Remission? But she's not dancing with NED

Remission, but no dancing with NED

My mum finished her treatment for stage 4 ovca 6 weeks ago, 4 rounds of carbo/taxol, optimally debulked and 2 more chemos. She had a scan last week and today was the big appointment to tell us the results of her scan.

Im so confused by what they said. I was hoping against all hope that they were going to say "congratulations you are in remission and there is no evidence of disease" ... It wasn't to be

To cut a long story short they said that there is "nodularity of the omentum and peritoneum"  which they said means that on the scan her omentum and peritoneum  don't look normal but they can't tell if it is scar tissue which is possible but it is more likely that it is cancer cells that are left, although there is nothing big enough to measure, its just irregularities. There was also a lot of talk of lymph nodes, and again they are not sure anther these are normal size or not but they are smaller than they were at diagnosis. However her ca125 is 17 so they say that anything that is there is dormant and that apparently is good.

I have been so strong for my mum for the last six months, but today I just cried my heart out when we were there.  They say she is in remission but how can this be when they can still see things on the scan.  I think maybe they were trying to make us feel better by saying that some women they have in their care  have had 1-2 years remission with similar circumstances to my mum although it is just impossible to tell how my mum might do.  

I am so very low, I love her with every last piece of my heart and the thought of not having her with me is utterly unbearable, I am desperate for some advice, encouragement and similar survivor stories. Is she in remission? Is there no hope without NED? My heart is broken, please help xxx

3 Replies

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  • A bit of re-thinking:

    Your Mum IS in remission (a positive point). This is a platform from which she can make decisions about ways in which to try to maintain that status. 'Remission' means no active disease. If there is still disease there (which there might not be), lifestyle might be a powerful tool in keeping it inactive. Remember; we ALL have cancer cells circulating in our bodies - it's why they grow in some of us in certain circumstances, that is the key, and that will be partly a very individual reason to your Mum.

    She has a very low ca125 (a positive point).

    As you were told it IS impossible to tell how she will do - so she MIGHT walk away and not be ill again.

    Worst case senario; she remains in remission for some time, then her ca125 starts to rise and scans show active tumours. Firstly; depending on the time elapsed, other treatments might well be available, or carboplatin might even get her back into remission for a further period.

    Even if she had had a 'no evident disease' diagnosis today you had no way of knowing that she would not have a recurrence. None of us have a guarantee, sadly.

    This might sound harsh, and I don't mean it so; but this is your Mum's life and illness, and you have to detatch yourself a little more. You have your own life to lead. You have been a tower of strength for her, and now she has reached a positive place (which she definitely has), it is time to focus on other things and not let her cancer ruin both your lives. Now is a huge opportunity for both of you to enjoy time apart and together. There are no guarantees for ANY of us (cancer-touched or not), that we will live long lives - nothing certain but death and taxes, remember. Start looking into a healthy future, and push the fear of recurrence out of the way- it will just ruin the good things.

    VERY best wishes to you both,

    Isadora.

  • wow...what an incredible reply.....so sorry fly high.........but Isador's reply is a v sensitive and thoughtful one......I have just had relapse and started chemo on Monday...going through the first few days which are difficult...but try and focus on the life that we do have, not what we don't. good luck..love to all xxxxx

  • After my surgery for stage 3c the follow up scan was also a bit ambiguous. They were uncertain if I still had cancer on my diaphragm. Unfortunately they told me this like your mum and I spent the next few months worrying. Turns out it was not cancer but scar tissue. I have a recurrence now in a lymph node which didn't show on the initial scan but it has been there for a few months and is not doing anything so I am being rescanned this month. If you can try to feel your way through this - does your mum feel ok? If so I really would suggest living life like she is cancer free and trying to keep the fears at bay because it may well be scars etc and it's now her turn to take control with her diet etc. whcih makes a huge diffe3rence.

    Good luck

    Jane

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