Les - Interview 07

Age at interview: 55

Age at diagnosis: 41

Brief Outline: Les noticed a lump on his penis, it was itchy and sore. He went to his GP who told him the lump was a genital wart. His GP treated the lump as a wart to no avail. Later a biopsy revealed the lump was cancerous. Les had surgery to remove the affected area.

Background: Les is a white married father of two grown up children. He is a full time chemical process technician at a large chemical manufacturer.

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It was 1996, and Les noticed a lump on the side of his penis. Initially Les did nothing about it and thought it would just go away. The lump began to get very itchy and sore, and after receiving encouragement from his wife, a cancer nurse, he felt he must seek help. 

 

Les went to his GP who gave him a diagnosis of a genital wart. Les had been married for twenty years at this point and had a strong relationship with his wife. Whilst he acknowledged that for some men this news may have caused tensions in the relationship, Les had confidence in the strength of his marriage and therefore was not overly concerned at the implications of this diagnosis. Les’s wife was swab tested to see if she had the wart virus, this test came back negative. Despite this Les’s GP recommended that the lump be treated as a wart and over a period of six to eight weeks Les attended his doctors every week to have the lump sprayed with nitrogen spay. The spray made the lump more sore. After weeks of treatment with no improvement, Les’s GP said ‘it will drop off in time, just leave it’. 

 

A year later, the lump was still there and was getting a little bigger as well as more sore. Les went back to his GP who referred him onto a specialist surgeon. The surgeon told Les that he would remove the lump and take a biopsy. A week or so later the biopsy results came back and Les was told that the lump was cancerous. Les knew nothing about penile cancer and before he received this diagnosis, he didn’t know you could even get cancer in the penis. Les’s immediate thoughts were that he was going to die. 

 

Les was then referred onto a cancer specialist at a local hospital. When the consultant said the name of the hospital, Les became more anxious as it was the hospital in which his father was treated for lung cancer, prior to his death and therefore was a place which conjured up bad memories for Les. At the hospital Les was told that he would have to have the top of his penis taken off, the surgeons said that if he had presented to them earlier they would have been able to perform a less invasive operation. 

 

Over the period between diagnosis and treatment Les was extremely worried about how his illness would impact on his family, if he didn’t survive, how would they cope? He was also worried that if he was to survive his penis would never work again. 

 

After the initial surgery Les was told that he would then undergo a course of radiotherapy. He was not told any details about how the treatment would affect him and felt a bit like a rabbit in the headlights. Leading up to the radiotherapy Les had a mould made of his penis, Les found this process a little embarrassing. Over the course of the radiotherapy treatment Les had to attend the clinic everyday over a period of 16 days. The radiotherapy treatment was similar to having an x-ray and whilst Les found it quite embarrassing at times, there was little discomfort involved in the procedure. Over the period when he was receiving the treatment Les experienced a good level of support from his employers. He was given paid sick leave, giving him the freedom to attend treatments and consultation sessions without causing financial problems. He also found that friends and family he told were quite understanding about his condition.

 

After the radiotherapy had finished the skin began to fall off his penis and it was very sore, over a period of about two months. After the treatment Les was slightly surprised to be left alone to monitor himself. He received no aftercare over this period other than being told to use soaps for sensitive skin on his penis to avoid irritation. At his first check up after the radiotherapy the consultant checked how the treatment had gone and looked for any signs that the cancer had spread. Les continued to have checkups initially every month, then every two months and at progressively longer intervals over a course of five years. 

 

Les had been successfully managing his condition for around 12 years when he noticed some bright red dots on his penis. He rang the hospital who told him to come in for a check-up. The consultants recommended that they take a biopsy to find out what the red spots were. The consultant told Les that if the tests came back positive and the cancer had returned it would mean that he would have to undergo further surgery to his penis, this deeply concerned Les. Les was relieved to hear that the results came back negative. 

 

Over the years since he was treated, Les has had a number of problems relating to the treatments he has received. Les found that he had to apply moisturiser to his penis because of the damage caused by the radiotherapy. He found that it would get very dry and flaky if he forgot to apply moisturiser on a regular basis. After the initial surgery several lumps appeared up the side of his penis, these lumps were found not to be cancerous when they were removed, however the scars became infected causing discomfort. Les also had a problem with the end of his penis closing up, making it difficult for him to urinate. He was given a device to put down the end of his penis to hold open the end of the penis and is now able to urinate effectively. 

 

Despite the complications, Les is currently in good health and very positive about his future. Whilst his penis shows effects of the surgery it is completely functional and he is able to fully enjoy life. 

 

 

Les says he was embarrassed about showing a lump on his penis to others, but the biggest delay was caused by the GP misdiagnosing it as a genital wart.

