Interview 106

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.

More about me...

In the summer of 1990 he noticed a lump on his testicle. He wasn’t concerned at first as he thought he had just been bruised whilst play fighting with his dog. In 1991 he had an episode of kidney stones, whilst he was at the hospital he mentioned that he had found a lump on his testicle and would like to get it checked out. They scanned the lump. It wasn’t until the nurse said “You’ll have to talk to your Doctor” that he knew there was a serious problem. He was shocked to be diagnosed with testicular cancer and felt as though it was something that happened to others but he had never expected it to happen to him. 

 

In 1991, he underwent surgery to remove his testicle. He felt frightened as he was not sure what was actually involved in the surgery. It was sore and painful for a while after. He felt it was a tremendous blow. He explained that if the tumour had been anywhere else it probably wouldn’t have affected him as much as something that went to the core of his sexuality. He had to have chemotherapy as he had left it some time before seeing his GP; there were some cancerous cells in his blood as opposed to just the testicle. He started chemotherapy 2 to 3 weeks after his first surgery. He found that there was very little in the way of hormone replacement therapy (HRT) for men back then. He was first treated with Carboplatin which initially had no side effects. Unfortunately, as a result of continuous treatment he developed progressive kidney disease and Type 2 diabetes. 

 

About 18 months after his surgery, he started having problems with his other testicle. He was experiencing a lot of pain and they had to operate. When he came around from his anaesthetic the nurse informed him that his remaining testicle was beyond salvage. He did not understand. He found himself in the position of being 40 with no testicles. He explained that it affected his sense of masculinity, he felt emasculated and mutilated. He did not know whether he would be able to have sex again or how the testicles were involved in the production of male hormones. He was not sure what the future held for him and found there was very little in the way of support for men who had both testicles removed. He soon realised that there was no reason to feel any less of a man as there was no apparent difference between his sex life before and after testicular cancer. He explained that he was not affected by the thought of being infertile as he had already had children. 

 

After his second operation, he tried various HRT’s but always had issues with his treatments. He found the tablets, patches, pellets and a slow dissolving compound injection to be ineffective and caused intolerable side effects. However, he would feel unwell and fatigued without treatment. He realised he needed both female and male HRT. He started taking a progesterone treatment, and currently self-administers a testosterone compound injection once every 3 days or so via a cannula. He believes it is important to examine every option, as he feels that when you find the right treatment you notice a positive change in your life and ‘go from being the tired bear that wants to sleep and hibernate all day to someone who’s got their energy and vitality back’.

 

From his experiences with some friends he didn’t feel that he could talk to people or his work about what had happened and was frightened of the jokes that would be made or what would be said behind his back. He was hurt by the jokes and only felt comfortable telling close friends and family. He also found support with a Jewish Cancer Centre, that offered one-to-one counselling and complementary therapies such as aromatherapy which would provide him with comfort. He explains how he feels different and though he has changed after having cancer. He does not feel as though he is any worse off or any better from his experience. He believes the importance of self-examination should be made clear and that men should seek help sooner rather than later.
 

In the summer of 1990 he noticed a lump on his testicle. He wasn’t concerned at first as he thought he had just been bruised whilst play fighting with his dog. In 1991 he had an episode of kidney stones, whilst he was at the hospital he mentioned that he had found a lump on his testicle and would like to get it checked out. They scanned the lump. It wasn’t until the nurse said “You’ll have to talk to your Doctor” that he knew there was a serious problem. He was shocked to be diagnosed with testicular cancer and felt as though it was something that happened to others but he had never expected it to happen to him. 

 

In 1991, he underwent surgery to remove his testicle. He felt frightened as he was not sure what was actually involved in the surgery. It was sore and painful for a while after. He felt it was a tremendous blow. He explained that if the tumour had been anywhere else it probably wouldn’t have affected him as much as something that went to the core of his sexuality. He had to have chemotherapy as he had left it some time before seeing his GP; there were some cancerous cells in his blood as opposed to just the testicle. He started chemotherapy 2 to 3 weeks after his first surgery. He found that there was very little in the way of hormone replacement therapy (HRT) for men back then. He was first treated with Carboplatin which initially had no side effects. Unfortunately, as a result of continuous treatment he developed progressive kidney disease and Type 2 diabetes. 

