Interview 37

Age at interview: 50

Age at diagnosis: 39

Brief Outline: Diagnosed with testicular cancer (seminoma) with secondary tumours in 1991, followed by right orchidectomy and chemotherapy. In 1993, pain in lower abdomen. Left testicle was found to be fibrosed and infected. Left orchidectomy, and testosterone replacement therapy. Also has kidney disease and diabetes as the result of treatment.

Background: Retired Managing Director; divorced, 2 children.

Asserts that the worst part was waiting for surgery and imagining that the cancer was a monster. growing inside of him.

I mean the worst thing for me was the four days between finding out that I had testicular cancer and the operation. The thing that I personally found the worst, and other people might find it different, was the fact that there was something growing inside of me that wasn't part of me. That was the worst thing for me. It was the image I had of this horrible monster thing, sort of like out of a 1950s Boris Karloff horror movie, this spawned monster thing growing inside of me, slowly eating away at me. It was 4 days, they was the most horrendous 4 days in my life but once the, once the tumour was removed and once I started on the chemotherapy I felt better because I knew that it was over. Look the success rates in testicular are in excess of 90%, in excess of 90% means that it is totally curable, that's if you get it treated.

Says that the Internet is a brilliant way of finding information.

We have one very big advantage with testicular cancer or with any form of cancer or with anything that is available now and that is called the World Wide Web. Now I use Yahoo, that isn't an advert for Yahoo, that's the way that I find it's best. You go into Yahoo, and you type in testicular cancer, and I guarantee you that for the next two weeks you'll be looking at every site that is different. You have people's experiences, you have drug information, you'll be able to read papers that are published on the web by some of the most eminent, eminent doctors that are around. There is no excuse these days, if you haven't got a computer go down to an Internet cafe, there is no excuse whatsoever for not finding out about testicular cancer or all the other things. I mean type in Carboplatin on the web, it will tell you about the chemotherapy that I had. Type in Virormone, which is the hormone that I inject myself with, it will tell you about that. The information technology break through of having the Internet available is just unreal. You know we're very lucky because we're at the dawn of something that is quite remarkable with the Internet. 

It's all, it's all access, it's all getting, having information at your fingertips. You know to go out and start going to a library and borrowing books or all these different sorts of things require a hell of a lot of effort. It's now literally, was it “two clicks away”, is that what Microsoft say? “Two clicks away”, so that's, it is there, a web site is there. A web site is the most brilliant idea for spreading information.

Explains how he would feel if he were not having hormone replacement therapy.

I know that if I don't have the hormone or I didn't have the hormone injections at the beginning, I would have the hot flushes, I would be irritable, I would be extremely fatigued. I say fatigued, not tired - it affects your whole body. When you're tired you yawn and your brain doesn't function properly. This was more than that, this was aching in all my limbs, and this was pain in my back and my groin, total fatigue, inability to concentrate on anything more than about 10-15 seconds in duration. So my body was lacking something.

Explains that he injects himself with Virormone and that HRT is most effective for men who have lost both testicles.

I've tried all the different sorts of HRT and for various reasons I've found that one thing doesn't agree with me, or the other thing doesn't work, and I now have a self injectable cannula into my tummy. And every day or so I give myself a little push on a syringe which gives me a hormone cocktail. I get on all right with that; I do it myself, so that's fine. 

So now I self-administer myself with a cocktail of drug called Virormoneâ. Virormoneâ is a testosterone compound with other things in it, mixed in, and I have a cannula which is like a small blood sampling kit that I put into my tummy wall. I deal with it myself, it is very easy, it is painless. Once you've done it, once you've overcome the hurdle of the very first time it is literally painless. You attach a syringe to it and you give it a squeeze and that way you're getting the amount of testosterone that you need without having massive overdoses of testosterone.

All I can say is, examine every single option that you are given because you will eventually find what is right for you, and once you find what is right for you, you will be stunned because the change in your life, of getting HRT, is nothing less than spectacular. You will go, within 2 or 3 days you will go from being a tired bear that just wants to hibernate and sleep all day, to someone that has got their vitality back, has got their energy back, that is a nice type of human being to be around.  

Explains why he couldn't take hormone tablets and why patches were a 'waste of time'.

Unfortunately for me the tablets made me violently sick. This happens in quite a few cases and I found that I couldn't take the tablets. So the next stage would be patches, these are Andropatches that go on your skin. I don't wish to criticise a drug, but I found that when I was having my blood tests, and they were testing my testosterone levels in my blood whenever I was using the patches, even with two patches which is double the dose, I found that my testosterone readings were below the minimum that could be recorded by the machines that measure the amount of hormone. Also there is a very large problem with regard to the testosterone patches. I have very, very hairy skin as you can see, you have to have totally smooth skin for the patches; patches will not adhere to hair, so you're then using things like the adhesive sticky tape to hold the patches down. The patches aren't effective, I'm not saying that they won't work for everybody but I found them an absolute waste of time and then I was beginning to suffer the HRT symptoms, I wasn't getting enough hormones. 

Explains why he couldn't tolerate some forms of hormone replacement therapy.