Oh, well, I suppose in a way really it was a matter of with me being embarrassed about showing it and things like that, but I just basically went to the GP and the big delay was the fact that the they thought it was a wart and there was a year passed then before I actually went back again and had the surgeon who said it was cancer. Which I suppose could have been quite vital but luckily I got away with it [laughs].

After noticing a lump on his penis, Les went to his GP who told him it was a genital wart. Attempts to freeze the wart off failed, so a year later he had it surgically removed.

Right, well it’s about fourteen years ago, something like 1996, 1997. I noticed a lump on my penis, and I’d had it for a while, and it just became very, very itchy and sore. and I went to my GP and basically he just said it’s a genital wart so he sent me to the... it’s just known as the VD Clinic and I went there and when they examined me I went with my wife and they said because it’s a genital wart she was tested and swabbed as well which raised a few concerns at the time as to who’d been doing what with who and where and when at the time. But, there was no great issues because our marriage, well we’d been married twenty years plus then and we certainly knew each other really well then and we’re still happily married now but I’m sure something like that posed with someone in a relationship that was a bit shaky it could, I’m certain it would upset it in some way. And it was a concern at the time but then they just basically started treating this thing as a wart. I was going there for something like six or eight weeks. Each week they go and spray it with this nitrogen spray designed to freeze the wart off err and it just made it sore, really, really sore. And in the end they just said, ‘Oh, it will drop off in time, just leave it, it’ll be ok, there’s nothing to worry about.’ And it was a year late, a good, it was a good year later it and was still there this thing and it basically started getting a little bit bigger and it was getting sore. And I went back to the same clinic and told them basically, ‘You said that this would fall away with no problem.’ And from then I was referred to a surgeon and he just basically said to me he’d lop it off, [nods head] which they did.

Les thought he would die after he was given his diagnosis. He had watched his father die of lung cancer a long time ago when treatment was not as good as it is today.

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...
 

Les couldn't think of questions and felt like he was blindly going along with things and hoped for the best.

So did you largely go into the treatment blind not knowing how it would affect you?

Yeh a bit like a rabbit in the headlights really because you’re so stunned with it all and you just don’t know, what it is, what’s going to happen and you can’t even think of any questions because you don’t really know what you’re talking about [laughs]. You just sort of blindly go along with it and hope for the best.
 

Les was going to have daily appointments for radiotherapy and his boss said that he should take time off rather than trying to continue working.

Yeh, I told yeh work, every, work had to know about it because of these treatments. I was going to be sort of going away from work every day for these treatments. And they were really good because they’d just say well, just ‘don’t bother coming in. Just you go and get your treatments done and.’ So they were quite understanding about it. The said don’t start, because it was only like going for, you know there for sort of twenty minutes while you get the shot done. But they said basically ‘don’t bother coming in, you’ve got enough on your plate.’ So they were quite understanding work, friends, family. So, sort of everybody knew about it, I thought well there’s no use hiding it, it’s out there, and I was quite surprised that, that there was this thing called penile cancer and, at the time I think I just wanted to jump on this crusade of en..., you know, enlightening people that, you know this thing exists, watch it! [laughs] yeh.

Les broke the diagnosis to his wife in the way that he was told it: it was not too difficult to keep his diagnosis from his children because he had appointments when they were at school.

How did you break it to your wife?

I basically just came home and told her and said, ‘He said it’s cancer.’ I suppose I broke it to her the way I was, I had the news broke to me [laughs]. It was quite upsetting and worrying at the time. But it was probably more worrying actually the second time when it came back, well it didn’t come back, when they, I went in for the second surgeries for the these biopsies. I think if you think it’s come back – you hear a lot of these stories about people that have leukaemia, they have all these treatments and they go into remission and they can live for 20 years and then it comes back again and that’s it they’ve got a fortnight and away they go. So I think it was more worrying when we thought it was coming back, and also being older it’s like you know [chuckles] that it’s the end of the line. But, touch wood [touches head]– still here! [laughs].

I think at the time because it’s like, the kids were only young at the time and it was the sort of constant worry of, you know will I survive it? How will life sort of carry on for my wife once I’ve gone? You, you think all the black stuff and those were the sort of the mental worries if you like. And they were quite strong at the start you know when you’re going through all the treatments, and the kids didn’t know anything about it either because I was going to see these doctors in the daytime when they were at school, all the treatments was set up in during the middle of the day so we could take the kids to school in the morning I’d have the treatments and we’d be there at the school gate in the afternoon to pick them up so. It was sort of shielding the kids from it and worrying about them and their future sort of thing.
 

