rising ca125 with clear PET scan

Hi, i thought I just posted this question but I cant seem to find it.  I was diagnosed with stage 4 clear cell carcinoma with a ca125 level of 3900.  after chemo i was in complete remission, my ca 125 levels have recently gone approx 7, 14, 26 52, 130.  I have had a ct scan and Pet scan and both are completely clear, have you ever seen a rising ca125 like this with the patient still being in remission?

[PF_PVD]

I had a rising CA125 with clear PET/CT and CT scans of my abdomen, pelvis, chest, and brain with no evidence of disease a month after finishing chemo.  My onc said I was recurring, but he didn't want to start chemo again until scans or an exam showed something or I had symptoms.  I was feeling good at the time, so I agreed.  In a very short period of time I went from that to my gyn/onc feeling nodularity on a physical exam, lots of symptoms and when I ended up in the hospital, a CT scan showing lots of disease.  I started chemo immediately.  There are people on here who have elevated CA125s but they feel fine, and I think that is the key.  I believe studies show that restarting chemo early does not prolong your survival time, and I would prefer to not be treated as long as I am feeling good so I can enjoy that feeling for as long as possible.  I assume you're under the care of a doctor, so what does your he/she say?  Good luck to you.  Paula

[shaline15]

Hi Paula,

Thanks for that.  I feel fine pysically, its just the worry emotionally.  I can not believe that it has come back and I thought a PET scan was really reilable.  I live in NZ and find the oncologists to be very negative, during my chemo they told me that I could not get into remission and I did.

[PF_PVD]

Yes, the worry is hard.  My onc called it watchful waiting but I called it watchful worrying.  I had just gotten to the point where I was doing pretty good at enjoying the day I was in and not ruining it by worrying about tomorrow.  But then I found out that's not too hard to do when you're not in pain, but pain changes everything.  I hope you can feel well before the beast raises its ugly head.  And, it may not.  As I said, I know at least one person here lives with a high CA125 and enjoys her life.  My CA125 only made it into normal range at my sixth treatment and I only had one more normal after that.  It went 12.8, 13, 50, 64, 164 within about two months. The jump from 50 to 64 happened in just 5 days.  Who knows how high it is now.  Paula

[msjazz]

My ca125 started rising about 6 months out from my first chemo. I had a clear petct in Aug. 07. I had a bowel obstructed by an adhesion in Oct. The gyn/onc did not see any visible cancer, but the pathology slides did show microscopic cells. I started back on chemo in Nov., ca125 went from 265 to 33.    Donna

[Kimchi]

My problem is the opposite,,,,CA125 well below 15 but CT scan shows a mass and my doctor wants me to start up the chemo right away.