Interview 05

Age at interview: 46

Age at diagnosis: 42

Brief Outline:

Testicular cancer (seminoma) diagnosed in 1997; orchidectomy. In 1998 lymph glands in abdomen and lungs appeared slightly larger than normal, so thoracoscopy, mediastinoscopy, and bronchoscopy to look for secondary tumours; none were found. One chemotherapy treatment to prevent recurrence.

Background:

GP; married, 3 children.

Explains what his cancerous lump looked like on the ultrasound screen.

Oh a scan is like a microphone, a long, flat microphone, which is applied to the scrotum. You don't feel anything, you see on the screen a black and white outline of what it's looking at and basically solid structures look white, the normal testicle looks white and you can see the outline of the other lump, what you hope to see is a fluid filled lump, which appears black on the screen. In this particular instance it was of a different texture, it was a different kind of white from the remaining testes but it was quite clearly white rather than black. So it was quite apparent this was a malignancy, or at least it was a tumour of some kind and there aren't very many benign tumours of the testicle.

Describes his friends' reaction to his diagnosis, which surprised him.

I mean it has been interesting talking to other people because obviously at various times I've had to acquaint my colleagues with my diagnosis and friends and others. They often react rather more seriously than I would expect them to, you know in shock and horror, and this is something that doesn't happen to people we know really. As a doctor obviously I've seen a lot of people who've had diagnosis, a diagnosis of serious disease and many of them are friends and colleagues so I think I'd probably react in a slightly less shocked way if somebody gave me a similar piece of information. But sometimes the reaction has surprised me, I mean talking to colleagues and people, people would use words like, intimations of mortality, and talk about death and so on. I say "Well I haven't been talking about death really you know." And I always say to people I'd much rather have what I've have than have chronic back pain or depression which lead to much, much more disability and absence from work and can actually blight people's lives far more than what I've had. 

Explains that he had more investigations to make sure the cancer had not spread to his chest and lungs.

So, in order to make the diagnosis, what was necessary was to have what's called thoracoscopy which means a procedure where the chest is opened up and a scope is put inside in order to take biopsies. In addition to a mediastinoscopy where a scope is pushed down behind the sternum or breast bone and samples are taken of the lymph glands around the heart. So they did appear to be rather unpleasant procedures but in the end I felt probably this was the lesser of two evils because without, I mean number one, if in fact I didn't have secondaries, without the biopsy evidence I would be placed in a high risk group, I would need to have intensive chemotherapy and also I'd be uninsurable and possibly unnecessarily so. So in the end I thought let's go ahead. I was referred onto a hospital in London because these procedures are not done locally. I went down, we're going on about 6 weeks after the initial diagnosis, went down to talk to the surgeon, he had a look at my films and agreed that a biopsy would be appropriate. I came in a little while after that, I have to say I was well received there and well looked after. I spent a week in total in hospital because as I discovered these procedures are very much more unpleasant than for the example the equivalent in the abdomen. If you have a laparoscopy you can often go home the same day but a thoracoscopy is quite a big deal.

Where exactly were the incisions?

The incisions er I had a single scar on the side of my chest where the scope was put in, they have to separate your ribs to get it in so the external scar is quite small but then internally there was quite a large scar. I had to have an incision across the top of the sternum so effectively right across my throat. It has properly healed up, it's not visible now. So that was the thoracoscopy and the mediastinoscopy and a bronchoscopy where they pass a scope down into your lungs and they have a look around the bronchial tree

It's quite major.

Bronchoscopy doesn't involve any incisions. The rest of it was quite an invasive procedure. As I say I'm quite glad that I had it done because it turned out that the nodes which were removed were not in fact malignant. Now there was a lot of debate as to what they actually were and to be honest with you to this day I don't, I still don't know what they were. They were described as caseating granulomas.

Says that he is glad he had a prosthesis and strongly recommends one for a man in his teens or twenties.

