Peter - Interview 19

Age at interview: 75

Age at diagnosis: 72

Brief Outline: Peter visited his GP suffering with genital irritation. He was referred to a Specialist Penile Cancer Centre where he had a biopsy and was then diagnosed with cancer. The cancer was surgically removed. Peter had a further operation to remove lymph nodes in his groin.

Background: Peter is a white married male, originally from Scotland. Although now retired, he used to work as a coal face worker for a large mining company. Peter has one grown up child.

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Peter first visited his GP with an intense itching on his penis. After treatment with creams failed, the itching became intense and small white spots appeared on his penis he was referred to his local hospital. The consultant there again treated the condition topically but it failed to respond. A biopsy was taken from Peter’s penis which showed he had cancer. His wife was extremely upset when she heard this news and Peter was initially very frightened. However after the consultant told him it was one of the more easily curable cancers his fears were substantially eased.

Peter was referred to the Regional Centre for treatment where he had the cancer removed. He opted to have an epidural and was interested to watch the reflection of his operation being performed in the reflector of the big theatre lamp. He was in hospital for two or three days and then had to return to have a skin graft to reconstruct his penis.

Peter returned to the Centre for regular scans. These were clear until eighteen months had passed when he was shocked to hear that the cancer had returned. It had spread to the lymph nodes in his groin which meant they had to be surgically removed. The post-operative period for this second operation proved to a little more traumatic than the first. Peter’s wounds leaked quite badly and had to be changed very frequently. Sometimes the nursing staff were a little lax in performing this task which left Peter in some discomfort. He left hospital after three weeks but his home care was inadequate and his wounds became swollen and infected. He was readmitted to hospital where the wound in his right leg was debrided (the cutting away of dead or contaminated tissue from a wound to prevent infection). He stayed in hospital for about six weeks as the wound was failing to heal. Now at home Peter is still troubled by infections and swelling in his right groin.

Before his diagnosis Peter knew nothing about penile cancer and found that some of the professionals caring for him had only a patchy knowledge. He told his family about his condition but when talking to other people he referred to it as having problems ‘down under’ as he was apprehensive about their perceptions of the illness. One of the most helpful experiences was when a fellow patient in hospital spoke rather loudly and inappropriately about Peter’s condition, but by doing so inadvertently cut the ice and caused several patients (including Peter) to open up and share their experiences and their worries.

The surgery has had some effect on Peter’s life but he feels it has not had a major impact. He has had to make some adaptions to his toileting practices and sexual activity. Whilst he was unable to drive for the first 6 months after the surgery owing to the swelling in his groin he is now able to once again. Peter still feels slight pains in his groin and legs, but continues to live his life normally to the best of his ability. He sees a consultant about the problems affecting his groin and continues to have scans every six months, but is due to have this changed to twelve monthly.

 
 

Peter had a small itch on his penis that gradually worsened.

Well as I say like I started with a small itch in the penis and each night it got gradually worse so I thought I’d better go and see a doctor about it and they treated it with Canesten cream. But after a period of a matter of a few weeks it didn’t subside any, and in fact it got really worse and eventually it was little white spots that was on the end of the penis so the doctor then told me I would have to go and see a specialist.

Peter was followed up for 18 months after treatment, when a scan showed a recurrence in the lymph nodes in his groin; he had further surgery to remove the affected nodes.

After the initial procedure … life got back to more or less what it normally is. Keep going for the scans and every scan you got and it was clear, it was like ‘oh, I’ve scored a goal, I’m past that part there.’

And eventually I got to 18 months and my consultant said, “You’re doing very good” he says, “Usually if we don’t get any more reoccurrences at the eighteen month period.” So the next scan after that imagine my surprise when he turned round and said, “It’s come back.” Well I was shattered. And I turned round and I telled the wife and I says, “I don’t know what’s going to happen this time.” I says, “It’s come back and I don’t know where it’s come back.” And while the doc… the consultant did say it was at the lymph nodes in my groin and he told me the left hand side was full of cancer, but the right hand side was clear. But he would do a procedure where he removed the lymph nodes on either side because eventually it would travel to the other side.
 

