Colin and Patsy - Interview 11

Age at interview: 62

Age at diagnosis: 62

Brief Outline: Colin underwent a partial penectomy with surgical reconstruction in 2010. The return of the cancer resulted in a total penectomy being carried out. He is currently waiting to have an inguinal lymphadenectomy and a scan to determine the extent of the disease.

Background: Colin is a white male. He has two grown up children, both in their forties. Although now semi-retired he used to work as a pub landlord.

More about me...

When he went to his GP to have some skin tags removed Colin asked to have a prostate test for cancer. He had a pimple on the side of his penis which bled occasionally but he had had that for two years and thinking it was a wart was unconcerned. His GP however referred him to his local hospital where, after a biopsy, he was given a diagnosis of penile cancer.

He greeted this diagnosis with mixed emotions. He wasn’t shocked but regarded the whole thing with disbelief – he couldn’t believe it was happening to him. He was given details of the counselling service and the Macmillan nurses but didn’t follow them up as he considered there to be others in greater need of them. At that point he believed it could be treated successfully because it was external to his body.

Colin was referred to a Specialist Penile Cancer Centre where they gave him full and frank information. His niece also researched the condition on the Internet. He thought it was good to have so much information but just wanted to get on and have the treatment.

Colin underwent a partial penectomy with surgical reconstruction. Unfortunately, after surgery he found that more lumps had appeared on his penis. He asked about the possibility of having radiotherapy, but was told it may have adverse effects and he should wait to let things settle down.

Three months after the operation he returned to see the surgeon for the fourth time. The penile lumps were thought to be the result of an infection but when a second opinion was sought, the lumps were excised and a biopsy carried out. The biopsy showed the presence of cancerous cells. This meant a hospital readmission and a total penectomy. Colin was quite shocked this time at how much of his penis had been removed. He is now waiting to have a bilateral inguinal lymphadenectomy and for the results of a scan to determine the spread of the disease. He knows that when his treatment is completed he will have to have regular check-ups for five years.

Only four weeks since his last operation Colin has to sit down when he uses the toilet. He feels as though his life is on hold and that he can’t get answers quickly enough. He feels angry that it has taken over twelve months to reach this stage when he had been pressing the surgeons to take action sooner. He kept saying it was getting worse but feels that no-one really took him seriously enough. Both he and his wife feel that there ought to be an automatic procedure after being diagnosed with penile cancer – total penectomy and inguinal lymphadenectomy possibly followed by chemotherapy.

 

Colin did have a bit of soreness but he just passed it off as a general body function.

It weren’t really a concern as such. It was there and it didn’t really, it seemed to progress more when I’d had it messed with than it did while I’d got it. Yes I did you know I did have a little bit of a soreness occasionally there which I just passed off as general body functions or things like that. It wasn’t a concern to be untoward, which obviously I never thought it would have been cancer. You know I just thought it might be some kind of wart or something, you know, but that... And that was it. So… it wasn’t a concern. It wasn’t… I didn’t even take no notice of it.

While having some skin tags examined, Colin showed his GP a pimple on his penis and asked for prostate and testicular cancer checks.

Well what I actually did, I went to the doctors for a couple of skin tags in, from the inside of my leg, or the inside of my thighs I should say. And … and while I was there I asked him just to check, he checked me for prostate for testical cancer. And just a general medical check-up as well. And I did explain to him that I’d got a small growth or pimple on the side of my the gland on my penis. And which he actually examined. And he said, ‘Does it does it bleed?’ and I said, ‘well it has on occasion’. And he asked me how long that I’d had it. It must have been couple of years. Which up until then it never ever given me any problems, no problems at all. And to which he went onto the... computer and typed a letter out for me to go up and see the urologist and the local hospital. At which…I think it was a week or maybe 10 days later I went up and seen him. And he said that it was penile cancer. Which obviously I’d never heard of penile cancer but he did explain to me after that it was cancer of the penis basically. But they couldn’t really give me... confirm that due to a biopsy being taken. Of which approximately a couple of weeks after I went back in, they give me a biopsy, took a biopsy off it. And it was confirmed that I’d got penile cancer.

Colin's doctor asked him how long he had had the pimple on his penis for and if it had bled.

