Support and counselling after testicular cancer

Some men with testicular cancer not only have to cope with physical problems associated with treatment, but also with psychological distress and lack of confidence due to worries about health, fertility and body image. They may also have problems with relationships and concerns about work and financial matters, and thus need support.

Macmillan Cancer Support provides information on all aspects of cancer and its treatment, and on the practical and emotional problems of living with testicular cancer. Other organisations, such as Cancer Research UK, can also help (see ‘Resources’ section), and many hospitals have their own emotional support services.

Counselling is not recommended for men with testicular cancer as a matter of course. Indeed, one man said that he thought it might do more harm than good. However, some people find it very helpful to talk to someone who is especially trained to listen, and two men said that they wished they had known that counsellors were available in the hospital.

Explains why he is not in favour of counselling.

Age at interview 53

Gender Male

Age at diagnosis 53

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Did you look for support from anybody else?

Not at that stage no. Only my doctor, you know, but even then it was just an ordinary consultation with the doctor. No I didn’t, I don’t, I will be honest with you, I’m not into this counselling business. I think it does more harm than good half the time, it makes people feel more aware of their problems when people, they actually know what the problems are, you know and if you’ve got it you’ve got it, I mean what the hell can you do about it? Why, why seek to speak to some, some people may be different to me, I mean I don’t know – that’s not my way of doing things.

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Says that he wished he had had counselling while in hospital but he did not know that it was…

Age at interview 35

Gender Male

Age at diagnosis 30

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I’m probably not the best talker about emotional things anyway er but one thing that wouldve been useful would have been somebody to be able to talk to at the time. And personally I found that side of it lacking. Er as it turned out counsellors were available but perhaps not publicised enough. So it was only after I’d had the all clear that I realised that there was you know any sort of counselling that was available, I sort of discovered it more by accident than anything else. Having said that you know that’s not any criticism of the hospital because they were absolutely fantastic with the care that they showed. I just think that perhaps if the counsellors made themselves available while you’re in the hospital, okay you might decide not to use them but I think it would be something that would help you get through it. And certainly after the event I had a lot going on outside of being ill as well at the same time and you know it became a very stressful.

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One man suggested that psychosocial counselling would be helpful after medical treatment, to help those who fear that the cancer might return, and to help those who have problems with family relationships.

Suggests that long term relationships may suffer as the result of cancer.

Age at interview 55

Gender Male

Age at diagnosis 40

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Arthur Frank’ You know my wife was unqualified in her support and she was always there. I think the thing that really is perhaps more worth talking about is the longer-term effect on a relationship.

‘the problem is really after cancer, not during cancer. It’s really putting together a kind of equal sharing relationship after this period when one spouse or partner has been so completely dependent on the other. Cancer is highly corrosive to relationships and you know our relationship will never be the same.

But cancer does, it does have this long-term effect and I think, I think it’s important for couples to realise that they’re going to have to do very significant ongoing re-negotiation of relationships afterwards.

Getting back to relationships I think that the real problem for my wife and me was dealing with these threats of recurrence. Because people just burn out on cancer, I mean I was burnt out with it, my wife was as burnt out with it and by the time I had this serious fear of recurrence, the most serious one, they were all serious but the most serious one we had a little daughter, we had an 11 month old daughter. My wife had had a very difficult pregnancy, she was still not back to you know her usual physical shape, we had this wonderful active baby to take care of, which was exhausting for any new parents, and we just really couldn’t handle this you know it was just, it just pushed us over the edge that we might have to go back into a world of cancer again. And I think that was really where our problem was and fortunately we didn’t have to go back into a world of cancer and we just you know we picked up again and went on. But I guess the message that’s important about all this is as I said it’s often when cancer is resolved medically, when you’re in remission that I think the real relationship issues begin, and that the people may need psycho-social counselling, whatever help.

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In the community, GPs, district nurses, Macmillan and Marie Curie nurses, local ministers, and many others can also offer support.

Some people find support groups  helpful too. One man, who now helps to run a testicular cancer support group, wishes that a support group had been available when he was ill. He said that even now he finds the group very therapeutic because other members of the group put things into perspective, and make him realise that he was not the only person worried about a recurrence.

Says that the support group helps to put his fear that the cancer will return into perspective.

