Jim - Interview 25

Age at interview: 60

Age at diagnosis: 58

Brief Outline: Jim was first tested for sexually transmitted infections when he found a penile lump. A subsequent biopsy confirmed a diagnosis of cancer in early 2010. He underwent a partial penectomy and has been reviewed every three to four months.

Background: Jim is a white male who is a self-employed accountant and lives with his partner. He has two children. His son has passed away and his daughter is training to be a nurse. Jim has become a regular church goer and was recently confirmed.

More about me...

Jim first noticed a small lump on his penis in June 2009. However, devastated by the recent death of his son he thought little of it. It grew in size over the next four months and eventually opened up. It wasn’t until January 2010 that he decided to see his GP who referred him to his local hospital. Here they tested him for several sexually transmitted diseases which revealed nothing and so he was referred on to a consultant urologist at another hospital. Jim was told that the lump might be malignant and when a biopsy confirmed the diagnosis he was admitted for a partial penectomy (it was now march 2010). Years earlier he had undergone a circumcision and he was told that this might have been the precursor of the cancer.

The operation involved removing the head of the penis. Jim now feels that had he gone to his GP sooner, this might have been avoided. He was in hospital for a total of five days and was surprised at how little pain he felt. His overwhelming memory of the experience is hating the catheter he had to wear, something he found uncomfortable and awkward.

Throughout his ordeal, Jim was supported by his sister and his daughter, although he hadn’t taken anyone into his confidence until he had seen his GP. He found it relatively easy to share personal information with his close family and friends as they had been very supportive following the death of his son. Everyone was shocked and saddened by his news and everyone was there for him when he needed them.

Jim was given some information about penile cancer and its treatments, and searched online for additional resources. He felt that none of it was in sufficient depth or detail. He felt that his emotional needs were particularly ill served.

Returning to work after three weeks Jim found that the only problematic aspect of his treatment was difficulty with directing the flow of urination. At first he found he had to sit down when using the toilet but now he’s started to stand again. He attends the hospital for check-ups every three to four months and had ultrasound scans to make sure there are no cancerous cells in his inguinal lymph nodes. Lumps have been detected in his right lymph node but at this stage they are fatty lumps rather than cancerous cells. It is now eighteen months since the operation and Jim is looking forward to his test results remaining clear over the next five years with his check-ups becoming less frequent.
 
 

Jim had noticed a pimple on his penis in June 2009. He had just lost his son and was so devastated that he didn't really think about it. In January 2010, he decided he should go to the hospital.

Back in June 2009 I noticed a pimple on the head of my penis. This was the first time I’d ever seen it and it came immediately after the death of my son. And I didn’t really think any more about it because I was in... so devastated at the time. However the pimple carried on being there, didn’t go away. And a few months later, I think November, it actually had got bigger by then and it actually burst open. Wasn’t that terribly concerned but... and left it until January of 2010. At the beginning of January I thought I’d better go to the hospital and have it checked.

Jim's doctor recommended that he visit the local hospital. At the hospital he was tested for various sexually transmitted diseases, but all tests came back negative. He then went onto have a biopsy.

Wasn’t that terribly concerned but... and left it until January of 2010. At the beginning of January I thought I’d better go to the hospital and have it checked. And my doctor recommended me to the local hospital where they tested me for various sexual diseases and it was none of those. They couldn’t work out what it was and sent me to another local hospital to the urology department and a specialist had a look at me. This specialist suggested that it may be cancer and that he had to take a biopsy. I was asked in at the beginning of February, which was about 3 weeks later, for this biopsy and it came back malignant.

After his operation, Jim returned to his doctor at frequent intervals to have ultrasound scans and checks.

After the operation I’ve been seen by the doctor at frequent intervals. Basically every three, four months. And also have had been receiving ultrasound scans to confirm that everything is okay. The doctor has been checking the various the two lymph glands in the groin area. And the ultrasound scans have confirmed that everything has been fine. I do have some lumps on my right lymph gland but they have been determined to be fatty lumps as opposed to anything to do with cancer. And up until now the everything has been clear. So this is approximately 18 months after the operation.

Jim's sister and daughter were able to help him to prepare his mind before going in for the operation.

