My CA125 count is rising very slowly - just one per month - but I wondered what can be causing it to go up. I had a full hysterectomy, ovaries, fallopian tubes and uterus along with the omentum removal in May 2016. What other bit of me is making more CA125 if it's not a recurrence?
My consultant is not concerned but I'm curious. No other symptoms and NED at my last CT scan in October 2016.
Diane
Wish I could answer that question. If consultant not worried and CT is clear I would not worry too much at this stage. Anything under 35 is apparently ok so I understand.
The reference range is under 35 however there are apparently approx 5 to 10 % of ladies (me at initial diagnosis - my CA 125 was only 30) who never had a raised level and who do have cancer and also the same % (so I understand ) who have a very raised level but do not have cancer.
That is why this is NOT a diagnostic test, but is purely an indicator that works well for the majority of people. It has to be usually used with other tests.
Generally there are other indicators which is why all the other tests and scans are carried out.
Post treatment it can rise for many other reasons and that is why the TREND is followed but not for a small rise of 1 point, usually also over three rises etc.
I found this some time ago which seems quite sensible and well explained. It's just a shame that some of our doctors etc don't realise that a better explanation would help us to understand What and Why etc,
foundationforwomenscancer.o...
It's also worth knowing that a larger rise WITHOUT symptoms also doesn't necessarily mean that it's back.
My personal experience - my CA125 was only 30 at diagnosis (March 2016 clear cell )
It went to a low of 13 for one chemo session then:
It went to 21 (Nov 2016) then retested 39 (Dec 2016) but clear CT and NO symptoms
25th Jan 2292 and MASSES of symptoms.
It's hard to adjust to our new norm, however after treatment you have to try to embrace the new norm and live your life aware but not paranoid.
Thinking of you,
Clare xx
Diane, my CA goes up and down a few points. It went up a few points after a major surgery and down after I took antibiotics for a UTI.
Hi Diane. This is happening to me too. I've been in remission (my 2nd) for around 20 months, with avastin as a maintenance drug. My CA125 has hovered around 9 for most of that time. About 6 months ago it began to rise by just one point per blood test. My onc, like yours, is unconcerned. But a glimmer of good news is that last time the CA125 went back down by just one point !
When my OC returned last time, it had only reached 19 but I had a swollen lymph node in my groin, so it was clearly back. My onc said that my CA125 had become unreliable. You probably know that oncs really aren't fond of CA125 as a diagnostic tool as it is notoriously unreliable. But you get to know what seems right for you and if you move outside what you consider to be your personal boundaries, you can become concerned.
Your question has come up on this forum a couple of times before. Responses have said that sometimes the re-growth isn't visible on CT scans until a couple of times later.
Of course, I am still well within the safe range but it's uncharacteristic for me, so can't help but be concerned. As is oft-repeated here, we are all different. CA125 ranges for one person will be different for another; rises & falls may be perfectly normal for some people but not for others.
My onc hates to be questioned about CA125, so I keep quiet. He says (and rightly so) that CT scan trumps blood test, so I'm trying not to worry. As Clare said above : be aware but not paranoid.
I hope it ends well for us both. Best wishes. Pauline.
My oncologist agreed to let me have a ca125 this week-just before my 3rd dose of first line chemo-but he said it would not mean anything and would be of no use as a diagnostic tool at this stage. It was 67 at diagnosis. Hope to get the result tomorrow.
Hi Diane,
Wouldn't worry as you are under normal level,onc not worried,being monitored ect.
It isn't always a marker for everyone and things can cause it to rise like infections,colds,high temperature.The important thing is it isn't high and you are being taken care of.
I would enjoy life,if you feel well and try not to worry about what may not happen.Just go for your check ups and put oc on the back burner.Good advice, but it has taken me 2 years of NED to get to that place!!
Hope it takes you less,
Love Carole xxx
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CA125 Rising Even with Chemo
