HIGH CA125

[JIyer]

My last chemo was in April 08. CA 125 taken the past year has been around 17. It was 33 six weeks back. I got a reading of 131 last week. But I do not have any symptoms and my Gyne was satisfied with the physical exam. Are there cases with high CA125 but no cancer. I have low malignancy type of cancer. The CA125 test will be repeated in about a month. Is rising CA125 is a definite indication?

[JIyer]

Thanks for the response and encouragement.  Do the small nodules need immediate treatment? Anybody tried oral etoposide as a preventive measure? Hopefully the next CA125 reading will come down a bit.

[lucymullis]

It is not unusual for the ca125 to rise for 4-6 months before any evidence of cancer shows  on the scan.  Many docs consider a rise in ca125 for three consecutive times a possible recurrence.  There are differing opinions about treatment at the point where nothing is showing up and no right answer as to when to start.  This is the situation I am in now and waiting to re-scan again in a month.  CA125 went from 11 to 13 to 19 to 80 since December.  I have had PET and CT scans and a nodule less than a centimeter showed on the PET...nothing on the CT.  So, I would suggest you request a PET/CT.  Often the very small nodules do not show up on a CT.  I have no symptons at all.

[JIyer]

I also want to add that I have border line tumor also called low malignancy potential type OVCA. Regards

[JIyer]

Thanks for your encouragement. I do see a gyne-oncologist. All started in Feb 05 with a terrible pain in the right side. A big cyst was removed from the only ovary. No cancer cells found on the removed ovary or the cyst. But the gyneonc did find a few precancerous cells on the oomentum. Part of the oomentum was removed. Pathologists at the hospital and at MD Anderson did confirm pre-cancerous cells. As a precaution I went through six cycles of Carboplatin + Taxotere. CA125 never went higher than 4 during this period. I had the recurrence after a year and few months. The cancer was (nodules) on outside the stomach. Went through 6 cycles of Carboplatin. CA125 came down some and started going up again. Switched to Taxotere (3 weeks on and one week off - 6 cycles). CA125 went down to 17 and stayed around that number until last week (131). I also have ascites and I get it drained every 6-8 weeks. CT scan is clear so far with no sign of cancer. This is the full history.

[marie3B]

Yes, Angie and Kathy have given excellent advice and information.  Insist on the CT and don't rely on a regular gyn to do the exams.  I wish you well.  Marie

[ladyjogger31]

Hi, you have received very good information from Angie and Kathy. My prayers are with you during this time.
Love, Terry

[Angie_Lou]

Would you please clarify for me if you are seeing a regular gyn for your physical exam or a gyn-onc?  Since i was diagnosed with OVCA in 2007, and as most of the women on this forum, we have our physical exams done by our oncs.  So, I was a little confused on that.  FYI: Every time my onc examines me, she does not feel any tumors, BUT, my CA 125 has gone up & down lately.

Since there are various other factors that can increase the CA 125 (such as hormonal imbalance, a cold, etc) at the time the blood test is taken, most oncologists will give the CA 125 test in intervals of a month apart for at least two if not three times to see how the report goes.  If it keeps rising, but not significantly, your onc (i hope that is the specialist you are seeing), may suggest a scan of some sort and then based on that, maybe put you on a hormonal or chemo treatment; which is all based on your OVCA.  Although we all have this horrible disease, we cannot be lumped together.  Everyone is individual to their cancer and how it responds to treatments, etc.

I can only comment on my own experience with my CA 125 levels to give you an idea of how my onc is treating me.  Last year in late Aug (2008), my CA 125 level reached 72 and was above her 'comfort zone' of 35.  As you may have read in this forum, every onc has a different comfort zone.  Some are below the 35 mark and some are at the 35 mark.  I then had a CT done in mid-Sept and the report indicated about 6 areas of 'nodules' less than 2 cm in size.  I was given Tamoxifen to keep me 'chemo-free' but, my number reached 161 after 8 weeks on the Tamoxifen.  Although not a significant number, my onc then decided to put me on weekly (low dosage) Taxol for 6 months. I'm suppose to be finished around mid-May and have another CT taken after my treatment is completed.

My CA 125 number came down immediately after the first couple of months from 161 to 16 in early Feb.  However, it's been on a slow rise since then; 29 at the beginning of Mar (still within comfort zone), and 65 in the beginning of this week (end of Mar.)  I had a bad cold in late-February and that could have increased my CA 125 at that time, but not sure why the number has more than doubled since then.  I see my onc next week, but just received a call this morning that she wants to do the CT scan before I see her.  So, I guess she's being a little pro-active at this time.  Again, every onc is different and bases what the next step will be on the OVCA being treated.  My OVCA was stage 3C, so, I may be much more advanced in my OVCA than you.

Please, please don't panic at this time....your number isn't high enough for that, but I can understand your concern.  The fact you have a low malignancy type of cancer is in your favor.  However, always let your onc know your concerns and let him/her comment on them.  That's what they are there for....to reassure us that our concerns are valid but not to stress over it (stress isn't good for anything), or go forward with what test or exam you may feel comfortable to have done to be certain it's not a definite indication for concern.

Whatever it is that will keep you stress-free, do it.  It's what will keep you sane and let you know where you stand.

My best, Angie

[Kathleen78]

I would think that this rising CA-125 should lead to a CT scan.  It looks like your CA-125 is a good indicator and the trend of your CA-125 is suspicious.  I would insist on it.  

Kathy