Follow-up for testicular cancer

The aim of follow up care is to detect a relapse at a stage when further treatment has the best chance of being effective, to monitor and treat any side effects of therapy, and to offer support and information.

The frequency and nature of men’s check-ups varied according to the type of tumour the men had had removed, the type of treatment they had received, and on whether or not cancer had spread to other parts of the body.

Most men had weekly or monthly checks to start with, followed by six monthly, and then yearly checks. Some experts think that it may be reasonable to discharge some men five years after treatment. However, most men here were followed up for ten years. During the check-up men usually had a chance to talk to a doctor about their health, ask questions and seek reassurance. One man said that he made a list of questions before he went for his appointments. Men normally had a physical examination too.

Recalls that he had regular check-up appointments for ten years.

Age at interview 51

Gender Male

Age at diagnosis 23

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And how many, how often did you have to go for check-ups?

I went firstly every 3 months and that went on for about a year I think, for 3 months and then it gradually got to six months and then it got to a year. And then after about, I think it was about 10 years, they said that they didn’t want to see me again unless I had any problems.

And what did they do when you went to the check-ups?

Nothing very much. An x-ray perhaps and just felt my glands. Blood tests occasionally but that wasn’t very long. It was probably two or three minutes, you probably waited two hours to go in and it was probably three or four minutes seeing the doctor and that was it.

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Describes his check-ups and says that he is confident the cancer will not return.

Age at interview 25

Gender Male

Age at diagnosis 22

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And then I had regular check-ups. Because I moved with the job they also referred me to the local oncology unit so I then, I was having for the first month a blood test every 2 weeks and a blood test and a chest x-ray and like a physical examination every month. That lasted for 6 months

Somebody feeling your stomach?

Yes stomach, er between your legs, all your like, again all the sort of lymph nodes around the body, your heart and lungs and whatever. As I say, yeah, chest x-ray, take a blood sample from you. And so that was, that was like every month and then after 6 months it goes to every 2 months and then after another 6 months it goes to every 3 months. And I’ve just had one last month and now because I’m going into my fourth year it will be every 6 months now, which er it did turn out, towards the end it was just, it was a day off. I could work out that I could, if I got in there nice and early I could get everything done by 10 o clock, I could be home by 11 and have the afternoon off. So I never felt as I went back to the hospital, Oh God what are they going to find again.

You didn’t feel anxious?

No I thought well once it’s out and the doctors said you know “It’s out now, you’re going to be, it’s very rare that, luckily with testicular cancer once it is out and you’ve been shown the all clear then I think it’s very rare that it does come back, they told me that. So I was confident that it was just again a routine, I’ve got to do this so that’s what I’ve been doing for the last 3 years.

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At each appointment blood tests were usually done. The results of these blood tests are particularly helpful as indicators of any recurrence for men who have had a tumour called a teratoma. Blood tests are less useful as indicators of recurrence for men who have had a seminoma. Chest x-rays were also done routinely to make sure cancer had not spread to the lungs and other organs.

Explains that chemicals in the blood are good indicators of new tumour growth for men who have…

Age at interview 24

Gender Male

Age at diagnosis 22

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And celebrations started and I had like three weeks of having fun. And in the first year after being in remission they give you a CT scan every 3 months and then you visit the doctor monthly for a blood test and an x-ray. And the blood test is probably the best indicator that something has come back because it’s very, very sensitive to the tumour growth, the fact that these hormones are being produced. That’s probably the best sign that something has gone wrong. And they check you ever year, every month for a year and in that period, that first year is the most likely period for it to come back. But I was fine with that and I’m now in my second year after remission and they check every 2 months and then your third year they check you every 3 months and then in your fourth year it’s every 6 months and then after the fifth year it’s yearly just to make sure it’s kind of, have a general check-up, give you a general check-up. So, and that again becomes part of the routine. Every month you would go in, you’d go and see the receptionist you knew really well, chat to the people that you’d see every month there and it’s quite, it’s kind of a community feel.

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Explains that a seminoma doesn’t produce any change in tumour markers but it can be useful to…

Age at interview 46

Gender Male

Age at diagnosis 42

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Blood tests, yes I have blood tests each time I’m there, in fact the blood test is done after I see the oncologist, so if there is an abnormal result it will probably be communicated to me via my GP. The nature of seminoma is it doesn’t produce any change in tumour markers so one doesn’t do them with the expectation of finding anything wrong and indeed one could have quite a significant relapse without any change in blood tests. So you know a normal blood test may be a false reassurance. On the other hand I think it’s because of the fact that occasionally tumours can be mixed, it probably does no harm to have the tumour markers done.

