Interview 135

Age at interview: 50

Age at diagnosis: 44

Brief Outline: Testicular cancer (seminoma) diagnosed in 1996, with secondary tumours in the abdomen. Orchidectomy, followed by 4 months of chemotherapy (each cycle over three weeks with one week in hospital, then 2 weeks at home), and 4 weeks (20 treatments) of radiotherapy.

Background: Contract Manager; married, 1 adult child.

More about me...

He first realised something was wrong when he started suffering from persistent backache and made an appointment with his GP. He went through a long period of misdiagnosis, where he was treated for a trapped nerve. At this point he had not experienced any other symptoms other than backache. He then started to suffer from constipation and found that his back pain was getting progressively worse. His GP sent him for a barium enema, which came back clear. He continued to go to his GP and felt that he was getting nowhere. He later noticed that his testicle became severely enlarged and made an appointment with a locum GP who thought the swelling was likely to be a varicocele and referred him for a scan. After having the scan he and his wife had an intuition that it might be testicular cancer. He was extremely concerned and felt that he could not wait for his results and spoke to his GP. His GP arranged for the consultant to phone him as soon as possible. His consultant then diagnosed him with testicular cancer. He felt like he was in a dream and that he had no control over the situation. He explained that everything just starts to happen from the moment of diagnosis and that you tend to accept whatever comes your way. 

 

He underwent an orchidectomy and experienced a little soreness temporarily at the surgical site. He found that the surgery barely affected him. He would have liked to receive more information from hospital staff and found them quiet secretive when he requested further information. He explained that they had not discussed issues of fertility with him but that fertility had not been a major concern. He said that he had also never received information about a prosthesis but feels that having one testicle is barely noticeable. He then underwent 4 months of chemotherapy (each cycle over three weeks with one week in hospital, then 2 weeks at home). He found that chemotherapy left him feeling fatigued and caused his hair to fall out. He explained that he also suffered from what he considered to be more severe symptoms' temporary violent shakes chemotherapy infusions, thrush in his mouth and skin rashes. He explained that chemotherapy was an unpleasant experience but that all the side effects were manageable and stopped when the treatment stopped. He said that you just have to get on with what comes your way. He preferred staying in hospital during treatment as he felt safe there. He explained that when he was at home he was rather inactive due to his fatigue and he had very little energy to do things. He found the hospital and Macmillan nurses a great comfort during his treatment. He was later recommended a course of radiotherapy as the cancer had shrunk but not disappeared. He decided to go ahead with radiotherapy as he wanted to be sure the cancer had gone. He experienced fatigue and heart burn but carried on as normal. He explained that he had not found it a very invasive procedure. 

 

He and his wife had started contacting support groups after receiving his diagnosis. They found one group in particular was extremely helpful and felt reassured when a member of the group came to speak to them. He remained involved with that group. He appreciated being able to talk about his experience with others, and swap stories and information. He also found the Testicular Resource Centre website a useful source of information as it was set up by people who have experienced testicular cancer. He explained that his wife was an invaluable support throughout the whole experience and supported him with everyday practicalities. He was unable to work for about 6 months but eventually eased back into work after treatment. He found that his work colleagues were incredibly supportive. He explained that some of his colleagues had visited him whilst he was in hospital. 

 

He doesn’t feel that this experience changed his life and feels that he has managed to get back to normal. However, he still worries that his cancer might come back even though he knows that it is most unlikely. He wanted to be open with everyone but found that nobody willingly talked about it with him. He decided to start up a website to try and create a platform for people who have been through similar experiences and are looking for, or want to share information and experiences. He believes it is useful to hear from others who have been through similar experiences as doctors and nurses tend to provide standard answers. He thinks it is important to raise awareness. His advice to others would be to see your GP as soon as possible. 

 

 

He knows that his testicular cancer is very unlikely to come back but he can’t get out of his...

So how did that all affect your life in general?

 

Well I think a lot, you hear a lot of stories and how it affects you and it changes your life, but I think in my case I don't think it has. I think, you know, I don't think it's actually, I think until I actually finish and get discharged, I still think that there's a tendency that it might come back, and I think until I actually discharge myself I'm still going to think along those lines. I don't think I can, I can't get it out of my mind that it might come back.

 

Does that prey on your mind a lot?

 

It does yeah. And I know from all the reading and research that I've done that it shouldn't. I know that I'm sort of cured, basically, and I know that the chances of it coming back are minuscule. But I suppose I'm just, I've just always got that nagging feeling that it might.

 

Six years after having testicular cancer he is unaware of any changes in his outlook as a result...

And has all this sort of affected you sort of long term, emotionally and psychologically do you think?

 

I don't think it has, no.

 

No.

 

I think it should have done but, you know, they say that it changes you and gives you a different look on life, but at the moment I don't think it's changed me at all, I think I'm still the same as I was before.