When does remission start?

It's something I've pondered about but don't know the answer. I get the reslts of my latest scan on Thursday but so far since the hysterectomy, during treatment and after an intermediate scan the ca125 has been down and the comment after the scan 'no signs of disease', but no-one's said the remission word.

Suggestions anyone?

Christine

12 Replies

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  • Hi Christine,

    Remission usually starts after the scan at the end of your chemo and it shows clear... but I don't think they necessarily tell you that you are in remission, I think you might need to ask,

    I asked "where does this leave me am I in remission ? " my oncologist then said "yes" (it is like getting blood out of a stone though) best wishes love x G x :-/

  • I had to as well!

  • No one ever told me but then, I didn't ask, either. I think at that stage I was in a state of shock. They've always just said to me something like 'it all looks good at the moment' Not too technical, but then, I prefer simple words as long as there isn't something more complicated going on.

    It probably makes sense to ask. All the best for the next appointment!

    Love Wendy xx

  • Hi Christine,

    I think they will tell you as little as possible, unless you ask, and you need to be specific in what you want to know, I couldn't stand the thought of me not knowing, I told them if I was going to die next week I'd want to know, (now I know they can't say for sure,and they haven't got a crystal ball either) but I would put my questions back to my oncologist saying " in his experience he must have some idea " (I think he was pretty shocked how blunt I was) and squirmed a bit, but I appreciate that some people wouldn't want to know too much, (but I do) so I guess it is up to you how much you want to know about your prognosis (I am very happy that I am still here when they didn't think I would be... so every day is a bonus) love x G x

  • Hi Christine,

    I;m not in remission as I still have disease after all my treatment finished. I said 'this means I'm not in remission, so where am I' I have asked Oncologist and surgeon for prognosis with no straight answer. My state is stable with no symptoms.

    I hope this happy state remains so for a long long time,

    love Chris x

  • Hello Christine,

    There are two kinds of remission (which just means diminution of disease as a result of treatment) partial and complete.

    As patients we are hoping for complete remission where there is no detectable disease. Some doctors will use the term partial remission when there is detectable disease, but it is reduced and inactive, and lkely to remain so for some time.

    You do need to ask for specifics as many doctors are reluctant to make statements about ov. ca., which can be hard to detect and unpredictable. It sounds from your description as if you are in complete remission.

    Best wishes,

    Isadora.

  • Dear Christine

    I've been in remission in my head since I woke up from surgery in April or May 2011 with all the painful bits gone. I was in remission throughout my chemotherapy as I felt well and had minimal side-effects. I'm still in remission 14 months after my chemotherapy finished even though my CA125 count is rising and I have a scan booked this week.

    This is not the official definition of remission but it makes me happier thinking that I'm in remission in this way and I shall continue to consider myself in remission until someone tells me otherwise. When that happens I'll deal with it as best I can.

    Loads of love xxxx Annie

  • Hi Christine

    My onc says there is no remission. She reckons you either have cancer or you don't! I quite like that simplistic view. I don't have cancer till someone tells me otherwise!

    Sue

    X

  • Hi Sue,

    That is a very simplistic view, I think that either you have cancer or you don't scenario is true if you have not had a recurrence.....as I am now in remission for a second time, my oncologist insists that I have a "progressive cancer", but I do think the goal post changes when it is a recurrence ie the first time you are diagnosed they can't tell whether it will come back or not (so it could be a cure) but after a recurrence the disease has progressed (and will not go away) but the hope then is for a long remission (but realistically you still have cancer)....love x G x

  • Dear Sue

    It just shows how difficult the oncologist's job is as each of us is so different. I'd be horrified to be told I either have cancer or I don't. For the most part I have my head in the sand and whilst I'm fit and active I try not to dwell on the cancer too much. I think my oncologist gets very frustrated with my attitude and wants me to be miserable.

    I threw away my hospital visiting card at some point last summer. It was just a reminder of the hours I'd had to waste in hospital. When she asked for it to add a new appointment I told her I threw it away when she cured me last year. It was meant to be a joke but she didn't see it that way and gave me a lecture on my cancer being incurable .... as if I didn't know !!!

    I should seek an oncologist through a Lonely Hearts type ad - Female with Ovarian Cancer WLTM optimistic oncologist with GSOH for reassuring hospital visits and lots of laughter.

    love Annie

  • I don't think they exist Annie. My surgeon was mr optimism, my oncologist always looks miserable until she is leaving the room of course. She was quite blase when I asked how I would be monitored, she said as there is nothing to look at, whatever we think at the time, it's difficult with you, nothing on the scans and the bloods were normal, as if it was my fault lol.

    I wonder how happy she will be next week when I tell her my plans.

    LA xx

  • I am nearly 5 years and have never once had the word remission said to me... optimism is in short supply but at my last visit nearly a year ago my oncologist did say 'no-one can say for definite but there is a good chance now you will be OK'.. that is the best I have ever had in all the time I have seen her. A woman at work said to 'but you are in remission aren't you'.. and I honestly didn't know what to say.. no idea.

    Gilly x

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