Interview 147

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.

More about me...

He was 29 years of age and engaged to be married. Looking back, he felt uncomfortable wearing tight trousers for a few months, but put this down to strain from exercising. One day he had severe pain in his left testicle and surrounding area, and went to his GP. His GP found a lump and told him that he suspected testicular cancer, and arranged for him to see a consultant the following morning. The consultant operated on him that afternoon to remove his left testicle, and he was diagnosed with testicular cancer. He felt shock and disbelief as events had proceeded quickly, and felt very uncomfortable following the day surgery. A ‘wait and see’ approach was adopted and his blood was tested weekly. After four weeks, he was distressed when a nurse let slip that his blood tests were generating concerning results, and this was confirmed by his consultant. Further investigation of the removed testicle showed that the cancer had spread up the spermatic cord – he wondered why this was only investigated four weeks later, and not during the initial analysis that confirmed his diagnosis. A further operation was conducted to remove more of the spermatic cord, and he was informed that he would need chemotherapy, having four courses in total. Before starting the first course, he had sperm frozen and stored as he wanted to start a family in the future.

 

When his hair began to fall out he had his head shaved. At the start of the chemotherapy he did not feel too unwell, but increasingly experienced sickness and fatigue. He did a lot of research on the internet about his cancer and treatment (and found Lance Armstrong’s website helpful). He found that brushing his teeth and using mouthwash after every drink or meal prevented him from getting mouth ulcers. He found he was only able to eat soft foods, and lost three stone in weight. What he did find upsetting was seeing the reactions of his family and friends when they saw him, and his wife asked people to focus on usual topics of conversation, rather than focus on his illness. By the final course of chemotherapy he experienced low mood, and found the uncertainty of whether treatment would work difficult to deal with. He had seven months off work but received full pay for six months. He was keen to return to work, and also made an effort to go out during his treatment if he was feeling well enough. At the time of interview it had been four years since his treatment. He had tinnitus for two months following chemotherapy but this passed. He still has numbness in his fingers and some pain where his testicle was removed, but has received help from a psychologist in rethinking his response to pain. He has annual blood tests to see whether the cancer has recurred, and he finds the possibility that it could come back causes him to worry at times. He was very happy with the care that he received throughout his illness, but does feel that the NHS should devote more attention and resources to the psychological impact of cancer on patients. 

 

He is a member of a patients’ council which raises issues with local hospitals and politicians. He feels that patients being treated for cancer should be given a booklet with commonly asked questions and answers, based on questions that previous patients would have liked to know (such as side effects of chemotherapy and an idea of chances of success of treatment). He also encourages patients to ask as many questions as they want, and not to feel as if they are wasting the doctor’s time. He feels fortunate that he had pain, which he was told does not happen in most cases of testicular cancer, as it made him go to his GP. He is now exercising and keeping fit, and avoids eating dairy and yeast products. He started taking vitamins after his treatment but has reduced the amount he takes now. He visited a Chinese medicine practitioner who recommended a detox diet to try and remove toxins from chemotherapy from his body. He is pleased that surgery and treatment has not affected his ability to have sex. 

 

During chemotherapy, he found taking one day at a time a useful strategy, and appreciated the days that he felt well. He says his attitude to life has changed, as he believed he would only become ill when he was much older. He feels that he is now more open in talking to others, and really appreciates the relationships that he has with family and friends. 

 

He found that psychological counselling helped him manage his pain caused by nerve damage from surgery for testicular cancer.

Yeah you get, I was offered psychological counselling for, not necessarily the worry of it all, because I had two surgeries on the same area it has left me with an aggravation of that area which is caused by the nerves that they cut in that area, have not died off. It's very similar to somebody maybe who has, like, a limb removed, it's like a phantom limb syndrome, that the nerves that were going to that limb have stayed active, where for me it's the nerves that were cut during the surgery have not died off and have actually stayed active, and I do get a lot of aggravation that I feel all of the time basically, which is called a neuroma. Now I was referred to a psychologist to help me deal with that, it's basically pain management. Now what that psychologist helps you do is to help you understand the thought processes involved in how your body experiences pain. Because if you’re feeling like I am all the time in minor aggravation in an area, your subconscious is always focussed on that aggravation that you're feeling, and it's like somebody saying to you, "I'm about to give you an injection, you'll feel some, a small amount of discomfort." Instantly you will feel that discomfort 20 times more severely than if they'd just given you the injection and not told you. It's very, very similar, and the psychologist I spoke to basically she helped me understand and re-learn almost how to experience pain and to be able to try and shut pain out in many ways.

 

So that was helpful?

 

I found it quite helpful yeah.

 

Five years after having platinum based chemotherapy for testicular cancer he still experiences a numbness in his fingers during cold weather that he describes as being like pins and needles.

But I do have a numbness in my fingers, which I'm going to be left with possibly for forever. Again, it's not subsided to a great, I mean it has subsided slightly but in, particularly in the winter, in the cold weather the ends of my fingers will almost go blue, it's just damage caused by a drug called cisplatin, which is part of the chemotherapy regimen that is given to you, which damages the nerves in your body. Now it was just, it's one of the side effects that you have but it's just basically pins and needles in your fingers during cold weather, which is manageable.

He was invited to bank some sperm before having chemotherapy for his testicular cancer; doing it at the clinic didn't appeal to him so he did it at home and rushed the specimen to hospital by car.

