Confused yet again 😦😢

Hello ladies, 

So I had my surgery in Feb and the surgeon has signed me off, in the last meeting he said there was no residual disease. I thought this meant no more cancer. Unfortunately my oncologist doesn't agree, she said I am still stage 3 😕 I really don't understand this. Does this mean I still have tumours?????

Also my CA125 was 17 pre surgery it is now 23 😕 

I spoke to my specialist nurse and she said it was not a cause for concern as it could be due to the swelling/inflammation from my surgery. 

Am still worried. 

Any advice or similar stories welcome 

Thanks 

Asma 

8 Replies

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  • Hi Asma

    I think that from the surgeons point of view all visible disease has been removed which they call NED. No evidence of disease.   The staging and grading of your disease will have been made at the beginning  on diagnosis usually after biopsy and doesn't change at the end of treatment . Don't worry too much about your ca125 its still settling down following surgery like your CNS said. 

    Kris x

  • Thank you x

  • Hey Asma,

    As peanut said I don't think the outcome of surgery actually changes your diagnosis. 

    My CA125 has always been in the normal range and it looks like yours are too (0-36) My onc told me that because of this it's not a reliable marker for me and that I shouldn't really look at it at all! I have also read that many things can cause an increase in CA125 and peanut and your nurse are right this can include inflammation from your surgery! 

    It's fantastic that you have an NED post surgery diagnosis enjoy that and take each day as it comes! 

    Onwards and Upwards!! 

    Dxx

  • Hi,

    I'm still considered to be stage 1C even with a recurrence as it's isolated to the same place. During remission was also regarded the same even with NED. My CA level was 18 post surgery in November then in March it was 21, the only one freaking out was me. Will be more disturbed if it goes up again, but meantime have to listen to the ones who are used to the fluctuation. I suppose if I was an oncologist I'd be going, no don't worry. My oncologist said she had seen people with levels in the thousands with no active disease.

    LA xx

  • No residual disease is a great result from surgery.  Women who have no residual disease usually do very well.  Your CA125 will have risen because of the surgery.  Mine usually takes a couple of months to settle, yours is probably similar.  The stage is based on the extent of disease when you're diagnosed, it doesn't change - unless during surgery it's found to be more extensive than on scans.  I know it's hard when so much mental capital is invested in the CA125 value, but I think you should be very pleased.  Vx

  • Hi, the staging given remains.  Stage 3 is regarded as advanced cancer unfortunately.  I too am stage 3b.  My surgeon managed to remove all visible disease too.  He told me I would have to have chemotherapy.  I was given a CT scan the day before my chemo started and some cancer had started to grow again albeit very small, just cells.  I had my surgery June 13 followed by chemo.  I'm now going through chemo for a second time.  It will return when stage 3, its just when that nobody can predict.  Its different for us all.   Try not to worry, take the treatment and go on and live your life.  Stay positive too, I think that's vital.  

    Ann xo

  • No evidence of disease is a great result, so upwards and on wards, if you have any worries, do contact Ruth the Ovacome nurse or your team. Best of luck for a long remisson

  • thank you for your responses ladies. I'm due to start work on Monday so hoping I will have less time to stress. 

    Thanks x

     

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