Steve - Interview 15

Age at interview: 71

Age at diagnosis: 65

Brief Outline: Steve found an abrasion on his penis. After seeing his GP he was falsely diagnosed with Herpes. His condition did not respond to treatment and he was referred to a dermatologist who diagnosed cancer in 2005. Steve underwent a partial penectomy, reconstructive surgery and removal of lymph nodes.

Background: Steve is a white male with grown up children. Steve is a retired paver.

More about me...

When Steve found an abrasion on his penis he thought it would clear up without intervention. He presumed it was an occupational injury acquired through his working with stone. After about four months of self-medicating with Savlon the condition showed no improvement so he visited his GP who, without an examination, diagnosed Herpes and he was sent home without treatment. A return visit to another GP resulted in another diagnosis of Herpes, this time with treatment. After three weeks, with the condition still failing to respond to treatment and after much pressure and persuasion on his part Steve was referred to the GU Med clinic at his local hospital. Here he received a diagnosed of lichen sclerosis and was treated for seven months. At this time Steve started to get tightening of his foreskin which necessitated a circumcision. He feels that at this stage he received little or no support from those treating him. After his condition remained non-responsive he was referred to a dermatologist, and he remained under his care for eighteen months. Eventually the dermatologists decided Steve needed further investigations and performed a biopsy on the affected tissue. The results of the biopsy revealed that Steve had cancer and he was immediately referred to a urologist at the Specialist Penile Cancer Centre. He had first noticed his symptoms in 2002 and it was now 2005 and the cancer was too large to be treated with anything other than surgery.

Three weeks after seeing the urologist Steve underwent a partial penectomy and reconstructive surgery, having rather more of his penis removed than he had expected. About two months later he had further surgery to remove some lymph nodes.

Throughout this time Steve was supported by his partner (now his wife) but didn’t tell his children the full story – he wanted to spare them the anxiety. After the surgery he told a few friends, finding it easier to be open rather than trying to hide things. He has praise for both the Specialist Penile Cancer Centre and the Macmillan nurses but is angry with his GPs for ignoring the potential seriousness of his condition and putting it down to his sexual behaviour.

Still running 10k at sixty two Steve continues to train regularly at the gym. He has had to learn to adapt his urinary and sexual practices but finds this unproblematic. He leads a full and active life with his new wife and considers it his duty to be there for others – particularly his family, friends and his elderly neighbours. He finds that he can help other cancer sufferers by talking about his experiences.

Following his surgery Steve had check-ups every three months, then every four months, then every six months. Normally, if all is well, there would be no more hospital visits after three years but unfortunately the lichen sclerosus returned and as Steve would be unable to tell the difference between that and cancer he still has to be seen every six months. However, he feels quite categorically that regarding the cancer, he’s beaten it.

 
 

As there was a return of a skin condition on his penis called lichen sclerosis, Steve is continuing with check-ups indefinitely.

Yes I was going back there every three months for about a year. And then it went to four months, and then it went on to six months. And that’s when they decided the lichen sclerosis was definitely back and that’s when they said to me ‘we’re going to have to keep you here at six months for an indefinite period’. Because normally they would have released me after three years. But they said that the... I wouldn’t know the difference between the cancer and the lichen sclerosis. And I think he does little tests on his… trainee doctors in there because every now and then they come in and panic and he comes back and says ‘no it’s lichen sclerosis’ [chuckles]. So I think it’s a nice little test for them all but…yeah it’s been a long time. I could do without the journey and the cost of the journey- obviously it come quite a bit of money to get out there each time. But no it’s... they’re doing their best for me and I’m happy with that.

Steve found it difficult at first to control the flow of his urine but trained himself how to do it using two hands and is now quite accurate.

They said to…you’ll have to sit down for the rest of your life. But I found that more messy than standing up. You just have to learn how to go to the toilet again. You have to learn the... you’re going to have… you spray more than... pee in a direct line any more. So you just find ways round it. It is quite difficult but after a few months I’m quite happy now. I’m quite accurate too [laughs].