A mixed did you say?

Sometimes one can, sometimes what appears to be seminoma may be a mixed tumour and therefore occasionally it can be associated with production of hormones.

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Some men had a single CT (CAT) scan soon after the operation. Further CT scans are not necessary in every case, and one man was worried that his frequent CT scans might cause another cancer later in life. However, two men asked to have another scan after five years, just to reassure themselves that they were really clear of cancer.

Some men, particularly those who had had metastases (cancer spread), those who were on new treatments, and those who had chosen surveillance (see ‘Surveillance’), had CT scans more frequently. One was having CT scans every two months, another every three months, and another every six months. One, who was taking part in a trial, had a second CT scan after a year.

Recalls that the doctor explained about the regular check-ups that would be necessary.

Age at interview 21

Gender Male

Age at diagnosis 21

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He explained that I would be sent in for regular check-ups, blood tests every 2 months and then thered be CT scans every 6 months for 3 years, which pleased me. I thought finally I’m getting, you know, treated with a little bit, a little bit more concern rather than just not telling me what’s going on. I decided to stay private which obviously if I hadn’t had the cover then probably not, through work, but if it’s there I may as well use it. So that was 24th August I found out that I had the all clear, rang as many people as I could find in my phone book, just rang everyone, everyone was so pleased.

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Many men feared a recurrence, and found the uncertainty of not knowing whether or not the cancer would return hard to bear. Some found the period immediately before their check-ups very stressful indeed, but this diminished as the months went by.

Says that the support group helps to put his fear that the cancer will return into perspective.

Age at interview 36

Gender Male

Age at diagnosis 29

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And the one thing that I’ve got from dealing with the group is that it’s very therapeutic, you know it puts things into perspective. You see things that, you know the fears that you’ve got that it will return or whatever, you suddenly realise that you’re not the only one feeling like that, all men’ you know. I think anybody that’s had cancer their main fear is that it will return and you was lucky the first time but will you be lucky the second you know. And it’s just, just confirmation that you’re not the only one who thinks like you are and you’re not crazy you know.

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Worries that cancer might come back even though he knows that it is most unlikely.

Age at interview 50

Gender Male

Age at diagnosis 44

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Well I think a lot, you hear a lot of stories and how it affects you and it changes your life but I think in my case (laughs) I don’t think it has. I think you know, I don’t think it’s actually, I think until I actually finish and get discharged I still think, I’m still, I still think that theres a tendency that it might come back and I think until I actually discharge myself I’m still going to think along those lines, I don’t think I can, I can’t get it out of my mind that it might come back.

Does that prey on your mind a lot?

It does yeah. And I know from all the reading and research that I’ve done that it shouldn’t. I know that I’m sort of cured basically and I know that the chances of it coming back are minuscule. But I suppose I’m just, I’ve just always got that nagging feeling that it might.

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Describes how his worry before each check-up appointment decreases over time.

Age at interview 33

Gender Male

Age at diagnosis 26

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So once a month you go back for a check-up. Two weeks before you go back you’re dying again, cancer has come back again, I don’t feel well, it must be cancer, I’ve got a pain there it must be cancer, everything turned into cancer regardless of what it is. You go for your check-up, they take a blood test to check to see your cancer markers, to see if they’re, what level they’re at and a chest x-ray to make sure there are no shadows another lump of cancer anywhere. You’re given the all clear again and I go home. Two weeks after I’m given the all clear, I’m fantastic, fine, everything is great again, brilliant, I’m living, I’m alive, cancer has gone. Then 2 weeks before you go for your next lot you’re back down and life goes like that in peaks and troughs for 3 years where you’re nice for 2 weeks, nasty for 2 weeks, nice for 2 weeks. But as you get further down the line you start to get a little bit better and it perhaps goes from 2 weeks to 8 days [before the check-up] before you start to panic and it goes, it spreads further and further apart.

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One man found his check-up appointments tiring because he worked nights, and the long time he spent at the clinic cost him valuable sleep.

Describes the long drawn out process during his follow up appointments at the clinic.

