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 (see Macmillan Cancer Support). 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.
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.
Says that he wished he had had counselling while in hospital but he did not know that it was...
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.
'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.
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 (for contact details see 'Resources' section) 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.
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.
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.
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.
We've helped somebody.
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.
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.