Steve - Interview 77

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.

 

After having cancer removed from his penis Steve had a reconstruction; he was told he would have...

So were you given information about how the surgery would impact on you using the toilet?

 

Yes we went through that... 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. 

 

So you had to train yourself in a way?

 

Yep, yeah. 

 

Did the staff at the hospital give you any assistance with that?

 

No they just said, “You’re going to have to learn, mate”. They were good. They just said, “You’re going to have to go away and learn, your catheters out, sit down. You’re going to make a mess, so just tidy up behind yourself each time”. 

 

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 any spray that does decide to go all over the show, it don’t go on my trousers. But I’ve got it under control pretty well now so… It takes a little bit of practice. It might not… Just think of it when you were a baby and it was going all over the show, and now it takes a little while to get the hang of it. You’re peeing from a different direction all of a sudden. 

Steve developed a sore on his penis which was diagnosed as lichen sclerosus but was later found...

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 [Name of place] 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 attended for about 18 months before I met the top man, who decided 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.

 

So were you given any information about that, about kind of understanding how the cancer develops?

 

No I don’t think I… the only thing is that one doctor did say it can lead… And that was the sex clinic doctor, he did say lichen sclerosus can lead to cancer. And it’s the only one that ever mentioned it until I was diagnosed with the cancer.

 

And were you then given any aftercare?

 

Yes I was going back there every 3 months for about a year. And then it went to 4 months, and then it went on to 6 months. And that’s when they decided the lichen sclerosus was definitely back and that’s when they said to me, ‘We’re going to have to keep you here at 6 months for an indefinite period’ - because normally they would have released me after 3 years - but they said that I wouldn’t know the difference between the cancer and the lichen sclerosus. 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 sclerosus’. 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 comes quite a bit of money to get out there each time. But no, they’re doing their best for me and I’m happy with that.