Raising CA 125; at what point should one be concerned?

[Rosalita20]

CA 125 raising gradually from 3.5 to 4 to 6 to 7 to 8.5 and now 11. Is it indicative of a recurrence?

[Marieck]

I am sure seeing the number rise is stressful my ca125 went up from 7 to 8 and it definitely stressed me a little because at the time of diagnosis my ca125 was only 28. my understanding is that it could be but not necessarily as other things can cause the number to rise. Do you know how high your ca125 was when you were first diagnosed ? If it was low then small increases have more significance but if it was very high I believe small increases are not as significant. I think it’s important to have other types of monitoring to rule out reoccurrence like scans because you can’t rely on ca125 alone. It can rise for other reasons so it does not always indicate reoccurrence….hope that helps my recommendation…get a scan

[Jennifer1959]

Hi Rosalita

What has your oncologist said about this? It is still very much well within the ok zone though - anything over 35 is something to look into. What was your CA125 like before your diagnosis? So many things can cause this to rise as well - so its not necessarily a recurrence (although its natural to worry about that I think). x

[OrdinarySoul]

hello - I really get this! My last three were 9, 12, 14 and I was really concerned. My consultant never seemed to worry and kept saying it was within limits but I didn’t feel better until it was 11 at my last test. I know that we all know it could be anything that causes the fluctuations but it’s so stressful and I remember thinking well if it is a recurrence then you’ve just ignored it for 6 months. My next one is next month so I’ll be back on that train again. Try and feel reassured by your team but it’s really really hard to do that! Sending love and wellness xxx

[Ydaff]

Hi Rosalita20

I am in a similar situation, in that my CA125 has been slowly but steadily rising over the past year from 3 at the end of my chemotherapy (after 1st recurrence) to 10 currently. My oncologist wasn’t concerned, but I asked for a scan, as it was only 21 when I had the recurrence. The scan showed that the residual small tumours had increased by a tiny amount. My oncologist says that the Niraparib that I am taking is slowing down the progression and the increase so small and so slow that he doesn’t want to restart chemotherapy yet. I have to have another scan in 4 months. I guess what I’m saying (in a very long winded way 😆) is that you should ask for a scan as , like me, your CA125 isn’t a good indicator. The rise may be nothing to worry about, and the scan will put your mind at ease, but if it should be a recurrence then you and your team know, and can fight back (again). Good luck; I hope you’re worrying unnecessarily, but it’s best to be sure.

[Bookclublover]

I agree with Marieck - much depends upon your CA125 score at diagnosis. Mine was still in double figures- 85- yet I had stage3 disease.

A friend has watched her CA score increase by one third every month- it’s now sitting at 300- which sounds pretty scary to me. Scans in Jan and April confirm that she is still NED. However her score at diagnosis was over 800, so I guess 300 is low for her.

Sorry, this is a longwinded way of saying everyone is different and you need scans alongside the blood test. Your score is still very low, so hopefully something else at play. ❤️

[Leo2327]

Good morning everyone when I first got diagnosed my ca125 was 3500 I am 3c ovarian cancer I have had 2 major surgery and chemo and 18 infusions and now on maintenance lynparza tablets last scan was clear my ca125 is always around 11 and 13 I also have a stroma I am quite well in myself but still get very tired I am 64 yreas old but not got alot of energy which does worry me I suffer with really hot sweats since operation I would not worry about your ca125 cause it still very low take care everyone

[ARamage]

Same as what the others have written. My at the time of my last surgery, my CA125 was 32. After surgery, it dropped to 11. A very small tumor was removed. It had not spread. CA125 went down to 9 then 10 where it held for a couple of months and now is at 14. Talked with my doctor today and was assured that the CA125 can go up and down. He said they were not concerned unless it doubled and tripled. It is unsettling, but I'm scheduled for a CT scan with contrast in June.

[Rosalita20]

Thank you so much for taking the time to address my concerns. I saw my gynecologic oncologist’s assistant and it was decided that I should start having the CA 125 test every month instead of quarterly. We will see how much the CA 125 rises and will have a CT scan then to better evaluate the situation. Of course, this is so nerve-racking and does not help my stress level that, in turn, apparently, contributes to have a raised CA125. Watch and wait ….. what a way of living in terror!

Once again thank you for your time and may you be always safe.