On the Friday then I was scheduled to go in, my wife came in with me, I was a day patient at the hospital. I had a telephone conversation briefly with the surgeon and I had to talk to him, whether, something that I'd seen from my experience as a doctor was people having testicular prostheses and I asked him whether he thought it might be a good idea to have one. And he didn't have any strong views but I think he felt since I asked about it, it would probably be a good idea to put one in. And to be honest with you I think in terms of my self-image I feel quite glad that that was done.

Did he show you what it would be like?

No, no because I just had a telephone conversation with him.

Oh right.

And I didn't know a great deal about testicular prostheses, I mean I again looked on the internet and there were a lot of American Web sites where people were talking about how difficult it was to get them in America because of silicone and all the scares that there had been, and that in this country at that time it was not a particular issue. I don't know whether it's an issue now but on balance it seemed to me that there was no compelling reason not to and that from what I knew of myself I'd probably feel a bit better about myself if I did have one. I didn't feel terribly strongly about it and if I'd been told, "You're a married man of 40 odd so forget it, this is for teenagers," I don't think I'd have felt too hard done by. But as I say I'm quite glad that it was an option. It was an issue I raised, it wasn't an issue that was raised by them and I think if I hadn't said anything it wouldn't have arisen.

For other people who might want to know does it feel very different to you or to your wife?

It doesn't have any sensation. The prosthesis itself is slightly harder than the normal testis but I think if a doctor examined me he'd probably be hard pressed to tell the difference

Oh right.

It has a slightly more sort of squash ball feel about it but it's the same size and shape as a normal testes. 

I think it's probably worth at least thinking about and discussing with family, the question of a prosthesis, because as I say I was quite glad I had that and it wasn't something that was immediately offered to me. And I think for somebody having the diagnosis, certainly in their teens or twenties I would strongly recommend having a prosthesis, just because of the issue of self image and you know if you get into a relationship you don't want to be sort of frightened of having sex without first telling the other person about your experience.

Suggests that gender identity is not only about body shape but more to do with a state of mind.

Can you say a little bit more about how the whole experience affected your sort of feelings of self identity and masculinity. You mentioned you wanted to have a prosthesis because you thought it might be better from that point of view?

Mm, I didn't feel I was any less of a man because you know, because of what was done, I think if I'd lost both testicles I'd feel that would be a considerable loss, relying on hormone injections and so on. But I don't think gender identity is about body shape anyway, it certainly isn't purely about that.

What do you think it is more to do with then?

It's very much more a state of mind and it's about how you see yourself and how other people see you. Again my wife was probably the most important part in this, was very emphatic that from where she was standing it wouldn't make any difference. I talked to her about the question of prosthesis and what would she think about it, whether I should have a prosthesis or not, and she said it wasn't an issue for her but if it was an issue for me then may be that would be a good idea. But you know I don't think, I don't think her perception of me as a man is, has a great deal to do with appearance.

Explains that a seminoma doesn't produce any change in tumour markers but it can be useful to can be useful to have a blood test.

Blood tests, yes I have blood tests each time I'm there, in fact the blood test is done after I see the oncologist, so if there is an abnormal result it will probably be communicated to me via my GP. The nature of seminoma is it doesn't produce any change in tumour markers so one doesn't do them with the expectation of finding anything wrong and indeed one could have quite a significant relapse without any change in blood tests. So you know a normal blood test may be a false reassurance. On the other hand I think it's because of the fact that occasionally tumours can be mixed, it probably does no harm to have the tumour markers done. 

A mixed did you say?

Sometimes one can, sometimes what appears to be seminoma may be a mixed tumour and therefore occasionally it can be associated with production of hormones.

Suggests that there are other illnesses that are much worse than testicular cancer.

But I think most importantly for people with the condition, the word cancer is very frightening, and in this case I think unjustly so. I think it probably feels more of a shock than it needs to be, because in my experience as a doctor I've come across vast numbers of people who have conditions which on paper look less, look less intimidating but in reality are very, very much more limiting and much more damaging to one's quality of life. And I mentioned earlier people with chronic back pain and people with depressive illness or people with inflammatory bowel disease, diabetes, I mean one can think of many conditions which have much more impact on one's quality of life. So you know certainly I would urge people to think positively about the condition and not to be unduly phased by the diagnosis.