Tom ' Interview 09

Age at interview: 71

Age at diagnosis: 69

Brief Outline: Tom had some inflammation under his foreskin. Tom went to his GP who prescribed him a variety of creams. Tom's condition got worse. Further tests revealed evidence of cancer. Tom went on to have a circumcision and the affected areas of his penis removed.

Background: Tom is a white-British married male in his early seventies, he has one grown up child and seven grown up step-children. Tom is full-time managing director of a landscape design company, and is an active garden enthusiast.

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Tom had some inflammation under his foreskin, it had been like that for some time but had not caused him any problems so he thought nothing of it. The problem wasn’t improving so Tom decided he should see his GP. Tom’s GP prescribed him a variety of topical creams across a number of visits, spanning approximately 12 months. At first the creams appeared to ease the problem. However, after a while the problem got worse and worse. 

 

Tom’s GP referred him to see a skin specialist. There was a substantial waiting list to see the specialist, and therefore Tom made the decision to see a private dermatologist. The dermatologist immediately felt that the problem was something more serious than a rash or inflammation and booked Tom in to have a further tests a few days later. After this meeting Tom suspected that the problem may be penile cancer, as a younger relation of his had recently been diagnosed with the condition.

 

Tom attended a clinic with his wife to receive the test results. The specialist informed Tom that traces of cancer were found and he should see a urologist. Tom met the urologist the same day, who quickly stated that an operation would be required. Tom was referred to a Specialist Penile Cancer Centre. The referral process took a few weeks, over this time Tom tried his best to enjoy himself over this time to deflect some of the worries. Tom also conducted some research about the surgical procedures, and was reassured that the operation appeared to be a relatively simple one when compared to other procedures Tom had, had in the past. However, what did concern Tom was how the surgery may impact on his life afterwards.

 

The date of the operation arrived. The operation was performed under a general anaesthetic and therefore Tom was unconscious throughout the whole procedure. During the operation, Tom had his foreskin removed (a circumcision) and also the affected areas of his penis. Tom was surprised to be released from the hospital within 24 hours. 

 

When back at home, Tom found that there was a lot of swelling and his penis looked different, he was however able to go to the toilet without any problems. As the scarring healed up, Tom became concerned that his penis had no sensation and he could not get an erection. After a six weeks or so Tom contacted the hospital, who reassured him that this was nothing to be too worried about. Approximately a year later Tom’s penis began to function as normal. 

 

After the original operation the scarring on Tom’s penis began to get bigger. Tom was worried that the cancer had returned. Tom spoke to the cancer hospital who reassured him that the scars were normal. Tom is very positive about his future and feels as though his health has improved over the past year. 

 

Tom didn't consider that he had a 'condition'. For a time he did nothing, and even after getting medication to put on his penis, he took a while to return to the GP when it hadn't cleared up.

Yes, because I didn’t really consider it to be a ‘condition’ if you like, in inverted commas. Just as one naturally, you know, you get an ache in your back you don’t go to the doctor on Day One, you see how it progresses and this was very, infinitely small progress and you know it’s not something that you’re sort of examining on a daily basis and you’re seeing it. It’s not like a cut on your thumb that’s catching everything that you touch and therefore [coughs] there was quite a period of time that I did absolutely nothing and when, even when I went and got the medication to put on it ah, I was fairly fastidious in using it ah, and as I say there did seem to be some improvements but ah, there was probably eighteen months at least to possibly two years before the final diagnosis, so yes there I mean there was obviously delay on my part in not going back immediately I’d finished the sessions of treatment of seeing how it went because it was not in my mind that it was anything particularly more than a nuisance, and obviously in my own GP’s mind as well, he wasn’t too concerned.

Tom's dermatologist told him that he had more than a rash but he couldn't diagnose it without taking a biopsy of his penis.

Immediately I saw the dermatologist he immediately said, ‘I think there is something more than just a rash or inflammation. Ah, I can’t really diagnose it without, ah doing a small biopsy on it,’ and so he decided that he would do it himself, a few days later, so that was done and after that we had – my wife and I attended, ah his clinic and he informed us that there was in fact traces of cancer there and he would then immediately forward us to the urology department of the hospital where I was actually being seen in at that point in time and he personally conducted acro... us across the hospital and the urologist was involved and they decided more or less instantaneously that they would do an operation.

Tom was diagnosed with penile cancer by a dermatologist but was taken straight up the corridor to talk to a urologist about treatment.

My immediate thought was… I can’t really say shock because I’d already got in my mind because the dermatologist on examining me said he thought there was something else there and the inferences at that point were that it obviously it could be cancer, my wife was far more concerned, as I say, than I was at that point and I as I was fairly philosophical that ‘ok I’ve got cancer, there are worse cancers than I’ve got’ because I didn’t know anything about it but I, they told me immediately at the time of diagnosis that it was effectively a minor surgical operation, could probably put the scene right and it could be arranged immediately ah, so I there wasn’t any delays between being diagnosed and proposed treatment. It literally was a walk the length of the hospital to see the urology surgeon to decide on an operation and a discussion took place, and there was, as I say, almost immediate action, I really can’t fault it.