Age at interview 36

Gender Male

Age at diagnosis 29

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And the one thing that I’ve got from dealing with the group is that it’s very therapeutic, you know it puts things into perspective. You see things that, you know the fears that you’ve got that it will return or whatever, you suddenly realise that you’re not the only one feeling like that, all men’ you know. I think anybody that’s had cancer their main fear is that it will return and you was lucky the first time but will you be lucky the second you know. And it’s just, just confirmation that you’re not the only one who thinks like you are and you’re not crazy you know.

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One man said that members of his support group, a group for people with various forms of cancer, used to meet once a month, and give advice to each other about difficulties they had encountered. Some self-help groups also offer complementary treatments, advice on diet or exercise, and invite expert speakers to give talks.

Support groups may run a support service over the telephone. One man said that he found it really helpful to talk to someone who had been through a similar experience. However, another man, who had lost both testicles, had a bad experience when talking to someone over the telephone, because he said that the person he spoke to trivialised his experience.

Recalls that his telephone calls to a testicular cancer support group helped him to stop worrying.

Age at interview 28

Gender Male

Age at diagnosis 27

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But also Imperial Cancer Research gave me a help-line number for a young man who runs a testicular cancer help-line, somewhere up in, up north. And I phoned him up one evening and had a chat with him for about an hour and a half and he was very helpful because hes been through it himself. It’s different when you’re talking to a doctor and you say, “I’ve got this pain,” or “I’ve been through this,” they say, “I can understand,” but they don’t understand because they’ve not been through it. But when I spoke to this young man, exactly what I was saying he could relate to.

A couple of months after the operation as well, which men might need to know about, is I did find another little lump. Wasn’t sure what it was, thinking oh my God it’s , you know I’ve got another lump in the other one now. And I spoke to this young man on the testicular help line who’s been through it and he had exactly the same thing after his op, and his turned out to be a blood clot which he just took tablets for and it eventually went. Mine turned out to be what they call a varicocele which is where the vein has just got a little bit blocked, it’s like a varicose vein, like people get in their legs. But speaking to him, I was completely worried beforehand, thinking oh my God I’ve got another lump, having spoken to him he was saying what he had, nothing to worry about, it alleviated my concerns a lot. Yeah so it’s nice talking to someone who’s been there and knows what you’re going through, definitely.

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Some men described the voluntary work they do, visiting men with testicular cancer in hospital, offering support, writing newspaper articles, talking on the radio or TV, and visiting offices and schools to raise awareness about the symptoms of testicular cancer. One man said that his voluntary work helped him to feel better himself.

Describes the work done by his support group.

Age at interview 33

Gender Male

Age at diagnosis 26

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I’ve got 4 members on the group now, key members I would say that come every month and we meet up and they do sort of different roles within the group. We don’t just have guys coming to see us, we go to hospitals to see them. We go to schools to educate girls and boys, we talk to both the girls and the boys because I think it’s equally important that the girl finds the lump she drags him kicking and screaming and that works both ways if he finds a lump on her breast he drags her kicking and screaming. We go to colleagues; we have a display board that we take around businesses within this area and to health and fitness studios and we all work in a lot of different fields. So it’s been going since 1998, weve got a help line now, weve got a web page now that people can go and see and they can call us. Weve done TV and radio bits and it’s , it’s working. If we only help one person each year at least weve

Helped someone.

Weve helped somebody.

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Although some men found support groups very helpful, others said that they didn’t feel a need for counselling or for a support group, because they had received such good support from family, friends, and hospital staff.

Explains why he had no need for a support group or counselling.

Age at interview 38

Gender Male

Age at diagnosis 35

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Did you ever think of getting in contact with a support group?

Not really because I had so much support anyway. You know I was very lucky, you know I had people who were prepared to come and pick me up when I couldn’t drive. You know literally from ferrying me around, you know friends picking me up, taking me home after you know the uh, the operations and the treatment you know I had friends who would you know come and sit with me if I wasn’t feeling, you know if I was at home and wasn’t able to sort of go out and, and they were all more than happy to talk about it as well.

That’s good.

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Follow-up for testicular cancer

The aim of follow up care is to detect a relapse at a stage when further treatment has the best chance of being effective, to...