14 years after radiotherapy, Les still has to moisturise his penis to stop the skin getting dry.

And then once that had finished it was then the following two months that were probably the worse because the radiation damage was quite horrendous, because all the skin falls off, it’s very sore and you don’t see anybody[laughs], it’s like ‘you’re done now’ and they’re sort of say ‘we’ll see you in a month or two.’ and it’s only when you go back in and they’re only sort of checking for lumps and bumps to see if it’s spread anywhere. And I went on then for like five years, just keep going back, it’s like every month then every two months, then every three months, every six months, every year and then they said, ‘Right, well you should be ok now five years have passed – no problem.’. And I was told at the time when I had the radiotherapy that I had to look after the skin because it would be damaged with radiation which is fair enough and I had to use like baby soaps and things like that so it didn’t irritate it. And I thought it was just at that time because during the five years of the treatment, well not the treatment but five years of going back for the checkups and stuff err it had basically healed up. It still looks a bit of a mess now, it’s as if it’s been trapped in a car door but it works [laughs], it’s all fine and dandy. But I wasn’t sort of given any sort of advice on the aftercare after, whereas like now I have to put moisturiser on sort of every day because the radiation damage is still there, it’s still progressing, it’s still happening and this is like fourteen years on, which I wasn’t told anything about at the time.  And that’s, were are we up to now, I’d, I’d just been discharged from the hospital and I basically stopped, you know looking after it if you like, I just got on with my life and I was applying some creams now and again when I could remember or whatever. Or if it did get particularly dry because err sometimes the skin on it really dries out and gets very flaky.

Les's employers were understanding when he told them about his daily radiotherapy treatments' they told him to take time off and gave him sick pay.

I told yeh work, every, work had to know about it because of these treatments. I was going to be sort of going away from work every day for these treatments. And they were really good because they’d just say well, just ‘don’t bother coming in. Just you go and get your treatments done and.’ So they were quite understanding about it. The said don’t start, because it was only like going for, you know there for sort of twenty minutes while you get the shot done. But they said basically ‘don’t bother coming in, you’ve got enough on your plate.’ So they were quite understanding work, friends, family. So, sort of everybody knew about it, I thought well there’s no use hiding it, it’s out there, and I was quite surprised that, that there was this thing called penile cancer and, at the time I think I just wanted to jump on this crusade of en..., you know, enlightening people that, you know this thing exists, watch it! [laughs] yeh.

Well I’m quite fortunate that you know I got paid on the sick and stuff like that so from that side of it I was ok. But it was a matter of how long I was going to be off, they’d pay me full pay for so long, but as I say fortunately I was ok. And also with a diagnosis like cancers and like heart attacks, major stuff, things like that I’ve seen at work, where they pay them indefinitely, they’re pretty good.
 

Les talks about a procedure to stretch the opening of the urethra at the end of his penis in order to reduce spraying.

I still have to go back for checkups and it’s like the end of my penis now is, [chuckles] well one of my mates was telling me is it like a welders glove [laughs]. It’s sort of quite hard and I have to moisturise it and the end of the penis is closing up, and I was in hospital, it was just after Christmas, so that would be January 2011 where they did the, what they call the is it ‘meatus dilation’? and they put this contraption in and blow the end open a bit and, now that is really, really sore [laughs] and I must admit I actually spoke to the nurse at the hospital last time, if I’d have known it was going to be that bad at that time I wouldn’t have had it done. But, the results of it have been pretty good because the reason I went was the, this hole was closing up and every time I went to the toilet it was just spraying everywhere, it was just like a fire sprinkler and I had to sit down to go the toilet all the time. And after going through this procedure, you know I’ve now got a proper stream when I go to the loo. And I have to sort of moisturise it still and they’ve told me to put a catheter in twice a week just to keep the opening, open and that’s where we’re up to [laughs] at this present day [laughs].

Les feels that the health professionals should be better educated in revealing diagnoses.

All I would say is on the breaking the news, don’t treat it so matter of fact. It’s sort of, it is a massive deal for a bloke to sort of hear they’ve got something like this, for anybody, with any cancers, but it just seemed to be a bit severely dealt with, it wasn’t sort of, because from where my diagnosis came from it was basically from a VD Clinic if you like and then I had a bit of surgery and then you’re told ‘look it wasn’t a wart, it’s cancer’ and this guy was saying ‘it’s. it’s a rare cancer, you should be alright, there shouldn’t be any problems’ but it would be nice to have some, somebody that you could talk to that knew something more about it because this guy said at the time like, you know ‘I’ve never seen one before and I’ve been doing this job for years’ so he has got no experience in this field so, perhaps a little bit more education for these urologists and stuff that are out there passing on the bad news.