Tom only heard about penile cancer when his nephew got it; his GP had never heard of it.

I don’t know how prevalent it is, I don’t know any statistics to say whether I’m unique or not as I say, I’d never heard of it until my nephew was diagnosed with it and then immediately afterwards, I get diagnosed with it and that seemed sort of you know, ‘oh, there must be a lot of it about then’ but perhaps there isn’t. Certainly my doctor had never seen it before and I think that, you know, it’s… I’ve no real further answer than that.

Tom was given written information about penile cancer after being transferred from his local hospital to the specialist centre; at that stage he mostly wanted to know what would happen.

Were you given any information by the medical professionals?

Ah, I’ve got to think back, and be unsure on that, we were given information, yes ah, and I think it was when I went to the cancer specialist hospital because talking to the urology department at the local hospital, they were originally going to do the operation, they then transferred me to the specialist cancer unit and it was there that they gave me written information on penile cancer at that point. So we were able to understand it a little bit more but we were mainly understanding or trying to understand what would happen to me, not what had happened to me if you understand that, you know I’ve got it, ok I’ve got it how you going to get rid of it, that’s really what was [hesitation] the sort of thought in mind was.
 

Tom was attending two large parties with friends, associates and relatives and used these events to tell people who passed the news to others.

I didn’t ring round all the family and tell everybody on ‘Day One’ but as I’ve mentioned already I’d two large parties planned therefore I was, I was meeting probably nearly two hundred friends, associates, relatives within the next week or two anyway, so it didn’t take long, if you only had to tell a couple and it was round immediately to everybody there was mixed reactions from people. Some people were almost in tears and very sorry, some people always know of somebody who’s had something and been cured and somebody else knows somebody who’s actually died and therefore [chuckles], you know, there was, there was sort of mixed reactions all round. But as I said we’d plenty of deflections taking place so we didn’t worry too much about it, but yes we didn’t put it on the Internet but we didn’t keep it a secret either.

Tom had a circumcision and some lumps removed from the side and end of his penis under a general anaesthetic; he felt no pain and went home within 24 hours.

I had an operation whereby they removed the whole of my foreskin, they took some (for want of a better term) some lumps off the side and the end of my penis and I didn’t feel a thing because obviously I was unconscious at the time. I was rather surprised to be out of the hospital within 24 hours, back home and not really inconvenienced too much. I’d obviously a lot of swelling a lot of disfiguration but all my bodily functions – I could go to the toilet, I could pass water without any problems, and I was sort of, well quite, quite relieved that that particular part of it was over.

Tom had previously had surgery. He viewed the operation on his penis as similar to having an abscess on his tooth removed.

Did you have any fears or anxieties leading up to the operation?

No, no I’m not given to that nature. I’m not really that kind of a person, as I say I’ve had major surgery in a number of things and minor surgeries over a period of time, for various operations and as far as I can see, surgically, this one was very little different than having an abscess on your tooth cut out, you know, and things that you know so, I wasn’t too worried about it. Obviously it’s in a sensitive part of your body and even thoughts of it bring tears to your eyes but you know I could live with that. If I was going to get effectively a cure then I thought that that was small change compared with what could happen.
 

Tom was surprised to be out of hospital within 24 hours of his operation and not inconvenienced too much. He was relieved that he didn't need further treatment.

I had an operation whereby they removed the whole of my foreskin, they took some (for want of a better term) some lumps off the side and the end of my penis and I didn’t feel a thing because obviously I was unconscious at the time. I was rather surprised to be out of the hospital within 24 hours back home and not really inconvenienced too much. I’d obviously a lot of swelling a lot of disfiguration but all my bodily functions – I could go to the toilet, I could pass water without any problems, and I was sort of, well quite, quite relieved that that particular part of it was over.

I was told from Day One that surgically the operation had been successful and would have to wait then for the final results and things, that’s obviously the final results, th-that came through, they said ‘yes everything appears to be ok. You do not need further treatment.’ That was somewhat of a relief because I, it wasn’t the operation that was causing me any anxiety but if I had to go for further treatment, and what would that treatment be and what would the effect be, you know, one associates with cancer all your hair falls out, everything happens and things like that and I didn’t fancy a course of treatment and one had to consider even refusing a course of treatment at my age is it necessary you see?
 

Tom needed some time away from running the family business but, as a semi-retired man, he enjoyed having more time for his gardening hobby.

Yes, it’d, any, anything impacts on it but it’s not a singular business that I’m involved in it’s a limited company run by the family – my wife is effectively the head of it anyway, and therefore me being absent takes a pair of hands out of it but since I’m pretending to be partly retired anyway, very unsuccessfully, but partly, it did force me to have a little bit of time off and give me if anything a bit more time for showing my flowers than I would have had under normal circumstances. So yes it did have, it did impact itself on work but in my personal point of view perhaps a good way.

