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Testicular Cancer

Talking to doctors about testicular cancer

Coping with a disease such as testicular cancer can be difficult and distressing. For people who experience difficulties communicating with their health care professionals, their problems may be compounded (also see 'Delays in seeing a specialist').

Many men we talked to spoke highly of the NHS, praising their doctors and other health care professionals for the way in which information had been given. One man said that his consultant answered all his questions, put him at ease, and gave him his undivided attention during the consultation.

 

Recalls that the consultant explained everything very well.

Recalls that the consultant explained everything very well.

Age at interview: 34
Sex: Male
Age at diagnosis: 34
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Before we turned the tape over I said, 'Did you get any particular support at the hospital?' and you said the specialist was very supportive.

Yeah, he knew his subject exceedingly well, he knew how, I think his best attribute was the fact that he knew how to talk to a patient, he knew how to put, he was very, very good at putting you at ease. He knew what he was talking about, he didn't try hiding any information from me that I didn't want to know. If I asked a question I got the answer for it. And it was, but it wasn't sort of in techno-babble it was in plain English. And I, I can't remember half of what he said now because my emotional state was so completely and utterly up the creek that most of it went straight in one ear and straight out the other but that's why I had my father and my sister there. My father was sort of a bit of moral support and my sister understood what the hell he was talking about. But having them there made a lot of difference. But just him explaining things very patiently, that there was absolutely, when I walked in his office I had his total undivided attention and there was no, when I was in that room he was the only person I was dealing with, end of story.
 

Another young man said that when he discovered that the cancer had spread to other parts of his body he felt a huge sense of shock. He was only fifteen at the time. The consultant explained in detail how the treatment worked, which made him feel much better. However, on one occasion he felt communication was poor because a doctor spoke to his mother instead of directly to him.

 

Recalls that the consultant explained everything and made him feel better.

Recalls that the consultant explained everything and made him feel better.

Age at interview: 22
Sex: Male
Age at diagnosis: 15
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So as my consultant put it, it was a tumour the size of an orange in my back, which was causing this pain my back. So it was another shock at that point, to think right I've had all this done and I knew there was a possibility that I'd have to have more treatment, but to find out that I had another large tumour in my body as well was a bit daunting to say the least. So the week, the same week that I got back from holiday I was taken into the hospital that I had my treatment, and met the consultant that treated me, and he explained exactly what was going to happen, how the treatment worked, his success rates which were very, very good, it was a very high success rate for treating and curing this cancer and really, really made me feel very at ease. And I was obviously still very, very scared but he did make me feel a lot better about it than I would have if I'd just been told, he did explain very, very well what was going to happen.
 
 

Recalls that one doctor spoke to his parents instead of to him, and that nurses were better at...

Recalls that one doctor spoke to his parents instead of to him, and that nurses were better at...

Age at interview: 22
Sex: Male
Age at diagnosis: 15
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The communication between you and the doctors and nurses how was that?

Most of the time it was really, really good. I found the nurses very easy to get on with, slightly easier than the doctors, they seemed to know a lot, well they didn't know a lot more about it but they were a lot better at communicating it than the doctors were. There was only, I only had one really bad incident with a doctor, in fact a consultant when we were, me and my parents were sat in the room talking about something and the consultant turned to my mother and said "So does it hurt when he does this?" And my mother looked back at him and said "I don't know why don't you ask him, he's sat next to you." And the consultant couldn't quite get his head round talking to a 15 year old as if he was an adult.
 

One man said that he was given plenty of information at the clinic, and that he and his wife were very glad to receive a tape recording of the consultation. However, not all consultants seem to encourage this practice; one man took a tape recorder to the clinic, and said the consultant 'ignored' his request to record the consultation.

 

Recalls that he and his wife found the tape recording of the consultation and the information...

Recalls that he and his wife found the tape recording of the consultation and the information...

Age at interview: 39
Sex: Male
Age at diagnosis: 36
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Oh they give me loads of information and when I had my first appointment, when I was chattering to the specialist we was actually in a room and they were taping everything that was said so that if you do have any questions you know they give you the tape. You take it home and you can sit and listen to it, they give you all this advice on there. But you know when you go in, I mean as I say when I got diagnosed with it and I was thinking, 'Well that's it', you know, there's nothing I can do, but the wife wanted the tape as well so that she could listen and she was asking more questions than what I would of because I'm just the one to say "Right okay I've got it so they'll have to cut it out." But she wanted to listen to the tape because it gives you a lot more information from the actual cancer treatment clinic. You know they give you booklets and this audio tape which they give you, I mean it helped the wife a lot because there's questions in there that she'd asked, you know asked me when I got home which I wouldn't have asked. But then she come down to the hospital and say "Right I'm coming with you," and she'd go in there and say "Right I wanted to know this, I wanted to know that," and they are really helpful down there.
 

Sometimes communication broke down. For example, one man remembered that a young doctor (or student) examined his testicle in the outpatient clinic and then simply 'fled the room', without saying a word. Some men said that health care professionals tended to avoid the word 'cancer', and either used the word 'tumour', or avoided giving a diagnosis. Other men saw a different doctor every time they attended a clinic, and complained about the lack of continuity.

 

Recalls the time when he was examined at the hospital but was not given any information.

Recalls the time when he was examined at the hospital but was not given any information.

Age at interview: 46
Sex: Male
Age at diagnosis: 44
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But as I say, when I got to the point when I couldn't ignore it any more I went to my GP. And he didn't seem to think that there was anything wrong particularly, but he said he'd send me to the local hospital to have it checked out. And it was about six weeks later when I went down there. I saw a young guy, I'm not well up on terminology of different types of doctors but he seemed to be a student or a new doctor, very inexperienced and when he examined me he fled the room, didn't say a word, just looked quite shocked and fled the room. He returned then with a more senior colleague, more experienced man I presume who, they mumbled to each other, still leaving me in the dark of course and I was told that I'd be coming back in for... what's the term?

