Testicular Cancer
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.
Recalls that he had regular check-up appointments for ten years.
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.
Describes his check-ups and says that he is confident the cancer will not return.
Describes his check-ups and says that he is confident the cancer will not return.
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.
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.
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 the 'Surveillance' section), 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.
Recalls that the doctor explained about the regular check-ups that would be necessary.
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.
Says that the support group helps to put his fear that the cancer will return into perspective.
Worries that cancer might come back even though he knows that it is most unlikely.
Worries that cancer might come back even though he knows that it is most unlikely.
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.
Describes how his worry before each check-up appointment decreases over time.
Describes how his worry before each check-up appointment decreases over time.
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.
Describes the long drawn out process during his follow up appointments at the clinic.
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.
Says that the follow-up was tremendous and that it was a good experience.
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.
Says that when his check-ups came to an end he felt as though part of his support had disappeared.
Says that when his check-ups came to an end he felt as though part of his support had disappeared.
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. There's 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.
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 not in his best interest.
Arthur Frank explains why he believes that the second five years of follow-up examinations were not in his best interest.
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 would've 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 could've been quite nasty; due to the skill of the surgeon it wasn't, but it could've 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 would've probably expected Sarcoid, they certainly wouldn't have, it would've 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 would've 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 would've 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.
Last reviewed December 2017.
Copyright © 2024 University of Oxford. All rights reserved.