Before I had the chemotherapy I had the surgery, well I had two lots of surgery, and then after I had to have the second surgery they said I'm going to have to have chemotherapy, which meant sperm banking because there's a high percentage of men that don't get a high sperm count back after having chemotherapy. Again, because we were interested at having a family at some point in the near future, my wife and I agreed that sperm banking was the way forward. So the local specialist clinic that is involved in that is about a 25 minute drive from my home. Now the very limit to what they will let you produce the specimen, without going into too much detail, produce the specimen and bring it into them, is 20 minutes.

 

Right.

 

Now I didn't really want to be sitting down in a dingy dark room in this clinic and try and produce specimens there because it just, the thought of that didn't really appeal to me too much. So we went for, I persuaded them to accept sort of the home option. But I can remember jumping into the car with, now, my wife and flying down the motorway and I almost thought to myself well, what would happen if the police stopped me? And I would turn, he turns round, "What's this sir, are you having a baby?" And a possible answer would be, "Well possibly, you know, maybe at some point in the future," and trying to go into explanations would've been quite humorous. 

After surviving testicular cancer he feels less inhibited about talking openly about things that matter with close family and friends.

I think from a male point of view it almost makes you a better person because I think men in many respects don't tend to talk to other people openly, other men, other whoever, and discussion can be a little bit sort of, I don't know, just talk about the weather or the sport or whatever, and not really talk to people, whereas after an illness that sort of thing becomes less important and proper friendships and relationships with your close family and friends become more important in your life. You're less afraid to open up and talk about things.

Since having testicular cancer 5 years ago he has cut out dairy products and takes vitamin and mineral supplements recommended by a Chinese medicine practitioner.

From looking again on the internet, what some internet sites are suggesting is that the food chain nowadays and the processed food, there are 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. 

 

Now from that, and from generally trying to keep as fit as possible since I was ill, I don't drink milk, I try and avoid cheeses and stuff like that which, because that sort of produce is more farmed with those sort of drugs. In other words they're feeding the cattle lots of female hormones to beef them up to increase the milk supply and stuff like that, which is why I try and avoid milk and cheeses and stuff like that. But again that's only a bit of information that I've got from the website and it's not proven at all. But again if by doing that I might be protecting myself then I think it's very worthwhile doing. Again it's certainly, it makes you look at life very closely after having cancer. I try to weigh up everything you're eating, I try and take as many vitamins and stuff like that. And initially, definitely after the chemotherapy finished and I was starting to feel well again for the first time, I went over the top, I was taking so many vitamins I must've been almost rattling at times, and definitely in recent years I've calmed down a lot now. But again it's because, it's not really worry, to say that I was worrying it sounds terrible, you know, it's hypochondriac almost, but no, it just opens your eyes to the possibility that you might have an illness that you're not going to recover from, and it concentrates you on doing everything you can to make sure that you're going to conquer that illness. So I looked into all sorts of vitamin and mineral supplements and things that were supposed to help and, you know, if you're not in you can't win as it were, you know, if you're not sort of on this regime then it's definitely not going to help you. So I mean I've tried most things. Whether it has helped me in being four years down the line and still clear of cancer or not I suppose I'll never know but…

 

Have you tried any other sort of complementary therapies? I mean you've changed your diet a little bit

 

Yeah.

 

And you’re taking extra vitamin supplements, have you ever tried anything else in the line of complementary therapies?

 

I went to a, he wasn't a Chinese medical practitioner but he specialised in nutritional supplements, much along the same lines as a Chinese medical practitioner would do in terms of herbs and things like that. And he recommended lots of different things to me that, you know, can be helpful, and I did follow that for I would say about a year and a half. I didn't take any milk whatsoever and stuff, soya milk for everything. The different mineral supplements that he recommended I stayed on for about a year and a half or so, and again I don't, I'll never know whether that's why I'm clear of cancer now but certainly it did no harm. It was basically a very, very strong detox diet almost, followed up by heavy vitamin and mineral supplements.

He still has annual blood tests to follow-up on his testicular cancer, and thinks it would be good to have someone to talk to when worried about the results of his tests.

But even four years down the line, almost four years since I finished chemotherapy, you still worry. I'm having annual blood tests now, and from about a week before you have your blood test I find myself having difficulty sleeping and feeling quite anxious and uptight, and that doesn't go away until maybe a couple of weeks afterwards. But it's just basically because your subconscious, no matter how intelligent a person you are, you can't switch off your subconscious from worrying about something. It's a very, very difficult aspect to deal with. And I think in a certain way doctors and nurses could improve on that in terms of caring for cancer patients, it is the worry side of things. I think in the NHS our doctors and nurses are second to none in terms of the training that they've been given in treating people, but the psychological aspect of the illness I think could be dealt with a little bit better. 

 

Especially under, in a system that's under such a great amount of pressure, you know, you're going into the cancer ward and you're, there's a, on the days that you're going in for, like, just a check-up even, there are 15-20 other people all sitting there in chairs giving blood for their marker levels to be tested, and you're waiting for an hour, you're going in and giving blood and you're way home again and you're worrying about what the blood tests are going to show. There's nobody actually to sit down and speak to and ask you, well how are things, and that would really help, but that is almost an impossibility with the constraints that are on the NHS at the minute, you know, to have that facility.