Les - Interview 76

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.

More about me...

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.

 

After surgery for penile cancer Les found the end of his penis was closing up, causing spraying; he had surgery to widen the opening and uses a dilator regularly so is now able to urinate effectively.

I still have to go back for check-ups, and it’s like the end of my penis now is, well one of my mates was telling me is it like a welders glove. 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 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 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 at this present day.

Les had radiotherapy for penile cancer and 14 years on still needs to use moisturiser daily on the affected skin; he developed a rash after 11 years, which may also have been due to the radiotherapy.

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 check-ups and stuff 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, it’s all fine and dandy. But I wasn’t sort of given any sort of advice on the after-care 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 where are we up to now, 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 sometimes the skin on it really dries out and gets very flaky. 

 

But then I’d not really been having any problems for quite a while and it was probably eleven, twelve years after all the treatment I’d noticed these red dots, really bright cherry red dots that were coming up. I know I had been told by the cancer place, ‘Any problems us a ring’, which they were fine, you know, no problems at all. 

 

I rang them up, said I’ve got this problem. ‘Come and see us’, and they saw it, and well, I don’t think they knew what it was, and said they were just going to do a biopsy and see what these things were, and cut a little piece out. But the frightening bit about that visit was the surgeon that I saw was quite adamant that if it was cancer this time, he said ‘you won’t get the, we don’t do radiotherapy treatment like you had last time, it’ll be radical surgery, reconstruction’, and you just hear all this, they’re going to cut it off! And that was really worrying. That’s it, you go away, you wait for your appointment to go in and do the biopsy and then it’s a matter of the, fortunately the results of the biopsy, whether it was just radiation damage, years later that’s still happening, it’s still changing. And as I say, I’m still seeing him now.