Interview 40

Age at interview: 32

Age at diagnosis: 27

Brief Outline:

Testicular cancer (teratoma) diagnosed in 1997. Orchidectomy, followed by active monitoring (surveillance). Then secondary tumour found in the spermatic cord. Surgery to remove the tumour and 4 cycles of chemotherapy, each cycle with 7 days in hospital and 14 days at home.

Background:

Professional; married, no children.

Explains that his first symptom was severe pain in the left testicle.

I was diagnosed in July 97. I was over staying at my, with my wife to be's parents in their house, we were back for a christening and I had this severe pain in my left testicle when I woke up one morning. And I instantly knew that something wasn't right and luckily it was the day I was due to fly home. 

And I was in that much pain I wasn't convinced I was going to be able to fly but I took quite a fly painkillers and got on the plane. And I remember I was sort of sweating profusely on the way home on the plane. And I got off the plane, the plane landed about quarter to 4 in the afternoon, I was picked up and luckily my own GPs is only about 20 minutes from the local airport. So straight down to my GP's and sort of demanded to see my doctor who examined me and was very honest with me and said "I think, I suspect that you might have testicular cancer. It's something that you're going to have to, I don't want to shock you but you've got to bear in mind that this is what I think it is, that there's a lump there which needs to be examined." 
 

Suggests that female hormones in the food chain may be a reason for the rising incidence of testicular cancer.

Do you ever think about causation or anything like that?

No, again it's just through delving into information myself where I can find it. One of the causes that has been recognised is whenever you're younger, children who have an undescended testicle are more prone to testicular cancer in the long run. Now in speaking to my parents they can't remember and I certainly can't remember if that was ever the case with me. So I think they would've remembered, so I don't think you know that that was the cause of mine. Other causes; you can ask one specialist who'll have an opinion and another specialist will have completely the opposite opinion. But from looking again on the Internet what some Internet sites are suggesting is that the food chain nowadays and the processed food, there is so many female hormones in the food chain that they think that this is having an effect on the increased rise of testicular cancer among men. Again those are from mostly American websites who tend to be a little bit more diverse in their thinking. 

Describes the discomfort he felt, and the wound that had to be dressed by the local nurse after he got home.

Yes after I had the day surgery I was possibly going to get home that night but I was still too groggy from the anaesthetic. I was getting a reasonable amount of pain and I could've either come home or been given morphine for the pain I was having, and I decided to take the morphine, which they wouldn't let me go home with, so I stayed in overnight and I was allowed home the following afternoon. 

Now the way the surgery left you, it was explained to me by the surgeon beforehand that I would be extremely uncomfortable afterwards and he was right, there's no doubt about it. I had 15 staples, yes 15 staples which, metal staples in the area of the surgery er from on the left side a couple of inches below the belly button, stretching down to the area of the tumour. Now that, there was, the area of the wound had to be dressed every day, which involved the local nurse, practice nurse to come out to the home and bathe the area and change the dressing. Which again is another part of the illness, a complete stranger is coming round to your house and changing dressings in a very private part of your anatomy but again you get used to it very quickly. 

I found it difficult to sit up for a couple of days. You can't really bend over, put your shoes on, put your socks on, it leaves you a little bit immobile for a few days. But after that I found things came back quite quickly in terms of I'd say about a week later I was walking around, certainly wouldn't have considered (laughs) running or doing any sort of exercise for sort of, for three weeks to a month but after a week you're quite mobile.
 

Explains that he needed further surgery to remove a secondary tumour in the groin area.

Yeah when I discovered my tumour marker levels had risen again they looked at the specimen that was removed from the first surgery and it was explained to me that the tumour had spread up the spermatic cord and where they had removed, they had cut through an area of what looked like under the microscope an area of tumour. And they recommended that I have another surgery to remove further up the spermatic cord, to try and catch where they think it had spread to, which is what happened. I can't remember how soon after, very soon afterwards, again I went to the same surgeon at my local hospital, who removed further up the spermatic cord. And it was like another, I thought it was going to be another 'wait and see' process after that again but after I had convalesced for a couple of weeks and going through, the same another, another 15 staples in the same area. It took a little bit longer to recover the second time around because it was a second opening in exactly the same area. And it definitely took me I would say three or four weeks to be able to walk around comfortably again in that area. My oncologist said then that because they had discovered that the tumour had spread, that I was going to have to have chemotherapy.