I did explain to him that I’d got a small growth or pimple on the side of my the gland on my penis. And which he actually examined. And he said, ‘Does it does it bleed?’ and I said, ‘Well it has on occasion’. And he asked me how long that I’d had it. It must have been a couple of years. Which up until then it never ever given me any problems, no problems at all. And to which he went onto the...computer and typed a letter out for me to go up and see the urologist and the… the local hospital. At which…I think it was a week or maybe 10 days later I went up and seen him. And he said that it was penile cancer. Which obviously I’d never heard of penile cancer but he did explain to me after that it was cancer of the penis basically. But they couldn’t really give me… confirm that, due to a biopsy being taken. Of which approximately a couple of weeks after I went back in, they give me a biopsy, took a biopsy off it. And it was confirmed that I’d got penile cancer.

As the cancer was visible on his body, Colin wasn't that shocked when he was given his diagnosis because he thought it would be easier to treat than something inside.

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.
 

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?’

If anyone wants to know anything about Colin's condition he tells them, he's not embarrassed, but as the news spread it got distorted and exaggerated.

At that point, after you had just been given the diagnosis, did you tell anybody else?

Yeah because …told the wife. Children, they knew. And then obviously it’s like ‘Chinese whispers’ then. Everybody starts to get to know. There was cases where I was… well it is a bad illness, when I was seriously ill and I got bladder cancer and it everything started to get out of out of all proportion then. There was people saying that I’d died with a massive heart attack, I had got bladder cancer, I was seriously ill. So really deep down it’s just what ‘Chinese whispers’ are. It gets from bad to worse and it snowballs into all out of proportion. But yeah the immediate family knew. Everybody...you know, which I think it’s only right for them to know. I don’t…I’m a person that never holds anything back. They want to know, I tell them. I don’t... I’ve got nothing to hide, you know. No that’s the situation I’m in, you know. I mean even the neighbours they say ‘well you’ve been to hospital Col’, all this ‘how are you?’ And I tell them the problem. I’m not embarrassed by it. Which I think is another thing that you shouldn’t be. More so I seem to be humorous about it. You know and they’ll say like if they ask me, I say ‘oh the pimple on my dick’s been sorted’ [laughs]. There’s no there’s no need to be remorseful and aggressed about it. And that’s the way to look at it. You’ve got to… and that sort of attitude, where you’ve got to go through life.
 

People were shocked when Colin told them about his diagnosis, they thought he meant that he had prostate cancer.

How did other people react generally when you told them that you had penile cancer?

Shocked. Shocked in the sense where they thought I meant prostate cancer and everybody I spoke to and explained to what it is had never heard of it. And obviously I explained to them that it was very rare. And they were they were shocked in other words, you know. The word, the actual word ‘cancer’, shocked everybody I think in a sense. It’s the actual saying that you’ve got cancer that’s the problem.
 

After surgery, Colin developed a lump that slowly got bigger and was eventually removed with another operation.

Colin' I said to [wife] I says, the wife, I said, ‘It don’t seem right’. You could actually tell you know what I mean? I could actually tell it sort of don’t feel right. It wasn’t sore or tender or anything. It seemed to have healed up everything fine. But this lump seemed to be getting bigger.

 

Patsy' We’d seen him 3 times, hadn’t we? With the lump. And each time they said, ‘Well we’ll wait’. But it wasn’t actually the main one we saw. It was one of the…

 

Colin' Understudies.

 

Patsy' Understudies.

 

Colin' And he didn’t know what it was. ‘Well I don’t really know what it was’ and he said, ‘It looks like an infection’. That’s what he said didn’t he? And he said, ‘Well I’ll squeeze it’. I think he was trying to... to break it and… I said, ‘Bloody hell’ I said, ‘You’re hurting me’, I said you know. He said, ‘No’ he said ‘I thought there might have been a bit of puss there’ he said as regarding an infection he said, ‘Because it looks like an infection. It doesn’t look like the cancer’s come back’.

 

Patsy' So he called the main doctor in to have a look. And he suggested that another operation must be undertaken...

 

Colin' To remove the lumps.

 

Patsy' To remove the lumps and see exactly what it is. I said, ‘Well has it come back?’ He said, ‘We don’t know until we operate again’. As they normally say, they can’t tell you. And in a matter of… two weeks you were in again, weren’t you? For the second operation.

 

Colin' No it was four to six weeks and I was in four weeks.

 

Patsy' Yeah that was it.

 

Colin' Fourth week.

 

Patsy' But we did stress please get him in as soon as you can.

 

Colin' Yeah. Yeah I don’t…

 

Patsy' Because it’s the waiting that gets us.

