I know this is a difficult topic, and a scary one as well. Would anyone care to share their experience with recurrence: how did you find out, timeline, how you are dealing or have dealt with it, what treatment and/or surgery was prescribed for you, any advice you would share, etc. 


  • Hello,
    I had my first recurrence in 2014, 18 months after chemo  treatment and debulking. I had to have 6 more chemo treatments. Eight months went by and my second recurrence occurred. Back for 6 more rounds of chemo. I started on olaparib in April 2016 and the cancer is currently stable. The chemo knocked me on my butt each time. 
  • I'm glad it's stable now @birdee   What is the olaparib for?
  • I had a recurrence in January 2017.  I had ascites develop and went to my GP.  I had a CT and found it had recurred.  Went for chemo and it is clear again.  Now monitoring.  Doing OK.
  • I had recurrence in May 2017 just 7 months after my front line treatment was done. It started in my lungs just like the first time. I was devastated that it came back. I have just finished 18 weeks of chemo with Carbo/taxol and my last CA125 was back down to 15 (was 2,000 in May). I'm booked for a CT scan in October and see my oncologist on Oct 30th to see if I'm NED again. How do you cope with the constant worry about recurrences? I feel that each recurrence is one step closer to my death. I am a very positive person and I really feel like I've beat this again but there are times when the worry gets the best of me.
  • I was diagnosed in April 2014 and had surgery,debulking and IP and IV chemo with carbo/taxol.A year later I was experiencing reflux and back pain.The Drs put me on Tamoxifen to see if it would stabilize.Six months later I started carbo/caelyx.Both chemos I did fairly well with mixed responses.and very little side effects.Seven months later I was on  chemo again! On Gemcitabine this time.This has been hard this time Everyone reacts differently.My mid treatment CT showed mixed response  again which gave me encouragement.Awaiting a followup appt.I am one of those people who needs to know exactly what is what.Something I find some Drs feel is not necessarily positive.A second reoccurance was hard to get my head around so soon after my first  but I will take any positive thing.After all this my symptoms of reoccurance have been the same ,usually indigestion,reflux and back ache.You have to be aware .
  • Thank you all for sharing. This recurrence is so hard to wrap your mind around. This has been the difficult thing for me also. I keep wondering how will I know... yoga, activities and doing what you can that makes you happy has helped keep the mind at ease. It is those times when the worry seeps in that are difficult. 
  • Hi Flowergirl. You will know when your CA 125 levels climb beyond normal. My Dr uses double the high normal (30) which is 60 as threshold for trouble and a CT scan confirms it. Symptoms follow- bowel changes are one marker.  Pain, gassy, constipation, narrower diameter stools. It depends on where tumours are growing and what organs they impact.  I have lung and liver tumours but no symptoms from them at all. Yoga changes over time is a good way to tell. You'll know if your twists etc make your tummy feel more bulkier, painful, etc. than usual. If you have a remission they  retreat it with chemo. 
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