The pellets are meant to last 3 to 4 months, [but] after about 3 to 4 weeks I found that I was getting an infection under the skin, and my body was actually rejecting the pellets. My antibodies were doing a brilliant job of rejecting the pellets that were placed in my thigh, the pellets would be literally pushed to the surface by some chemical means that I'm not aware of and they would burst the stitches or the scar and come out in an infected mess. So I then had a wound infection for about 2 to 3 weeks afterwards. After 3 or 4 months of that it was obvious that the pellets were not working for me, so we went onto the final 2 types of things that were available. One is an injection of a very, very slow dissolving compound which is, it's very oily and thick based and that is injected again into my thigh....

It was done over 10 to 12 minutes; again they have to give you a local anaesthetic and it is inserted, I mean a needle like this I have never seen, the needle, no joke, is about that long, that they push into your thigh and then they inject this oily goo into the area under the muscle. I found the same things as with the pellets, after a time the oily stuff would come to the surface and again I would have a wound infection.

Describes a side effect of hormone replacement therapy and suggests that it is dangerous to take...

Now I was, I found that at the beginning I was having injections of this Virormone into my thigh, once every 3 days, the whole vial which is 2mls, which is a hell of a lot. And I was actually overdosing on testosterone. Now initially some of the guys might think, oh brilliant, you know overdosing on testosterone you'll be, you'll be running wild. It doesn't work that way guys, unfortunately it really doesn't. You develop something called polycythaemia. Polycythaemia is where your red cells are affected by too much testosterone, they become irregular, mutated and you start to feel really ill. Now when I say ill I mean you get light headedness, you feel as if you want to be sick, you get dizzy, you get tired, so although you're thinking your whole body is being bathed in testosterone you get too much and it gets nasty. The only way that they treat polycythaemia is, because polycythaemia is very similar to leukaemia in the way that it works on the cells, but polycythaemia works on the red cells, is that they use a chemotherapy drug called hydroxyurea which is very nasty. You don't want to get involved with hydroxyurea and you don't, really don't want to want to OD [overdose] on testosterone. If you're self-injecting then you need to be very careful that you don't give yourself too much. 

Explains that sex is good, even if both testicles have been removed, with the help of HRT, and a loving partner.

Speaking totally from personal experience there is no discernible difference in my sex life from before I had testicular cancer to after I had testicular cancer. There are, of course there are emotional changes, there are things that you find that affect you. You will find that the first 2 or 3 times that you have sex with a loving partner you will be very, very emotional because it's almost as a relief that things happen, that things work. Nothing stops, you know you haven't lost a limb, it still works, it works on 2 levels. You have to chemically get it to work by making sure that you have the HRT but more important than the chemically get it to work you have to psychologically get it work as well. Now I'm sure that everybody knows that if you totally screwed up, you've had a hard day, you're tense and whatever, even men in the prime of their health sometimes it don't work. That is not because of the testicular cancer, that is because you are totally stressed out. If you have a loving partner and someone that cares and understands there is no reason whatsoever that you cannot have a full and fulfilling sex life. 

If you sit there for an hour before and say, "It's not going to work, I'm going to be a failure, I'm going to be a flop in bed," and all these things, it won't work. But remember one thing, when you get into bed or when you start to make love for the first or second or third time, with somebody and that person knows that you've had testicular cancer they are going to be so caring, they're going to be so wanting, they're going to want it to work for you so badly that it will work, I guarantee you. It might not work the first time, it might not work the second time but there is no clinical reason whatsoever why it shouldn't work and the caring, loving person that you're lying next to will want it to work for you so much that they will work with you to make sure that everything is as good if not better than it was before.

Explains that he felt a tremendous blow when his first testicle was removed.

With regard to my story, going back to my story with the removal of one testicle you know it was a tremendous blow. I can understand now why women get so really uptight about cancer that affects, goes direct to your sexuality. If I'd have had a tumour in my lung or in my leg or another part of my body I don't think it would've affected me as much as something that goes to the core of my sexuality. I mean you hear on television some of the expressions about men brimming with testosterone or whatever and it comes as a shock. 

Describes how he felt when he lost both testicles.

So how did the idea that you were now losing two affect you?

Through no fault of anybody else's, and I think it's because of how I felt myself, I felt almost as if I'd been emasculated, mutated. I didn't blame anybody because it wasn't as if it was a mistake by somebody, this was something that had happened to me and I found that I was in the position where I didn't know whether I could ever have sex again, I didn't know what the future held for me, would it spread, and a whole manner of things. And there wasn't much in the way of help for people that had both testicles removed. I then after about a week or so they then started giving me injections of a hormone that they explained to me that I needed to keep my body going.

They've removed a part of my body, but the rest of my body is whole, the rest of my body works very well, and there is no reason whatsoever for man to feel any less of a man. And that is very, very, important; don't ever feel any less of yourself because a small part of your body has been removed.

Recalls his fear of jokes in the office.

Thinking back to when you first discovered you had testicular cancer, did you feel you could talk to other people and tell work about it?

No, not at all. I was frightened of the jokes; I really was frightened of the jokes. I was in an environment where it was very high-powered environment and I was, I was concerned and frightened about what was going to be said to me about me, behind my back and all these things. So I kept it to myself, I shared it with the people around me, I shared it with my best friend who is still my best friend and him and his wife and his kids are what I would say is my new family, they are remarkable people. And there is nothing that I can't tell my friend.