I had my sister and my daughter. My sister having been a nurse, you they did help me a lot in you preparing my mind for going in. But being a very busy professional person that did help me actually go through the days and there was… not a great case of concern on my mind and worry. It was very more sort of… pragmatic approach of well I’m going to have this operation and but you know let’s hope the consultant doesn’t take off more than he needs to. And I’ll be grateful for what’s left effectively. So that period went fairly quickly and I believe and you know it… did we... I had the operation and I was very pleased with how it everything went.

Jim found talking to other patients helped because they were sympathetic, which helped to release his thoughts and feelings.

Did you find it helpful to discuss your condition with other patients?

Definitely. With the little discussion we did have I think you know that… they were certainly sympathetic because they they’d never experienced or heard of it before themselves. And… it was nice to be able to talk about it with somebody on the ward after the operation because you need to release your thoughts and feelings and I think talking to somebody you know is really important. I can’t really stress enough on that.
 

Jim was becoming more concerned about the pimple on his penis so he decided to tell his sister and daughter. When he got the results of his biopsy he was quite open with people.

I took my sister. My daughter came with me. But they just waited outside whilst I went in for the consultation.

Were they aware of what your symptoms were at that stage?

Yes certainly by although I hadn’t told anybody about the about the pimple earlier on I, because I was becoming more concerned about it, because it wasn’t going away, I decided then that yes I shall take you know them into my confidence and I did that. I suppose really at the beginning of January when I started going to the doctor… for them to check me out.

When you got the results of the biopsy did you tell anybody else?

Only my close family. And close friends. I felt quite open to speak with people at that stage because everybody had been so close to me since the death of my son the previous year that it seemed quite natural to actually talk about it. It wasn’t embarrassing. And I had a lot of comfort from talking with them because they felt they could talk to me about it quite openly rather than something that’s hidden. Which I felt was quite refreshing. And certainly was very, very helpful to my state of mind.

Did you tell your work colleagues?

I did. I looked at the situation as being it could have be my finger, my leg or my arm. It was a part of my body that you know… every man has one and every woman knows a man who’s got one. And I looked at it quite pragmatically….in that sense. So I had no real worry. I referred to it as being penile cancer so that’s probably a description that people haven’t heard of before then but they certainly have become aware of it since.
 

People were shocked when Colin told them about his diagnosis, they thought he meant that he had prostate cancer.

How did people generally react when you told them what your condition was?

Oh they were they were shocked and saddened and their general attitude was you know well you know we’re here for you if you know…helpful, understanding. There was no, there was no question of them not being otherwise.

Did they have any questions for you?

No I think generally they were quite …sort of… decent in by not being too…. they were not too keen to be too nosy about what was going on. They just understood that I had a problem that obviously I had to have an operation…. with it and they were they were just generally quite sympathetic.
 

Sharing the problem with family and friends, there has been no impact on Jim's confidence or self-esteem. He thinks it's best to be open about his cancer

Has there been any impact on your confidence or self-esteem?

Not at all because really I’ve sort of shared this problem with family and friends. It’s not a taboo subject. It’s been kept in the open which I think... you know… if I’d lost a foot that would obvious. This isn’t obvious because it’s covered by clothes and I think it should not be taboo at all. I think it should be brought out in the open. I felt better for it I’m sure. And so as a result people have reacted accordingly. And I felt that… you know… it’s been... it’s been acceptable. You know I haven’t been sort of shunned [smiles] by any part of the population or anything like that. It’s been accepted. And therefore I feel fine with it.
 

Soon after his operation, Jim had an ultrasound scan and a check-up with his consultant; he now sees the consultant roughly every three months.

What kind of aftercare did you receive from the hospital?

The aftercare consisted of an open invitation to contact them if I have any problems. The consultant wanted to see me within a few weeks I believe of the operation, followed then by a scan or the other way round [smiles]. I can’t quite remember. But the ultrasound scan obviously checks to see whether the cancer has actually spread to the lymph glands in the groin. And luckily enough there was no sign of that. I’d got some lumps in the groin but they’re deemed to be more like fatty lumps than cancer cancerous lumps. And since I’ve been seen approximately every 3 months or so... by the consultant. Generally after having an ultrasound scan so that he can discuss the results. But when I do have the ultrasound scan I’m told straight away of the results. And thankfully to date, which is 18 months, everything’s been clear.

Do you have any blood tests performed at those check-ups?

No. No. No. All that is done err the scan is purely a scan. There’s no blood tests at all and when the consultant sees me he just comes around and he feels the groin area to see if there’s anything suspect developing there.
 