So you had to train yourself in a way?

Yep, yeah.

So as I say, going to the toilet I’ve learnt how to do, I’ve learnt that I, it sounds bragging now, but I held it with two hands and I hold my hands so I can stop the any spray that does decide to go all over the show it don’t go on my trousers [chuckles]. But I’ve got it under control pretty well now so… it’s…. it takes a little bit of practice. It might not... just think of it when you was a baby and it was going all over the show and now it... it takes a little while to get the hang of it. You’re peeing from a different direction all of a sudden.
 

Steve's rash grew smaller then bigger while it was treated by his GP as skin discolouration on the genitals called lichen sclerosus or BXO.

It would go smaller then go bigger again. You see you’d think you’d got it under control and it would grow back out again. So it’s... it was very weird. But that’s when I thought it was lichen sclerosus. I just thought we was curing it and then it would come back and they’d see. It was when it... it just got bigger, that’s when they decided it couldn’t be lichen sclerosus.

A GP treated the sore on Steve's penis as herpes. When this didn't work he was referred to a sex clinic and diagnosed with a skin condition. After 18 months he had a biopsy, which showed cancer.

I found a sore on the penis….thought it would just clear up, just thought I’d…working with stone I just thought It’d be an abrasion or some sort of thing and left it for several months, then when it didn’t clear up I went to the GP. He immediately, without examining me, decided it was herpes, which wasn’t received very well but …..was sent home with a flea in my ear basically and went back 3, 4 months after to see another GP because it still hadn’t cleared up, who then decided to treat me for herpes. Then decided it wasn’t after 3 weeks after that he decided it wasn’t herpes and then sent me to the sex clinic in [Hospital] and….. the doctor there turned round and said that it was a Lichen Sclerosus. And they tried to treat it for several months. In failing to make any progress he then sent me to the skin clinic…which I was attended for about 18 months before I met the top man who decided that it was he wasn’t happy with it. And he had a biopsy done on it and it turned out to be cancer. The story started form 19... sorry 2002. By the time they’d decided it was cancer it was 2005. So it’s a long period of time and... the treatment from then on I was delighted with.

Steve had a pinch taken out of his penis without anaesthetic; he found it quite painful, but was able to laugh about it too.

Well he took… a pinch out the end of my penis where the sore was and it was quite painful. And me being me, I’ve... I thought it was funny at the same time. So … the nurses and the doctor thought it was funny that I could sit there laugh about it [chuckles]. It did become… I thought it was comical. That I‘m sitting there, they’re taking a nip out the end of my dick [chuckles] to do a test on. They were good people, they done the job, sorted it out.

Did you have any anaesthetic at that point?

No, no ‘cause, because I had to have it done… he wanted it done straight away. There was no chance for any anaesthetic or anything like that. They just said they was going to do it…so they could results quick.
 

Steve tells other men to make sure you get to see the right person if you have something wrong.

Do you have a message for anybody that has been recently diagnosed with penile cancer?

Not so much for them who have been diagnosed because they’ve already got through it, for them who are suffering from any sort of problem like that, go out there and don’t take no from anybody. If you know what you... you’re right, you’ve done nothing wrong, you’ve got a problem, make sure you get to the right person. And don’t let anybody fob you off about second class or you can wait and it doesn’t... just get out there and make sure you get to see the right person.
 

Steve was supposed to go back to see the doctor in three weeks but was called after only a week,...

Can you remember the actual words used by the specialist, when he disclosed that you had penile cancer?

Yes he called me back in there. I knew there was something wrong when he called me back in after a week, it’s supposed to have been three weeks. And I went in there and he sat us sit down and he said, ‘Well I’m sorry,’ he said ‘it’s cancer. I can’t go any further with it. I’m going to send you to the hospital in [city]’ he said ‘they’re the specialists in this and they will take care of you’. And that was it.

How did you feel when you heard penile cancer?

It’s not a thing you want and because there are by this time I’d met [my partner] so it wasn’t the ideal situation. But… it’s just a word, cancer. It’s beatable and all things in life are beatable so it’s… upsetting it makes you feel nervous about what the future is but just keep a positive attitude to it and you can work through it.
 