Explains that he assumed that surveillance was the best option for him and that he was shocked to learn about a recurrence.

Were you a given a choice of whether to follow this surveillance route or whether to have some chemotherapy straight away?

No my specialist at the time, my oncologist said this is the route they take. Now I was told that that's what they did and I assumed that that was what they did with all patients in my case. I would assume unless it was obvious that the tumour had spread to other areas, which I think after the surgery if they take your blood levels and they're high they know that the tumour is somewhere else in your body as well

Right.

So with me they took my bloods after my, before my surgery which were high. I had the surgery and then after surgery they were normal again. So that's why they adopted a 'wait and see' policy with me. Now I did that for four weeks and on the fourth week I found out in a very, er '., one of the few occasions throughout my illness that I was not very happy with the treatment that I received. The fourth week I was in the cancer ward, getting my bloods taken and I was on the chair with a lead in my arm and one of the nurses was drawing the blood. She'd just finished drawing the blood and I was holding a piece of cotton wool on the area of the needle and standing up sort of just about to put my coat on and walk away and I said, "So when am I going to go monthly or is it going to keep going weekly for another week?" and one of the nurses turned round and said, "Oh, it's definitely weekly because your bloods are starting to go up," you know, and that's how I was told that my tumour marker levels had started to rise, was by a nurse inadvertently saying "Oh your bloods have started to go up." Now that to me was a very wrong way of breaking the news to somebody because instantly it's just shock and worry.

Awful.

Now I, I can't remember what I, when I saw my oncologist after being told that, was it the same day or was it the next, a couple of days later. I think it may have been a couple of days later that I got an appointment to see my oncologist who explained to me that my tumour marker levels were starting to rise again which means that the cancer had spread to somewhere else. 

Recalls that the consultant used to discuss his case outside his room without him.

I've found that on the weeks that I was in hospital receiving the chemotherapy the one day a week the oncologist specialist would breeze into the room with his entourage of junior doctors with him, he would stand at the bottom of the bed, er look at your chart, look at the percentage of the different drugs that were being given to you and the chemotherapy treatment. Ask you very quickly how you were feeling, a very quick examination and then he would go out of the room and the door would shut. And you knew because you could hear, hear them speaking outside of the about you. And I almost found myself falling off the hospital bed with a cocked ear to try and hear what they were taking about. It's, that sort of situation is very poor in my own mind and it shouldn't be happening but it's along the same lines as the old style of doctoring and hopefully at some stage in the future that will change.

Says that he doesn't mind people knowing about his cancer and that testicular cancer is frequently discussed

Yeah everybody in work knew that I was ill because of the time off that I had to take. And I didn't mind people knowing the illness that I had. The, I think in recent years testicular cancer is something which is much more talked about and much more, I don't think normal is the word but it's, certainly it's the most common cancer in men between their late 20s and sort of late 30s. If you're going to get a cancer at that age as a man its more likely going to be testicular cancer. So it is talked about a lot and it is, everybody knows really what's involved and I didn't mind people knowing.

So you didn't worry about having to tell people at work?

No, no that didn't bother me in the slightest and even after I was well on the way to getting better, but my hair hadn't come back and I was putting weight on again, I did I called in to work to see my colleagues and a couple of them didn't recognise me to start off with.

Explains that there are people in the hospital who can help with financial problems.

Yes so financially did you go on being paid all right?

Yes the financial aspect of it is all is, again with any serious illness is a big worry on your mind. But again I was lucky with my job that I was on six months full paid before it started to, I would've gone on to half pay after six months so I only experienced just over three quarters of a month on half pay.

Oh good.

Which I actually used up as normal leave on some of it so yeah it worked out quite well. But the hospital have people that can help you cope with that and make sure that if you are having difficulties financially there were people that came round from the social services in the hospital and there were all sorts of forms you could've filled in for financial aid and stuff like that. So that was actually quite well sorted in the cancer ward.

Good.

I think the last thing you need whenever you're going through chemotherapy is to have financial worries.