Waiting for results

Waiting to find out whether or not the cancer has spread from the testicle to other parts of the body can be a very stressful time.

Some men wwe interviewed were given the results of their CT scans the same day (see ‘Investigations’). However, even waiting a few hours can be stressful. One man waited two or three hours, but he said that they were ‘two or three hours of hell’.

Other men were given their results within a day or two. One was informed by telephone, 24 hours after the scan, that his cancer hadn’t spread.

Many men, however, had to wait much longer to find out whether or not metastases (spread) had occurred. One man was most upset that he had to wait over a week to have the CT scan, in the first place. He thought it should have been done while he was in hospital having his testicle removed. He had to wait another week to get the results and was surprised that the surgeon didn’t seem to understand his concerns.

Explains that he would have liked the CT scan while he was in hospital and that he disliked the…

Age at interview 53

Gender Male

Age at diagnosis 53

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Now I will be honest with you the, the thing that concerned me more than anything else, it wasn’t the, having the testicle removed, it was, I mean that’s a simple operation, they do them all the time so I wasn’t the slightest bit worried about that. What concerned me and I’m sure it concerns, would have concerned anybody is’ Is it anywhere else?’ Now that’s the main thing because if it is then having a testicle removed isn’t gonna make one damned bit of difference one way or the other.

And as I say it was two weeks later – or just over that – I actually had to phone up to say What are the results?'[of the CT scan], and then on the Thursday when I did go in and see the surgeon he said Well I don’t really need to see you do I?’ And I said Well I would like to know what the results are?’ And you know, I can, and really that seemed, they paid little importance to that and I think that was a mistake.

I did see that doctor but that was, that doctor I had an appointment to see him five weeks after I’d come out of hospital. Now I was not gonna wait five weeks to find out what the result of a scan was. I feel, in my opinion I was in hospital, I should have had the scan there and then. To be honest with you it was, it would have been a far easier, I’m sure it would have been easier for the Health Service, certainly put my mind at rest knowing, knowing relatively quickly what the results of the scan were instead of having to go back into the same hospital only a few, only a, not so far away from where I was in, in the hospital.

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One man, who was upset because he had already waited 19 days for his biopsy results, and who had been told over the telephone he had cancer, was told he would have to wait over two weeks for the result of the CT scan. He became so anxious that he paid for a private consultation, and was shocked that his results were then available immediately.

Describes his reaction when he was told he would have to wait over two weeks for CT scan results.

Age at interview 21

Gender Male

Age at diagnosis 21

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So I had the CT scan on 21st August, I was having to wait until 10th September to find out my results. And that was it; I’d completely had enough by then.

They had left me, they were going to leave me until September 10th mulling over in my mind, what happens if I have to have chemotherapy, oh God that means that, that means, again they hadn’t told me. So obviously got the letter at half past 8 in the morning, sat there and sat there and I thought no this has got to end. Rang work, as I’ve got BUPA cover, they told me that that I’d have to pay 100 excess for my treatment. My Dad straight away said “Don’t worry about that, that’s not a problem I’ll pay that.” So that was a relief. So I rang up BUPA and said, “Is this doctor registered?” they said “Yes,” they said “heres a reference number, ring back the secretary. Tell her that you want an appointment, a private appointment.”

So I sat in there [at the hospital], waited and waited, the nurse came through. This is one thing that upset me the most, not, I didn’t burst into tears, but the way the nurse just said “Oh the doctor has just nipped over the other side to get the results of your CT scan.” And I’m thinking what’s the September 10th, why were they going to wait, let me you know wait that long. If it’s taken him 5 minutes to walk and get the results of a CT scan. And hes come in, sat down “Please to meet you.” Just sat there “You’ll be pleased to know that the cancer hasn’t spread.” So I’m like nothing else mattered then, he couldve told me that my house was on fire and I wouldn’t have cared (laughs). I was sat there stunned, I was just relieved and it was just all rolled into one.

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Another man was so stressed by the delay in getting results that he was unable to work, and had to consult his GP about his feelings of anxiety. He had been seen privately, but his consultant went away on holiday. He said that waiting three weeks for the results was the worst experience he had ever had in his life.

Describes the anxiety he experienced while waiting for results of the CT scan.

Age at interview 39

Gender Male

Age at diagnosis 36

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OK, so yeah so it was after the CT scan I had to wait, like I say I had to wait three weeks for my results and during that period you know I tried to go to work, that didn’t work, came back, decided just to stay off work until I got the results really. And, but over that three weeks it, you know I was, I was getting more and more stressed, more and more anxiety and in the end the Thursday, I was getting the results on the Monday, and on the Thursday I went to the doctors and I said to them ‘I just can’t cope with this anymore,’ you know it was just building up and building up inside me and it was just, I just couldn’t cope anymore.

‘so this actually made me understand why people, how easy it is to be, go from being perfectly confident, happy in what’s happening and then suddenly within three weeks you can be completely you know lose all your confidence and just be a complete wreck really you know, sort of not physically but just mentally you know. So that, that actually was a shock for me because I’d never been like that before in my life, never experienced that.

But it, I would say that was the worst time in my, you know the worst feelings I’ve ever had in my life of anxiety and stress and you know just not knowing something. The fear of the unknown it is.

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Some men tried to find out their results by phoning the hospital, but were given various reasons for delays. One, for example, was told, ‘the computers are down’. This man had had excellent treatment while in hospital, but he said that the waiting completely ‘destroyed’ him because he had expected the results quickly. In the end he had to wait three weeks for the results and he said that he could have coped better if he had known from the start that he had to wait so long.

Describes his feelings when he had to wait for his CT results.

Age at interview 34

Gender Male

Age at diagnosis 34

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And then when I was actually seeing him what happened was he was saying “Right okay, oh you know we haven’t got your test results you know they won’t be in yet,” but we said “Okay you know when you get them can you call us. Here is the telephone number,” making absolutely sure he had the right telephone number. He said, “Oh yeah we will call you.”

Surprisingly enough no telephone call happened. I rang up various secretaries to try and find out and got very little, well help. I was then told that you know, when I finally got through “Oh the computers are down.” I thought yeah if I had a penny for every time I’ve been told that I’d be a rich man and as I work in computers I know quite a lot more about them than most of the people who are giving me this as a lame excuse.

And that particular, it was just the way that particular episode was handled, actually it completely destroyed me because I didn’t know what was going on, I was being told completely contradictory information. I mean first off yeah they’re saying “Yeah okay yeah get that, well have all your results and have your CT scans, well have this, that and the other,” and then they go “Who are you?” pretty much. Which you know, what the hell am I doing wasting my time here for?

And that, I mean at the time I’d just come out of the hospital, didn’t, still didn’t know whether it had spread, or whether there was any danger of it you know and this is what the results were supposed to tell me, whether it had gone anywhere, whether it was going, whether I was going to need any more treatment or not. You know this was the most crucial set of results and they completely messed it up. And I was a complete, I was a wreck by the time I’d come out of that which is unfortunate. As I say it was actually only the one incident, the rest of the time all of the staff were absolutely fantastic.

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How testicular cancer affects you

Most men became aware that something was seriously wrong, either during the ultrasound scan, or later, when the urologist identified a tumour in the testis....