Steve felt happy to tell people all about his cancer after his treatment; it was easier than trying to hide it; but he still keeps it from his children because he doesn't want them to suffer.

At that point did anybody else know?

No. No it’s... it was.. I kept it up away from the kids because I didn’t want the kids have to suffer with any of that, any of the anxiety. I’ve been told off since but the... no they were fine, they were quite happy with it. They know their dad tells them when he… when they need to know and no more.

So did the… did they ask you any probing questions?

No I think my oldest son turned round and said, ‘Well you’ll have to tell us more about it’ and he’s never asked again. He’s… he wanted to know in case it happened to him but he’s never asked again so I’ve never bothered to volunteer the information.

Did you tell anybody else, outside the family?

Not until after the operation, until I’d got it all under control. And that’s when I felt free that I could talk to people about it. And obviously being a bloke when you’re going to a public loo you have a problem after the operation. So anybody says anything you tell them straight what it is and... anybody wants to take the mick, they shut up straight away. Because as soon as you mention the words ‘I’ve had a cancer operation’ they stop dead. So don’t be frightened of what anybody else thinks anyways, just get on with it.

So you’re quite open with people?

Yes I found it easier. All the time you’re trying to hide something it doesn’t work…it, you feel apprehensive, trying to hide something. If you bring it straight out into the open it’s fine. All of my friends now know exactly what the operation involved, what had... what has happened. Male and female. They all know exactly what it’s all about and they’re all there for me.
 

While young men were curious, Steve found that older men were uneasy when he told them about his illness although they became more comfortable with time.

What were the general reaction when you told them what you had?

Disbelief I think off most of them. Especially the blokes who are then going they’re all a little bit ‘oh what the heck’s this? What’s going on here?’ And they’re...they’re all got a little bit un...uneasy about themselves. But I think most of them are...are quite comfortable now they...they know what it’s all about and how easy it is to overcome. And most of them are old boys now, they’re all in the ‘70s so obviously things are not working like they used to be for them as well as me.

Were you asked any awkward questions?

Not that… I can’t remember anybody ever asking me anything that I couldn’t answer.

And did you find people were very curious about it?

I found younger people curious. Anybody who… who probed when they were in their ‘20s. I think they wanted to know a lot more about than anybody else. So I just… I would just tell them what they asked and that’s the end of it. Never give them any more detail, just tell them what they asked. 
 

Steve felt soreness rather than pain after having lymph nodes removed; neither was it painful having the staples removed when his wounds had healed.

So can you just describe the operation on your lymph nodes? How was that compared to the original one?

I came back with …I had a skin graft on the... on the penis obviously, they have to rebuild as much as they can. So you... you couldn’t move for... five days I think it was. That was unpleasant. But the lymph nodes I had got seven staples each side of my stomach and they allowed me to come out the following day. And I’d gone by Tube and it wasn’t very pleasant going through the Tube at the rush hour with a bag in front of me [laughs]… guarding myself as much as I could. But no that was easy com...in comparison.

Was it painful?

No... not... it was sore but not desperately painful.

And has that operation impacted in your life in anyway?

None at all. None at all. I went to the local nurse in the health centre, took the staples out and I think that was the last time I even thought about it until today. It was all that easy. I didn’t find the staples everybody said, ‘Oh they’re painful when they come out’. No I didn’t find any problems at all.
 

Steve wasn't looking forward to the rest of his life on his own' he would have been devastated if his new partner had knocked him back when he told her about his cancer.

I was not looking forward to living the rest of my life on my own totally…I’d been married, a very successful, happy marriage, for 43 years.  I was a widow for 3 and a half years when me and [Name] got together as friends. And when we realised, or I realised, it was... was going to go on further than that I had to explain it all to [friend]. And I think if she’d have knocked me back then, that might have been a little bit difficult. But she didn’t and it made life easier. See she was quite happy realising that we was good together.

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

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.

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

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…