Support groups for prostate cancer

Many men found that the help they received from support groups and charities was invaluable. Men reported that they and their wives received much needed information about prostate cancer, and that the support groups helped them come to terms with their disease and gave them a more positive outlook.

Explains how encouraged he is by meeting those who have had cancer for a number of years.

Age at interview 70

Gender Male

Age at diagnosis 67

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The other good thing about the support group is, and this heartened me, when you’re first told you think well how long have I got to go and what effect is it going to have on my life, I’ve still got things I want to do. So it’s quite heartening to meet people who have had it for 10 and 12 years, that is something that gives you encouragement and there are new treatments coming out which we discuss at the support group. Were going to start a newsletter shortly but any medical information we give will be vetted by our liaison consultant first, we would not dare put out any medical information without having it vetted first.

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Considers how beneficial groups are for relaying information.

Age at interview 55

Gender Male

Age at diagnosis 51

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And I think more has come to light through people sharing experiences, than what any information we ever got from urologists or oncologists in the hospital itself. They seem to lack the ability to impart any other information than what they deemed necessary for you and then giving you no options on that system. Now we know there are options and it’s made a big, big difference, certainly to me. The main benefit I’ve received has actually been referred down to a hospital in London where they have a totally different attitude to the problem, and encourage you to go along and hopefully get well again whereas locally they say ‘Well you know tough but that’s the end of the line. I come down here now quite regularly and even though some of the treatments I’ve had have not worked I still come away encouraged and that to me for anyone suffering from any form of cancer is a major benefit to anyone, it’s terrific.

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A few men described special centres that have been set up to provide information and emotional support to people with all forms of cancer. Some men explained how they themselves had helped others, and how they had set up new support groups for men with prostate cancer, However, while most men found the information provided by charities and support groups most useful, not all men wanted to belong to a support group. Some men considered that they had enough support from friends and family. Others feared that support group meetings might be depressing. Some men who had made contact with support groups had found them unhelpful for various reasons.

Concludes that he found the cancer groups supportive and very encouraging.

Age at interview 66

Gender Male

Age at diagnosis 66

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Because of this cancer centre various programmes are arranged, there was one I attended called a holistic therapy workshop, familiar stuff to me but the emphasis was on alternative, alternatives of the biomedical approach to things and that was very interesting and very helpful. And you found, I found plenty of emotional support from other folk there. I’d like to stress that because the people there, all of whom were suffering from cancer, way, way beyond what I’m suffering, were very genuine, as if they were no longer concerned with the things that normally preoccupies one, you know status, money etc. you were on to a very genuine level, and I must say I found that very encouraging and I also had strong support.

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Describes how he received calls from people wanting to know more about prostate cancer.

Age at interview 70

Gender Male

Age at diagnosis 66

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You were saying that you had telephone calls from all over the country?

Yes all over the country were people who contacted the Prostate Cancer Charity and they send them the list of patients who are willing to talk about their complaints and their treatments and what not and it’s surprising people all over the place. I think you can give a bit of reassurance to them, when you’ve been diagnosed quite a while and the person who’s phoning is newly diagnosed I think you can do a lot of good because it’s very traumatic, they don’t know who to turn to and these organisations like Cancerbackup are very, very good. The trained nurses who can talk to and advise them.

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Describes how he started a support group.

Age at interview 75

Gender Male

Age at diagnosis 68

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Our support group started up in April last year and we have all taken a very good interest in prostate cancer. All our committee members have prostate cancer, there is now 9 groups in Scotland, we are now a registered charity. Our headquarters of the groups is not far away and we have a meeting there every 2 months where at least 2 members from each group go and we speak about our groups and how our groups are progressing, how we are tackling prostate cancer in our area, how we are managing to help people to come to terms with prostate cancer. And also help people that are rather, the men are rather backward at coming forward you know they’re very unwilling to speak about willy, to speak about prostate cancer. And weve got to try and get them into going to see their doctors, getting a PSA test which is important because if they get a PSA test and they have a high reading it does not necessarily mean you’ve got prostate cancer it means you’ve got a prostate problem. Now if they get checked out it can be a problem with the prostate, not necessarily cancer and that is treatable.

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Explains his personal decision to avoid support groups.

Age at interview 57

Gender Male

Age at diagnosis 56

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So you haven’t joined a support group or anything like that to talk to other people?

No I haven’t, no I haven’t done that no. I’m actually really quite busy in my work and whilst this is something that’s sort of part, you know important to me in my life I don’t spend you know sort of a huge amount of time dwelling on it. You know I mean I basically get on with my work and get on with my life and I think if I, may be if I had treatment and you know there were problems attached to the treatment or the condition got so that it was you know worrying me on a daily basis then I might well find it useful to share that experience with other people but I’m not sure, I think that’s a very personal decision.

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Expresses his concern that support groups may quell optimism.

Age at interview 65

Gender Male

Age at diagnosis 63

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Have you actually been in touch with a support group?

No, no I’m not very much a support group person I suppose really. I find in that direction I would much rather do my own research and find out for myself than go along to a group of people all with the same complaint. One of the worst things there if you go to a support group like that and you hear that Bill died last week and Mary has died subsequently it doesnt really do your optimism a lot of good does it?

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Considers it easier to find information via the Internet rather than through support groups.

Age at interview 58

Gender Male

Age at diagnosis 57

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I thought the Internet was great but I didn’t find that the various prostate support groups were terribly useful. One of the reasons for that is I’m sort of an impatient person, every time I rang them up they said, ‘You’re in a queue, or that, ‘All our people are busy right now’, and this sort of stuff. So I just found I never – then or since – have had any contact with the prostate charities. I’ve nothing against them, I support them in principle totally but for me it was just a lot easier to go on the Internet.

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Living with prostate cancer

The initial diagnosis of prostate cancer was a devastating shock to most men (see 'How it affects you'). However, after the initial shock and emotional...