For ultrasound?

Ultrasound yes ultrasound.
 

Before surgery some men we interviewed said they were not given enough warning that the surgeon planned to remove the entire testicle. One man was convinced that he had been told that he was in hospital so that the lump could be removed. He was not expecting an orchidectomy (removal of the entire testicle). This lack of communication left him and his family feeling angry and distressed. Other patients we listened to had a similar experience.

 

Recalls that he expected only to have the lump removed and was shocked to discover he was having...

Recalls that he expected only to have the lump removed and was shocked to discover he was having...

Age at interview: 21
Sex: Male
Age at diagnosis: 21
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The doctor came round, marked on my left thigh what testicle it was you know that they were going to be operating on. Then a consultant came in, he said that did I know what the operation entailed? I said, "Yes removing the lump." He said, "A radical orchidectomy," I said "No removing the lump," he said "Yeah." 

My girlfriend commented on the look on my face, when he used radical I knew that it wasn't probably just going to be removing the lump. So then my doctor came round with a consent form and said, 'Did I have any questions before I signed it?' I said "Yeah one big question that's burning inside me what are you actually going to do?" He said, "We're removing the testicle." And I just looked at him in amazement. 

And I remembered back to the Monday that I was told that I was going to have the operation and I remember his exact words "We are going to remove the lump." At no point did he say that we are going to remove the testicle. So I sat there in amazement. I signed the form. I wasn't going to go back. I knew that it was the best thing for me. He said that operating on a testicle with a lump on it, if it was cancerous that would encourage the cancer to spread. So I then went on to ask him if it was cancer what would then be the procedure. He said that I'd be asked back in for a CT scan and then obviously further treatment if required. So again I just, it all came to me, it was three hours till the operation and they tell me this. It was not good timing.
 

One man described a lack of communication in the ward after surgery, which made him feel very frightened. The consultant's manner, his body language and the delay that occurred before he was reassured that treatment was available, made him assume the worst possible scenario.

 

Recalls lack of communication immediately after the operation.

Recalls lack of communication immediately after the operation.

Age at interview: 33
Sex: Male
Age at diagnosis: 26
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And then the surgeon came to see me and he came and stood at the foot of the bed, shook his head and tutted. And it was probably only seconds but to me it seemed like a lifetime, just shook his head and tutted and that was his diagnosis that I'd got cancer. And I was lying in a hospital bed, right by the window, 4 or 5 floors up, and thought well that's fair enough then we'll jump out now and finish it because I must be riddled, I must be dying from that diagnosis. And he went through it, he then took my parents and my girlfriend to one side, drew the curtain around the bed, walked them through the ward, across the corridor and into another room and gave them a different story but still started with the same scenario of shaking his head and tutting.

What did he actually tell you?

He told me that I'd got testicular cancer and that was, that was it. But by the time he'd told me that my head had already gone because he'd stood there shaking his head and tutting at me so I thought I was riddled and that was that. Then he gave my parents and my girlfriend a different story and they came back. He went and that was the last, I never saw him again, that was it.
 

Another man recalled the times the consultant discussed his case outside his room with junior doctors without involving him.

 

Recalls that the consultant used to discuss his case outside his room without him.

Recalls that the consultant used to discuss his case outside his room without him.

Age at interview: 32
Sex: Male
Age at diagnosis: 27
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I've found that on the weeks that I was in hospital receiving the chemotherapy the one day a week the oncologist specialist would breeze into the room with his entourage of junior doctors with him, he would stand at the bottom of the bed, er look at your chart, look at the percentage of the different drugs that were being given to you and the chemotherapy treatment. Ask you very quickly how you were feeling, a very quick examination and then he would go out of the room and the door would shut. And you knew because you could hear, hear them speaking outside of the about you. And I almost found myself falling off the hospital bed with a cocked ear to try and hear what they were taking about. It's, that sort of situation is very poor in my own mind and it shouldn't be happening but it's along the same lines as the old style of doctoring and hopefully at some stage in the future that will change.
 

One man suggested that men might feel less embarrassed if doctors used less technical terminology when talking to patients. Some men recalled that the nurses offered better explanations than the doctors, using lay terms instead of technical ones.

 

Suggests that doctors should use less technical terminology when talking to patients.

Suggests that doctors should use less technical terminology when talking to patients.

Age at interview: 28
Sex: Male
Age at diagnosis: 27
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I was waiting for the operation the doctors would come round and they'd draw on parts of your body and say "Right this is what we're going to do," but they were using the technical terms perhaps like testicles, penis er pubic hair, stuff like that. And it, I was a little bit embarrassed to be honest with you, perhaps shying away. I'd rather them perhaps use terms that I would use personally day to day and relax me more. You know if they'd perhaps just said "We're going to move your old man to the right a little bit so we can shave your pubes," rather than, you know "We're going to move your penis to the right and shave your pubic hair. We're going to take one testicle out," use the word bollocks for Christ's sake, that's what men are used to on that yeah. And they'll, definitely I think it would relax them more.

Right

It relaxes me more, just using everyday terms that I'm used to.
 

Sometimes health care professionals treating the men we spoke to made wrong assumptions about the men's wishes to remain fertile or store sperm. Communication broke down because these issues weren't properly discussed (see 'Fertility').

Last reviewed December 2017.

Last updated December 2017.

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