The scarring after Tom's operation appeared to be getting bigger which concerned him.

Ah, so that’s something – a side issue on that also was the fact that the scarring appeared to be getting bigger and I then became fairly highly concerned. This was about the October period as I’d had the operation in July. And they had said you know that ‘you should start to heal up’ and it had done but the, the, the scars as I said started to look a little bit different and so I was then concerned, you know, ‘has the cancer come back?’ ‘Was it not successful?’ and all these thoughts go through your mind. I rang up the cancer hospital again and I’ve got to say that with all the calls and everything that, where I sort of, they were very, very good, there was no ‘we’ll put you on hold for a minute’ or anything like that, it was they were very, very good. I had a discussion with them and they said, ‘Well I don’t think it’s anything to worry about but you’d better come in and we’ll have a look at you. Can you come in next Wednesday’ or whenever it was. So within a short space of time they had me in there and they examined me and they said, ‘No you’re perfectly ok. You’re due to come in again in about six weeks time but as far as we’re concerned you can now leave it for six months time.’ That things are fine, that some scar tissue takes different forms and instead of being the normal scars that drop off this is the keratin which nails and horns are normally made of and it’s that form of scarring that, that’s taking place at the moment in this tissue. So effectively I was growing a horn on the end of my penis, which obviously [laughs] creates a whole new scenario of feeling horny you know! And I’ve got to say it’s splashed a few glasses of wine over a dinner table since when we discussed it you see, because it, there has to be funny side to certain things and this was one of them.

After his penis began to heal up, Tom was not able to obtain an erection and he tried Viagra. A year later his penis started to function as normal.

So, gradually the scarring started to heal up. I was a little concerned that, that sort of the, when I say originally that the bodily functions took place, yes, I’d no problem passing water but, a month after when the swelling had disappeared there didn’t seem to be any feeling in my penis at all, it didn’t seem to react if you like, there was no signs of an erection there was nothing that would sort of move it if you like, and this did cause some concern. We made lots of jokes about it and we did all sorts of things and after a, a period of I think it was about six, eight weeks, I did actually phone up the hospital and they said, ‘This is quite normal, that you know you have had major surgery you know. The nerve endings will be, sort of everything will be affected and don’t worry too much about it.’

So then saying that but you do think about it. I’m not a worrier and I didn’t really worry too much but it was, it was a thought in your mind in that ‘will it ever function in that direction again?’ Sex had played a reasonable part in my life up to that point and whilst I can, I can’t say that it’s twice nightly at my age, it isn’t, but on the other hand it, it did play a part and it obviously wasn’t playing the part and eventually I went to my own GP and I said, ‘I’m not functioning in that direction’ and he looked a bit astounded at me that I ought to be even thinking I should be but he did then prescribe the equivalent of Viagra or whatever it was that might help the situation, but unfortunately I couldn’t have them on the National Health so the, we worked it out, I think there was the cost that we were paying was about 15 pounds apiece or something like that so it was - it took some of the urgency out of it, but I did get some, I did try it and we had lots of laughs about it and it did seem to work a little bit. But I think there was only four in the actual packet that we got and to my knowledge we still have actually got some at this moment in time, nearly a year later whereby it started to function normal again and it was probably a bit unnecessary and me being more inpatient than anything else.
 

Tom recommends seeking medical advice quickly for any problems as earlier detection usually leads to a more successful outcome.

It’s really the message to get to people who are wondering what they’ve got and if there is anything that’s being questioned that they should seek medical advice on a fairly immediate basis. That obviously, like all cancers the earlier it’s actually treated ah, the more success rate there’s going to be. Therefore don’t hesitate if you think you’ve got something.

Tom says penile cancer has a high cure rate and is likely to need a lot less treatment than other cancers.

I would say that view it for what it is. That if you had skin cancer on the back of your thigh and you had to go an operation and have it removed you would think ‘oh, it’s not good’ but you wouldn’t think that it was sort of major and really effectively it is only the same thing, the fact that it’s in the more sensitive part of your body it doesn’t make the surgery any more difficult and it obviously can have a high cure rate and it’s less likely to need a lot of the treatments of other cancers which are internal which one hears about and which obviously make the headlines much more than this one does, and I would say you know, go with the flow, treat it for what it is and don’t get too uptight about it that at the end of the day it’s most likely to be resolved for you.

Tom believes that GPs should receive greater education on how to recognise the signs of penile cancer.

My only comments would be that the GP, I feel to some extent, let me and himself down by not being able to recognise it in the first place and therefore it’s not the actual people dealing with it that really need further education but the colleges and medical studies profession that need to bring it more to the fore. There needs to be more general awareness you know, many of the other forms of cancer now, particularly breast cancer for instance, where there’s a screening process taking place on a regular basis, I don’t know what can be done about this but one would think that if you went to the doctor with it where it’s plainly visible to the naked eye, that it ought to be recognised and it obviously isn’t – I’m not condemning my doctor in any shape or form because you know, he obviously did not know and I think that that’s something that needs addressing at the source.