 

About 18 months after his surgery, he started having problems with his other testicle. He was experiencing a lot of pain and they had to operate. When he came around from his anaesthetic the nurse informed him that his remaining testicle was beyond salvage. He did not understand. He found himself in the position of being 40 with no testicles. He explained that it affected his sense of masculinity, he felt emasculated and mutilated. He did not know whether he would be able to have sex again or how the testicles were involved in the production of male hormones. He was not sure what the future held for him and found there was very little in the way of support for men who had both testicles removed. He soon realised that there was no reason to feel any less of a man as there was no apparent difference between his sex life before and after testicular cancer. He explained that he was not affected by the thought of being infertile as he had already had children. 

 

After his second operation, he tried various HRT’s but always had issues with his treatments. He found the tablets, patches, pellets and a slow dissolving compound injection to be ineffective and caused intolerable side effects. However, he would feel unwell and fatigued without treatment. He realised he needed both female and male HRT. He started taking a progesterone treatment, and currently self-administers a testosterone compound injection once every 3 days or so via a cannula. He believes it is important to examine every option, as he feels that when you find the right treatment you notice a positive change in your life and ‘go from being the tired bear that wants to sleep and hibernate all day to someone who’s got their energy and vitality back’.

 

From his experiences with some friends he didn’t feel that he could talk to people or his work about what had happened and was frightened of the jokes that would be made or what would be said behind his back. He was hurt by the jokes and only felt comfortable telling close friends and family. He also found support with a Jewish Cancer Centre, that offered one-to-one counselling and complementary therapies such as aromatherapy which would provide him with comfort. He explains how he feels different and though he has changed after having cancer. He does not feel as though he is any worse off or any better from his experience. He believes the importance of self-examination should be made clear and that men should seek help sooner rather than later.

After having his 2nd testicle removed following testicular cancer he took testosterone replacement therapy; when he missed an injection he experienced symptoms of a low testosterone level.

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. And then I missed a hormone injection here and there and I began to feel and understand why it was desperate, and I use the word desperate, and vitally important for me to have these hormone injections. People say that the male menopause doesn’t exist; I will tell you categorically that it does. 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, is that 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, this was pains 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 and they discovered, I helped out with some research at a hospital in [county] and they discovered that not only did I need testosterone, male HRT, but I also needed some female hormone as well, which nobody knew or nobody realised. So I started having tablets of a drug called Provera, which I understand is progesterone, or progesterone, or however one pronounces it, and I needed that in addition to my male HRT.

 

Is that produced in the testes?

 

That's produced in the testes as well. When they removed both my testicles for testicular cancer they don’t just remove the testicles, they remove the sac that the testicles are in inside the scrotum, and they also remove tissue up inside your groin and some nodes there which control or produce a certain type of hormone. So it isn't just like you lose an arm and they cut the arm off and that's it, there are lots of other implications as well. 

 

After having his 2nd testicle removed after a cancer diagnosis, he tried lots of different types of testosterone replacement until he found one that worked for him without unwanted side effects.

Okay, the simplest type of HRT, if you can tolerate it, are tablets. You take a certain number of tablets every day, they will last you for around 24 to 30 hours and you have to keep on taking them so it is vital you take the tablets.

 

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 Andronone patches 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, the 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 that I wasn't getting enough hormone.

 

We then move on to basically 3 different types of things. There are the pellets that are injected under the skin. Now because the chemotherapy damaged the way that my liver and kidneys produce the enzymes, we found that the pellets were introduced during a minor procedure under a local anaesthetic and the pellets were put into my thigh, deep into my thigh, then the incision was stitched. After about 3 to 4 weeks the pellets lasted, are meant to last 3 to 4 months, after about 3 to 4 weeks I found that I was getting an infection under the skin and the pellets were being, 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.

 

Because it has to be done over about 10 to 12 minutes - I'm just going to stop for one second, but I'll keep running if you want me to go. Okay go on, off you go - because 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 with the pellets, after a time the oily stuff would come to the surface and again I would have a wound infection.

 

So now I self-administer myself with a cocktail of drug called Virormone. Virormone 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.

 

I'll come to what happens with the overdoses in a second. I find that because I've