Finding information about testicular cancer
People diagnosed with any type of cancer want at least some information about their illness and what is going to happen, and research has shown that about half of these patients want to be actively involved in decision-making about their treatment. Thus it is important that patients receive the level of information that fits their needs.
Some of the men interviewed told us that health care professionals, whether NHS or private, had given them plenty of information - even to the point of being boring. One man, who was seen privately, remembered that he talked to his consultant about his treatment options and the various types of tumour for a good couple of hours.
Recalls that the doctors gave him plenty of information.
Recalls that he and his wife found the tape recording of the consultation and the information...
Says that he was given so much information it almost became boring.
Did you, were you given enough information about the disease itself?
Yeah, oh yeah, overkill, literally overkill. If you wanted to know you could find out anything, you only have to ask a nurse and a nurse would just uh, you'd only have to ask the, the GP specialist. You know, even if you didn't ask you was told!
Yeah! You know you can get quite boring on the subject you know!
So there was plenty of information?
Oh there was plenty of information once you was in the, being treated by cancer specialists, yeah, there, there was no hidden corners or anything. You was given what could happen, why this could happen you know, nothing was hidden from me, no. I mean I was told what the teratoma was, a wild cancer you know, it could be, you know, could re-appear anywhere in me body, and whatever, which is why I needed the scan, they did the scan, there was no, there was no sign of it anywhere else in me body and then they went ahead with the plasma treatments and what have you, the 'plasmatics', that's what they're called, and burnt it out of me blood system.
Were you given written information as well?
Oh there was written information all over the place if you wanted to read it but to be quite honest we was all bored with it. Well, you're, you're in there, you know what's happening to you, and that's all you're bloody interested in really.
Remembers that his doctor talked to him for a couple of hours about different treatment options...
And then as I say literally a couple of hours after that I was being prepared for the operation. I obviously had time to call my family and tell them what the situation was but I think they were prepared for that anyway. We all knew that there was some problem there which needed sorting out, so that wasn't too difficult.
So he talked to you for a couple of hours, what did he go through in those couple of hours?
Yes well all these things about the options that were open to me, what types of problem it could be. There's the, I mean I'm not an expert on it either but I think the most common tumour is a seminoma which is perfectly curable if caught at an early stage and he explained, he went through basically how that occurs and how it's treated. And then he went through the other more aggressive types of tumour that it could be and he explained that there could be more difficulty with those if it turned out to be something like that.
A few men said that they didn't want to be told too much. For example, one man said that too much information was 'depressing', and that he wanted to focus on other aspects of his life. Another man said he was afraid to learn too much about his illness.
Explains that he had the information he needed and asserts that too much information can be...
I'd been told everything I wanted to know. Sometimes too much detail is, actually that doesn't help, it just makes you focus on, I think the most important part actually is basically to pick up the rest of your life and get on with it. You can focus too much on the problem and if you, if your entire life is concentrated on focussing on just that disease then actually you're not getting on, you're not moving on, you just, it becomes like a mental cancer, it just eats away at you. It just chips away at your spiritual resolve and you end up becoming a complete nervous wreck. Well I wasn't going to allow that to happen I'm afraid, I'm a stubborn old sod (laughs). I was going to get on with life. I just said, "Right it's being dealt with, I'm going to get on with the rest of my life and whatever happens is going to happen. And I'll deal with the various bits and pieces as they happen. And if I need to have chemotherapy I'll deal with it then. If I don't need it well fine what's the point in dwelling on it."
Some men, however, said that they would have liked much more information. One man, for example, believed that if he had had known the 'worst case scenario' he would have been better prepared psychologically for the news that the cancer had spread. (Also see 'Talking to doctors').
Suggests that if he had had more information he would have been better prepared for the news that...
It would have been better if I had been told and informed and known what to expect. Even if I was told the worst, anything else would have been a bonus. If I was told the worst scenario, the worst situation, then I could have prepared myself psychologically, but to go into an interview room to be told, what I thought would be, 'The operation's been a success, the cancer's gone and that's the end of it.' To be then told that the cancer had spread and I needed to have chemotherapy was a big shock, both for myself and for my wife. I mean my wife was crying, I was very upset, it was a very frightening time.
Some men found it hard to get information. One recalled that when he was in hospital he had asked a nurse to explain what was going to happen, but she didn't know. When he asked the doctors for information they said that they would return, but he said they didn't return because they were busy. He didn't find leaflets adequate, so he went to the library and found an informative book.
Recalls that he wanted information but that the doctors appeared too busy to talk to him.
Was it hard to find a doctor to ask questions?
It was really yeah to answer them [questions], if you wanted them being answered, and that's why I went to the book side. I thought well if I get the book, the book will tell me everything.
So did you see the book before you had the surgery?
That was after, that was after. I was trying to get everything I could. As I say I had the leaflets, the leaflets they helped me but I wasn't getting everything out of them leaflets as what I should have done I didn't think.
Did you not get a chance to ask questions of a doctor in the hospital?