 

Colin' And I did say, and I did say I... if whatever you do I just want to live. If it needs to amputate everything, take it away. I’d sooner live without it than to suffer with it, you know. And... that’s what exactly what I said to him. Because by all accounts when it starts up again or you don’t get it seen to for a long, long time it actually travels down the penis- starts coming down the shaft and everything then obviously into your bladder and into everywhere else. Which I didn’t want. So consequently I said, ‘That’s it’, you know.

 

Colin thinks humour is a healer: being open and honest is the best policy in life.

You both mentioned the positive attitude  and Colin you said humour. Do you find that’s a good strategy for coping with the illness?

Patsy' Definite, yeah.

Colin' Oh yeah we’ve had a lot of  upsets in life where you know like where we’ve had this or we’ve had stresses in life, problems in life. And I think humour I think is an healer in itself. To be open, honest and humorous- I think that’s the best policy in life. Where… it’s a tonic. You know it’s a tonic in life where you can... and it eases the burden better. And people who you talk to, instead of them crying in front of you and saying ‘oh you know, oh you know, oh, you know’ one thing or another as regarding ‘heard of this and heard of that’. It’s a humorous where they can laugh with you. Even though they’re upset, they have a tendency to be that humour seems to get... bring you all closer together. You know you’re not all individual, you’re not sitting on one end of the room, like a lot of people do with weddings where the one family sits the one side and don’t talk to them, another family sits the other. And nobody...there’s... it makes...makes the whole situation a disaster. And you just enjoy yourself, get on with life.
 

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

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.

For Colin there was no soreness, although there was some discomfort immediately after the operation when his bed clothes rubbed against the wound.

But the actual... there was no soreness there, there was no, I used to pass water out comfortable with no problems. So really I had no discomfort or anything. The only discomfort I did have was that it was like... if I had like… the bed clothes was laying heavy obviously it had... oh don’t forget that this is only a month prior to me having to the operation, so it would still be tender there. Which I never took no notice off I thought well that was it. But… looking at it in hindsight now is obviously it was getting infected again. Where they’d actually took the actual gland away, the end of the penis away and reconstructed, it was actually coming back again. You know so…

It has only been 3-4 weeks since his last operation so Colin has to sit down to use the toilet, but feels fortunate as he doesn't have to go every five minutes.

But at the moment I mean it’s been 3,4 weeks since I had the last operation so obviously I go to the toilet and I have to sit down..on the toilet. Which is not a big concern because I mean well I think I’m fortunate or lucky enough that at least my movements to urinate is great. There’s no problems there. You know, there’s no problems at all. I don’t need to go every 5 minutes. So I’m okay as regarding that. At the moment. So…yeah… great, I’ve got no..I’ve got no qualms about it, no problems with it at all. No. All I want to do it live and get on with my life.

Colin would like to be able to compare other men's feelings and experiences with his own.

 

Is there anything that you’re like to know about other men’s experiences of penile cancer?

 

Patsy' Yes.

 

Colin' Yeah really yeah. Because it is a… It is a knowledge that to see how they react or they feel about it, you know. Or if they’ve had the op… Same operation as me. If it’s been severe or if they have been even more severe where they’ve had everything took away. You know what I mean? Testicles and everything. You know.

 

Patsy' Have they? Oh you can’t answer that. But there again it would lovely to know. If I was to go onto your internet and find that out that would be great. Absolutely wonderful.

 

Do you think you would have found that resource helpful when you were diagnosed?

 

Patsy' Definite. Wouldn’t we?

 

Colin' Yeah or the proportion of length of life to live. You know that that’s basically the thing really, you know.

 

Patsy' If they got on with the procedure what after effects did they have and... It would have been marvellous.

 

Colin's wife felt there should be a standard care pathway for penile cancer similar to that for breast cancer.

Patsy' It would be nice to know that the consultant or the surgeon would have a proper procedure for this. You know did determine what degree of cancer it is, how they will proceed and what further protection they’ll take. Like with me with the breast cancer there was a procedure. Lumpectomy, glands under that... under the arm to test, and the tablets after. Which was a procedure they took with most people, unless it was a full mastectomy, didn’t they? But you did have a choice anyway. And this is what… there should be a procedure for this kind of matter as well. Once they get to know all the ins and outs. You know I know it’s probably a new… a rarity at the moment. But once they get it all together make it a procedure, like they do with breast cancer. They know exactly what they’re going to do… with the.. you know take the lymph nodes out anyway just in case.