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Ovarian Cancer

Treatment outcomes and follow-up

During treatment, and after it finishes, scans and blood tests are done to assess what effects treatment has had on the cancer. For some women these tests were nerve-racking because they worried that the cancer might still be there.

 

Found scans after completion of treatment nerve-racking because she feared that the cancer might...

Found scans after completion of treatment nerve-racking because she feared that the cancer might...

Age at interview: 59
Sex: Female
Age at diagnosis: 49
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Coped with the chemo as best I could, it was fine. And then stopped having the chemo. My GP sent me, I'm sorry the oncologist sent me for my first body scan and I was absolutely terrified. I think I was perhaps more afraid of that than anything because I knew what they were looking for, and I knew that the radiologist had been looking for cancer, or looking for something nasty when I first saw her but that was all right because I knew then that I'd got something wrong with me. 

As far as I was concerned after the chemo and the operation I was fine I hadn't got anything wrong with me, so I knew that was what they were looking for, and I did find that very, very frightening. That was fine, I sailed through that, I've had three of those and they've been fine. And that's it really. I'm here ten years later - fortunately.

One of the most common tests is for CA125, a protein that most women have in their blood. The level is usually higher in women with ovarian cancer, as it is produced by ovarian cancer cells, although non-cancerous gynaecological conditions can also raise it. Many women we talked to were told that the level of CA125 in their blood had dropped from high to normal levels during treatment, although in some women it had never been particularly high.

 

Her CA125 level dropped as she went into remission after her treatment ended.

Her CA125 level dropped as she went into remission after her treatment ended.

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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When the chemotherapy was over I was by this time feeling quite a lot better. I'd had a lot of pain in my abdomen in the initial stages of the chemotherapy but that had gradually got less and less as I suppose the cancer was disappearing, and I went back a few weeks later and had another CA125 which showed in single figures and I was announced to be in remission, which I think was quite a miracle considering where I'd started and the journey I'd had through, that I was to all intents and purposes, free of cancer.

If tests indicate that cancer is still present further treatment may be recommended. In some cases where something suspicious shows on the scan, it is thought better to monitor rather than treat.

 

'Something' was still visible on the scan after treatment.

'Something' was still visible on the scan after treatment.

Age at interview: 49
Sex: Female
Age at diagnosis: 48
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So since then I've completed the course of chemotherapy, which is great, and I've just recently had yet another CT scan to see how it is all developing, what's happened with the treatment. And the treatment has worked well in that I have mostly lost the cancer. There's just one area around my liver which, in the very first CT scan I had, it did show that there was a rim of cancer around my liver but it hadn't actually gone into the liver. And what they can't work out from this last CT scan is if I still have cancer cells there or whether it is something else, some sort of scar tissue or something. But there's something near my liver. So I haven't quite got the all clear but, you know, my general health is getting much better.  

When no signs of cancer remain after treatment women continue to have regular check-ups during remission. These follow-up appointments involve various investigations and some women had to wait a few days for test results. Some women felt anxious about check-ups because they feared the tests might reveal a return of the cancer. Other women were much reassured by the regular monitoring, although sometimes clinics were rushed and women wondered whether they were thorough enough.

 

Finds her check-ups reassuring, but has to wait for the results of her CA125 tests.

Finds her check-ups reassuring, but has to wait for the results of her CA125 tests.

Age at interview: 41
Sex: Female
Age at diagnosis: 35
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Each check-up you see the consultant or one of his juniors. They usually take a blood sample to start with, then you will be given an examination, that is an internal examination. Which at first I was very embarrassed about, I didn't like it to start with but it's become so much part of the ritual now that I don't think anything about it. They will also obviously feel your tummy, ask you how you're doing, ask if you've got any questions, and usually I, usually have, I've usually got something that I want to ask about.

I find them quite reassuring really the check-ups. The doctors are very pleasant and the nurses are nice too. The worst bit about it is actually having to wait for your blood test results. They take about a fortnight before they are reported back to the GP, and I think that's the worst part of it because, although I know that the CA125 is only an indicator, you do latch onto these figures to tell you that you're all right.  

 

Dreaded her early check-ups because she feared they might reveal a recurrence of her cancer.

Dreaded her early check-ups because she feared they might reveal a recurrence of her cancer.

Age at interview: 44
Sex: Female
Age at diagnosis: 38
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Since that then I've had regular check-ups. I know at the start the check-ups were very difficult because, try as you might, you do tend to be maybe in a more negative frame of mind. And I would have dreaded having my blood taken or having a scan because I just thought I can't cope with, if something comes back. And I go now for my check-ups without that same dread because I think again it's something that with time you tend to deal with better. So initially those check-ups were terribly difficult, they're now not that difficult really, although you still would certainly have the doubts, the fears, the anxieties and so on.  

The frequency of follow-up appointments is gradually reduced. Initially they might be every few weeks, then months before reducing to 6-monthly, or annual, check-ups. Some women felt insecure about being checked less often, even after many years in remission. One woman decided, in discussion with her consultant, to have checks less often after a routine scan showed a benign polyp in her uterus that would not have caused symptoms and which she need never have known about.

 

Feels less secure having only annual check-ups, but knows she can return if necessary.

Feels less secure having only annual check-ups, but knows she can return if necessary.

Age at interview: 41
Sex: Female
Age at diagnosis: 35
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I had six doses of chemotherapy and then went on to monthly check-ups at the local clinic. Then I think it went up to two monthly, then three monthly, four monthly, six monthly and now I'm onto yearly check ups. This is the first year that I've been put onto yearly check-ups and I must admit I'm not entirely comfortable with it, and that sounds terrible. 

