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…
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.
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.
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.
Dreaded her early check-ups because she feared they might reveal a recurrence of her cancer.
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.
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.
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.
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.
Her CA125 levels rose indicating that her cancer had returned.
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].
Last reviewed June 2016
Last updated February 2014