Peter had a sample of his penis taken by a urologist: at his appointment following this, he learned that he had cancer and was referred to a urologist specialising in penile cancer.

This carried on for a matter of six, six weeks and I finished up he says he would take a sample of the skin of the penis like and he’d let me know what it was. Well when I was told to go back and see him, the day, he says “before I tell you” he says “I want you to understand that, something” he says “that it’s not life threatening.” I says “well before you tell me, you saying that, I think you’re going to tell me I’ve got cancer.” And he said “yes” he says “but if I had to choose which cancer I wanted it would be something like this.” So I know I went white because I could feel the colour draining from my face as soon as that word was mentioned like and I said to myself “right, there’s only one thing to do now and that’s get on with it and see what happens.” So he recommended me to a consultant.

Peter had more or less diagnosed himself and therefore he wasn't shocked when told he had penile cancer. His consultant put his mind at ease after he explained how treatable it was.

So what were your immediate thoughts when you were first given that diagnosis?

Can’t say I was shell shocked because I more or less self-diagnosed myself sort of thing like in my mind before it and I thought ‘if the worst comes to the worst it will be like… you know’ I was thinking all sorts of treatment like radiotherapy and all this lot and that and when he put my mind at ease like, it was one of the lesser cancers, well just like… lifted all things lifted off me, the concern and that – even though I was still concerned a bit about it, how it would turn out and what future come backs there were with it like and. As I say like I was really happy to hear what he said about the initial diagnosis like about when he turned round and said if he had to pick a cancer this would be one of them, that he wouldn’t be bothered, much bothered about.
 

Peter went back to the hospital for a second operation to have a skin graft from his thigh put onto his penis.

I had the operation and I was in a lot of pain after the operation because they actually did quite a severe – you know – procedure like and it took – looking back it didn’t seem to take as long but the pain kept with me for quite a bit like. And then on top of that I had to go back and they did a skin graft. Took it from my thigh and put it on to the penis to make it look a bit normal, and after the initial procedure … life got back to more or less what it normally is. Keep going for the scans and every scan you got and it was clear, it was like ‘oh, I’ve scored a goal, I’m past that part there.’

Peter had been going for regular check-ups for 18 months when a scan showed that his cancer had returned.

Keep going for the scans and every scan you got and it was clear, it was like ‘oh, I’ve scored a goal, I’m past that part there.’

And eventually I got to18 months and my consultant said, “You’re doing very good” he says “usually if we don’t get any more reoccurrences at the 18 month period.” So the next scan after that imagine my surprise when he turned round and said, “It’s come back.” Well I was shattered. And I turned round and I telled the wife and I says “I don’t know what’s going to happen this time” I says “it’s come back and I don’t know where it’s come back.”
 

After having lymph nodes removed from his groin Peter's wound took a long time to heal. At home the swelling in his groin grew larger and he had to have it drained again, which reopened the wound.

The consultant did say it was at the lymph nodes in my groin and he told me the left hand side was full of cancer, but the right hand side was clear. But he would do a procedure where he removed the lymph nodes on either side because eventually it would travel to the other side. Well that was the worst time I’ve ever had in hospital that, after that procedure. It just would not heal and I was in hospital quite a long time, more normally than what other people were in and it finished up that the consultant had to do another procedure. Because it wasn’t healing he had to what you call debride where he was.... had done it, because all it kept doing was leaking and leaking and leaking and it was very upsetting.

I was told I would be visited by the nurses, home help, nurses and things like that and they would look after me but they didn’t and the swelling in the groin grew bigger and bigger. Back to the hospital to see the consultant on an appointment and when he seen me he was really surprised and upset at the state of my groin. He said, “Whoever’s let it get into this state” he said “it’s terrible” and he proceeded then to drain my groin and he took litres of the lymph out of it and that caused the wound to reopen in the groin and that’s when I had another four or five weeks in hospital just waiting for it to cure again, but since then I’ve come out really well and the only thing I’m left with is like – I know you can’t see it on camera but one leg that won’t go back to its normality like this leg did and my groin is permanently swollen like a football and it’s very uncomfortable at nights and up to now we haven’t found a way round this problem and until we do like I’ve just got to carry on doing what it is they’ve told me to do and that’s about it really.