But I think it's the security of knowing that every six months you're getting checked up has all been taken away from me suddenly, and I didn't realise I'd relied on it quite so much. But I know that if there is a problem I can phone up and they will see me, but this is going to sound very strange, but I think the further, you know, the longer away from diagnosis I am the more scared I am in some ways that, when's it going to come back? 

It is not unusual to be anxious about any body changes during this time. Follow-up practice varies and it is not certain what the ideal procedure is. Some doctors encourage women to be aware of which symptoms are important and to monitor their own bodies. This approach suits some people who find check-ups alarming, but one woman was disconcerted to be told to listen to her body for signs of the cancer returning, and felt she risked becoming a hypochondriac. Another who was told to look out for 'the symptoms' was unsure if she would recognise them as she had had none in the first place. Other women also mentioned feeling overly worried about minor symptoms of illness during their remission.

 

Was disconcerted to be told to 'be her own physician' and look for signs of the cancer returning.

Was disconcerted to be told to 'be her own physician' and look for signs of the cancer returning.

Age at interview: 61
Sex: Female
Age at diagnosis: 54
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Presumably you were having regular follow-ups during your periods of remission?

Yes I was actually and, you know, when sort of once a fortnight then once a month and once, just gradually lengthened the periods of time, and when the consultant said to me 'you are your own physician' I found that very disconcerting and I actually rang Cancerbackup at that time because I felt completely devastated and thought 'nobody's looking after me', you know and, because you are so looked after, well I was, so well looked after, that suddenly you think you're on your own and I felt I could turn into a kind of a total hypochondriac because when somebody says 'you are responsible for yourself really and listening to your body', well you can hear your body telling you all sorts of things can't you that it isn't really, and sometimes he did used to say to me 'but Mrs xxx you can have a headache that is nothing to do with your cancer you know'. So that was a difficult period at first, getting used to listening to your own body, but now I can do that.

Some women were eventually signed off by their consultants and not asked to come for further check-ups.

 

Her oncologist said she needed no further check-ups after 10 years in remission.

Her oncologist said she needed no further check-ups after 10 years in remission.

Age at interview: 58
Sex: Female
Age at diagnosis: 44
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Yes. I had three CT scans sort of three monthly intervals and I would alternate between seeing the gynaecologist and the oncologist sort of every month for about 9 months I think. And then it got to 3 months and then 6, and 9 and then a year. And I, saw the oncologist for about 10 years. And as I say I'm almost sure, no I'm not almost sure, but you know, it was quite nice to have this check every so often although you knew you were OK it was quite a comforter to have the check up and him tell you how wonderfully you're doing and how everything was back to normal and 'Great, you know, you're doing really well,' and 'I always knew you would' and this sort of thing.

And your checkups ended at 10 years?

Yes. The oncologist actually retired, said 'Did I feel that I needed to go on with anyone else?' And I said well I didn't think I needed to but if he felt that I should, then I would. He said 'Well, no, if you're happy then, you know, we're happy as well, so that's OK'. So that was it.

Some cancers recurred after several months or years of remission. In some cases a recurrence was indicated by a return of symptoms or the appearance of new symptoms, or a rise in the CA125 level without symptoms, or because the tumour was seen on a routine scan. One woman's cancer recurred several years after she had been signed off from check-ups by her consultants, and her symptoms were initially misdiagnosed as irritable bowel syndrome. It wasn't until after she moved house and registered with a different GP that the truth emerged. Recurrences of ovarian cancer can often be successfully treated with chemotherapy, and several women we interviewed had had more than one recurrence and period of remission.

 

She recognised the symptoms that indicated her cancer had returned.

She recognised the symptoms that indicated her cancer had returned.

Age at interview: 61
Sex: Female
Age at diagnosis: 54
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And when your tumour came back each time you said you knew before your doctors knew that it was coming back. Can you tell me how you knew, what were the clues?

Oh the same feeling of heaviness, and not inability to move your bowel, but the feeling that you need to move your bowel but the muscles aren't obeying your brain. And sometimes pain. But mostly that, that almost indescribable feeling really of, of thinking oh oh, you know, not like a pain and not having felt ill, but that was the first sign on most of the occasions, not all of them but most of them.

 

Her CA125 levels rose indicating that her cancer had returned.

Her CA125 levels rose indicating that her cancer had returned.

Age at interview: 57
Sex: Female
Age at diagnosis: 52
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How did they know it came back? What was the sign?

What was the signs? Right, yes of course, I mean during the period of remission the hospital monitors how the cancer is behaving by giving CA125 tests, and we got to the stage when we had gone from one month, two months, three months, four months in between tests and that's when it came back, when we had just got about as far as four months. The count went up and then we had to sort of look to see what sort of chemotherapy to have.

Some women had been invited to take part in a trial to find out the best time to treat women whose tumour recurs. In this trial all women in remission received regular CA125 blood tests, and anyone in whom the CA125 level roses was randomised either to receive chemotherapy straight away or to wait until symptoms appeared or scans showed that the tumour has regrown. (See 'Clinical trials'.) This trial has now finished and the results showed that women who started chemotherapy to prevent a recurrence based on blood levels of CA125 did not live longer than those who started chemotherapy only after symptoms of the disease arose [Lancet 2010]. 

 


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Last reviewed June 2016

Last updated February 2014

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