Jim could walk up and down stairs, it was a bit slower but it wasn't uncomfortable.

Initially I stayed home for a week but I then returned to work because I felt I was capable of going back to work after a week. A lot of people said, ‘Well you should have taken a month off’ but frankly one week was enough for me. And the only area that was giving me problems was actually going to the toilet. The rest of it I could walk... walking up and down stairs was a little bit slower but not... it wasn’t uncomfortable and it wasn’t difficult but a little bit slower than I normally would. But going to the toilet was definitely the more tricky situation. But my memories are coming back now and I would say it wasn’t a big issue at all. I was lucky that that it wasn’t painful. And there were no problems attached to it. Just taking care really and being careful, so…

Jim says that you can't see scars because the skin has been pulled inside.

Well you can’t really see much because the skin has been sort of pulled inside. It’s not left out in the open and you can see visible scars. It’s really quite clever, you know, I’m very impressed with how it’s all gone. But you still feel a bit strange not having a head there. But the... you... well I can’t really see any scars. I think you’d have to pull the skin back quite a bit… for that. But there’s not much give at the head either because it’s all very tight there. So you can’t really pull the skin back as you could before.

Jim hated every minute of wearing a catheter. He found having the bag strapped to his leg was much more comfortable than letting it hang loose.

Did you have a catheter at that point?

I did and I hated every minute of it [Chuckles]. It’s... you can either have it hanging loose, which is not very comfortable at all, or have it strapped to your leg, which was much, much better. So I would suggest that if you can have it strapped to your leg and it then it takes a lot of pressure away from the penis. Because after an operation when you’ve got the catheter it’s not a comfortable experience at all. So I didn’t like that [chuckles].
 

Jim says he is fortunate to have a very good partner. He is still able to have sex after his operation and finds it amazing how humans can adjust.

Has there been any impact on your sex life?

I’m very fortunate that I have got a very good partner. And everything is accommodated. We’re…we seem to be quite satisfactory and… there doesn’t seem to be any real issues there. In fact there aren’t any issues as such. Obviously the penis is shorter. But you know you… human beings can... adjust and amend and this is quite... quite amazing actually. It’s been surprising. Quite illuminating and we’re happy on that front.

Are you able to obtain an erection? As you were before?

Yes. Yes. Yes indeed. Shorter but definitely yes. And to add to that it’s thicker than before. So I think really the fact that it’s not as long maybe the pressure has now pushed it out rather along the length. And as a results it’s become thicker.
 

Jim says that there is nothing to be ashamed of, so don't keep it to yourself.

I would say don’t keep it to yourself. Speak openly to people that are close to you initially. It’s a part of your body that’s got to be seen to… and dealt with like any other part of the body. Nothing to be ashamed about. And just make sure that the doctors get on with it and advise you as clearly as possible as to what the state is at present with you. So… don’t keep it to yourself effectively.

Jim was interested to see how much had been taken away after his partial penectomy.

When you came to can you describe how you felt?

Tired. There was there was no feeling of sadness or anything else particularly. I think I was glad that the operation had gone. I was interested to see really how…. how much had been taken away. But I was sort of facing it straight basically. And I’m glad I did.

How long was it after the operation before you did see the results?

Quite soon I think. Quite soon. I suppose once I can’t remember exactly but it might have been in... no I don’t think it was in the waiting room... in the recovery room sorry. I think it might have been when I went back down and I went into the bed in the ward. I think it was there. So it was... it wasn’t long. Within roughly an hour after the operation I suppose.

How did you feel when you did see the results?

I was okay with it. I was okay. I wasn’t feeling you know.… maybe sort of I was…. he took off really that it was the second choice of the two choices that you know it wasn’t just the first choice of taking the cap off, drilling out the cancerous part and putting the cap back on. It was the second one of actually amputation. And that I knew was going to be one of the choices. And it just happened to be the one that he had to do. I trusted the consultant to make the best decision. And you know I’ve got no doubt that that was the best decision.
 

Jim feels that his concentration at work was clouded by the death of his son, and that his own illness and treatment has had less effect on his work performance.

I would say that my concentration with work has been a little bit sort of clouded with the fact that my son had passed away the previous year and it’s difficult to be able to say whe... you know whether…. it’s a mixture of the two things or the one thing. Certainly with my son passing that’s affected my workload my work ability. And this operation I think has probably not affected my working ability that much. So financially I would say that…. probably not much.