you’re confused. And I didn’t think that people were helping me particularly. It was the first time I’d been in hospital. Which is itself is a big thing as well, it tied in with that as well. But it was... it was horrific. Absolutely horrific. I understood it had to be done and I’ve never collapsed in my life. Never ever. I’ve never fainted, never collapsed. But I did. Just I’d never... I... just the shock of it, I’d never seen anything like it. It was awful.
 



Last reviewed July 2017.
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