Age at interview 39

Gender Male

Age at diagnosis 36

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It’s just like as I say I have to keep going up to the hospital every 6 months but that’s the only drawback because it costs me a day of no sleep if you like. Because by the time you get up to the hospital you have to queue up to wait for your blood test, and then you have to go to another department for your x-rays, but in between time you’ve got to fit in the specialist so you can’t see the specialist until you’ve actually had your blood and your x-rays because you have to take your x-rays down to him and it’s just such a long drawn out process. Although it’s only once every 6 months but if, because I work nights, I go straight from work and then after spending all day at the hospital you know then you come home and you’re tired, then you’ve got to go to work.

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Other men, however, said they didn’t worry about their check-ups. Most found it reassuring that they were being closely monitored. Some said that they enjoyed their check-up appointments at the hospital, and one man said that when his check-ups came to an end after 10 years he felt that part of his support system had disappeared.

Says that the follow-up was tremendous and that it was a good experience.

Age at interview 55

Gender Male

Age at diagnosis 52

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The doctors at my hospital here yeah, and that was it started off every month you know and have x-rays and blood tests. And the follow-up you know was tremendous, it was also good to get out of work you know. Sit in the waiting room, read a magazine and speak to the doctors, you know, and the head of the place here, you know, you get to speak to him and whatever questions or what have you, you know they’re all incredibly nice. It was quite good, a very good experience actually out of all of it, rather than thinking, ‘Oh God, this is all ghastly’, you know, it was pleasant. I know that sounds terrible doesn’t it?

No, a lot of people have said that they felt some good has come out of it.

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Says that when his check-ups came to an end he felt as though part of his support had disappeared.

Age at interview 39

Gender Male

Age at diagnosis 22

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You’re then into a close monitoring system for a long period of time and, get it right, I think it’s 10 years at ever increasing intervals. So after the last treatment I think it was every month for a year. I had to go back, have a chest x-ray, occasional CT scan, check there was no reoccurrence, good examination, looking at bloods etc. etc. Then it went to every quarter I think, something like that, then it went to every half a year then once a year and then they say “Well touch wood, you’ve been clear for 10 years on your way mate, we don’t want to see you here again because you know if we do then you’ve got problems.” (Laughs).

What was it like having to go back all the time?

I was quite happy to do it because at least I was being checked. Theres a lot of people out there who don’t like going to hospitals and aren’t being checked and they may have problems so I actually enjoyed it. When I finished it was almost like part of the support disappearing if you like because at least I knew I was having a regular chest x-ray once a year if you like and that was checking for well what it was like.

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After ten years of check-up appointments one man felt ‘wonderfully liberated’. He found that after a number of years the check-ups ceased to be reassuring, but instead put him back in a ‘cancer mode’.

Arthur Frank explains why he believes that the second five years of follow-up examinations were…

Age at interview 55

Gender Male

Age at diagnosis 40

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So what’s happened since then, how many do you go back every 6 months for a check-up?

Arthur Frank replies’ It was every, it was every 3 months and then every 6 months and then once a year and when that ended in, 5 years ago, in 1996 or 1997, it wouldve been 1997, 4 years ago, it was very liberating, it was wonderfully liberating, because going back for those follow-up exams had really ceased to be reassuring, they were instead putting me back in a cancer mode. And they led to, in one case you know a very invasive surgical procedure that couldve been quite nasty; due to the skill of the surgeon it wasn’t, but it couldve been er that I just didn’t need, you know.

So when they were looking at the nodes it was possible you didn’t

need that at all?

Arthur Frank replies’ Well no I mean they never would have known that I had Sarcoidosis if they hadn’t been investigating me for cancer and if I didn’t have a history of cancer and I happened to have a chest x-ray and they’d found this they wouldve probably expected Sarcoid, they certainly wouldn’t have, it wouldve been far too aggressive to have biopsied a normal person because it’s a very risky biopsy, you’re going by all these major arteries in the chest and serious things can happen. So you know even if they’d happened to do a chest x-ray for some reason at that time they wouldve taken much more of a wait and see attitude. So, so for me now if I had had a recurrence of cancer of course I wouldve been very grateful to have had that picked up as quickly as possible and move as quickly as possible into treatment er but I think one thing that patients need to be clear on with their cancer centres is, What was the last recurrence you’ve ever had. And in my cancer centre the last recurrence was about 5 years after treatment, which means that the second 5 years of follow-up exams weren’t really in my best interest as a patient, I was really serving research at that point.

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