I did but they were busy, they were busy and I could understand that as well like you know. I was trying to ask them, you know, but all I got about the feedback was, "I'll come back to you." Well it was never, that coming back they didn't come back because they were that busy to come back to me. So I had the nurses there all the time like but like I say they didn't know enough about it to tell me like you know.
Some of the other men found libraries useful, and one said he borrowed a huge stack of books from the Cancer Information Centre at the hospital. A few men had easy access to medical journals, one because his wife was a nurse, and others because they were in the medical profession themselves.
Men also said they found that the booklets produced by cancer charities and support groups helpful, and one recalled that he had read useful articles in newspapers.
The Internet was an excellent source of information for many men, and for family members, if they had access to computers. A man who was looking for information about CT scans said he found the Cancerbackup website 'very helpful' (now merged with Macmillan Cancer Support). Another suggested that those without computers could use an Internet café to find information (see the 'Resources' section of the site for a list of web sites and resources related to testicular cancer).
Recalls that he found the Cancerbackup's website very helpful.
So they hadn't given you any information leaflets at the hospital?
No absolutely nothing, absolutely nothing. All that came through was just letters and appointments, no leaflets.
Did you find any other websites that were useful?
No we just stuck to one, the Cancerbackup, which you know for what I needed to know it was ideal.
Says that the Internet is a brilliant way of finding information.
We have one very big advantage with testicular cancer or with any form of cancer or with anything that is available now and that is called the World Wide Web. Now I use Yahoo, that isn't an advert for Yahoo, that's the way that I find it's best. You go into Yahoo, and you type in testicular cancer, and I guarantee you that for the next two weeks you'll be looking at every site that is different. You have people's experiences, you have drug information, you'll be able to read papers that are published on the web by some of the most eminent, eminent doctors that are around. There is no excuse these days, if you haven't got a computer go down to an Internet cafe, there is no excuse whatsoever for not finding out about testicular cancer or all the other things. I mean type in Carboplatin on the web, it will tell you about the chemotherapy that I had. Type in Virormone, which is the hormone that I inject myself with, it will tell you about that. The information technology break through of having the Internet available is just unreal. You know we're very lucky because we're at the dawn of something that is quite remarkable with the Internet.
It's all, it's all access, it's all getting, having information at your fingertips. You know to go out and start going to a library and borrowing books or all these different sorts of things require a hell of a lot of effort. It's now literally, was it “two clicks away”, is that what Microsoft say? “Two clicks away”, so that's, it is there, a web site is there. A web site is the most brilliant idea for spreading information.
Some men found American web sites informative, though they pointed out that American terminology often differed from British terminology, that some American sites offered conflicting advice, and that some explained the differences of opinion.
One man we spoke to said that he liked using the Internet because it offered him an opportunity to ask 'dumb questions' in the total privacy of his home. Another man said that he liked a web site's 'chat' line because men who had experienced testicular cancer could answer his questions, and one man said that he had found a self-help group as the result of using the Internet.
Says that the Internet was helpful but that American and English websites sometimes gave...
And you suddenly realise there's a huge void in what you know, and you need to fill that void. And its so personal because its you, its your body but, but you need to go somewhere. What better place to go than, well certainly in my own circumstances where I have a computer at home, that I can just switch on, in total privacy. I don't need to feel that I'm asking a dumb question. I don't need to feel that I have to ask all the right questions first time round, and that you know however long a doctor might be prepared to sit in front of me and answer my questions, at the end of the day, you know we're going to dry, you're going to dry up and not be able to answer another, ask another question. And you move on and then that's when you suddenly think, oh I should have asked x, y and z or what-have-you. Having it on a Website means that you can go at any time of the day and you can go back as many times as you like and re-read and ask the same question, because there's a lot to know.
Says that he found the 'chat rooms' and message boards on American websites useful.
I found some very good American sites, medical sites and they're sort of interactive so you can mail people on a, like is it a chat pool do they call it or something like that?
A chat room.
It's a message board or whatever and people can respond to your questions and you know who've had similar experiences etc, which again was very good.
Have you used that, have you sent messages to other people?
Yes I have, yes, yes. But information-wise I found there was very little in Great Britain. I also found that some of the terminology, the American terminology wasn't quite what we use over here, so it was difficult. So I did find out a lot about testicular cancer, the various types, the sort of age groups it affects and I suppose I wanted information, I wasn't getting information from the hospital or the doctors, I found it out for myself really.
Some men asserted that they obtained most help from other patients who were going through the same experience, and many men said that they were helping to make a Healthtalk module because they could see the advantages of listening to the stories of other people who had actually had testicular cancer.
Explains that he obtained useful information by talking to another patient.
Yeah there was plenty of books and paper leaflets, that sort of thing, lying around the hospital and everything, you can read and all that lot. But I found the best, you can read as much as you want but actually talking to somebody who's going through it is a lot better than reading any old book or anything, I found that.
Could you find anybody else who was going through the same thing as you?
At the time there was somebody else there going through exactly the same as me actually at the time and obviously we were comparing. So it sort of helped us both because we both didn't know nothing at the time, it was all a brand new experience for us, brand new experience.
Recognises the advantages of listening to other men who have had experience of testicular cancer.
Last reviewed December 2017.
Last updated December 2017.