CA-125 Test Results

[Lgottenbos56]

My name is Laurie and I have been diagnosed with Stage 3 High Grade Serous Ovarian Cancer. My treatments will involve 3 rounds of carboplatin/paclitaxel then debulking surgery then another 3 rounds of carboplatin/paclitaxel. I might have to have up to 8 rounds in total. I've read up on a lot of information but the one I cannot figure out is the CA-125 blood test. My first test was 65 and 5 weeks later prior to the chemo my number went to 97. I see ladies with numbers in the hundreds and even thousands. Does the lower the number mean the less cancer you have?

[Lily-Anne]

The number means different things to each of us. I was within the normal range at diagnosis. In some hospitals that’s 0 - 35 in others 0 - 30

CA125 is Cancer Antigen and usually refers to the amount of cancer protein being excreted from cells. Not everyone finds this a reliable marker. Clear cell usually has low numbers so does borderline or stage one.

You are outside the normal range but it’s not enough on its own for a diagnostic tool. Some places also use HE4 test. The only real

Conclusive answer to where you are is through histology

LA xx

[January-2016-UK]

There doesn’t seem to be much correlation to the amount of disease one individual has with a very high value compared with another who has considerably lower value. Over 35 is an indication that further tests need to be carried out but as LA says, some types of OC do not display such values. One use of the value is when looking at the trend in a particular individual. If the value is going down then this is a non-invasive way of indicating that treatment is working and can be done my frequently than scans.

On initial diagnosis I had a value of 1250 and like you had three cycles of chemo (actually four) followed by the op and then two more.

Good luck with your treatment and welcome to our group.

All the best!

[Lgottenbos56 in reply to January-2016-UK]

Thanks so much for your information. Can I ask if you remember having pretty painful pelvic pain 48 hours after first chemo. I'm not sure if it is constipation or a side effect if the chemo drugs. It's like sharp stabbing pains.

[January-2016-UK in reply to Lgottenbos56]

No, I didn’t have pelvic pain. I had extraordinary pain in my ankles up to my knee, how I imagine electric shocks might feel. I also thought I was walking on razor blades. I did have severe diarrhea for several days and also constipation for some days but not accompanied by pain. You could give your CNS a call for advice. We seem to get different side effects so it may be normal.

Keep a diary of what happens because it’s likeky that if say you get diarrhea on days 5 and 6 that will happen each cycle. It helps with planning outings etc.

[Janet235]

This is the tricky one and it is only over time you and Doc will know if it is significant or not to you. For me highly significant

I was around 3400 on diagnosis. After same round of treatment and the operation as you will have it settled to its lowest figure for me of 200+. ( ( I never got lower again on any treatment). Always recurred after2/3 months and always CA numbers rose which along with scans showed disease was on rise again

All the best janet 🌈

[grammeejill]

Hi! I was diagnosed with 3b high grade serous 3 years ago and my CA125 was only 45 at diagnosis. After debunking and 6 rounds of Carbo/taxol it has stayed steady at 6. My doc decided to stop taking the test. He feels I should monitor symptoms because he feels it's not a great marker for me. But the again, I never had any symptoms prior to diagnosis. My cancer was found during a hernia operation. So I am left a bit confused as to how I would know I am recurring.

[Lindaura in reply to grammeejill]

Although it’s been 3 years, because you felt no symptoms the first time round, I would ask my GP to give me the test every 6 months.

Even with a low number, the clue seems to be its doubling over a brief period, so if next it is 12, have a test 3 weeks later, and if it is 24, see your Oncologist.

Best wishes,

Laura

[Lgottenbos56 in reply to Lindaura]

Very good advice. Thank you

[bamboo89]

In many of us, it doesn't get that high - before diagnosis, mine was 91, dropping to 86 two weeks later, and it turned out after that I'd got Stage 4b epithelial serous OC which had differentiated into non small cell neuroendocrine cancer. So when the reading dropped to 86 6 weeks before my investigatory CT scan, I had a 5cm tumour on the pelvic wall, cancer in the ovaries and in the inguinal lymph node as well as spots spread over the omentum and the outside of the bowel. So much for the CA125.. the highest its been is 99 after surgery, so obviously, the count of it does not reflect how much cancer you actually have. Mine recently went from 15 to 36, and then down to 23 again...I'm 9 months after surgery and not having chemo. But as guides go, it is just a vague guide... but I'm happier when it falls than when it rises! Oncology team tells me they watch the overall trend of the CA125 rather than the actual numbers.... so if it rises, and particularly keeps doubling, they're concerned.

[Maus123]

Welcome Laurie. Sorry about your diagnosis but hopefully you will find some comfort in this community. I know I do.

Agree with the other ladies on the topic of CA125 values. It just varies from person to person. You will find out over time whether yours is a good indicator of disease activity (actually, I hope you won't have to find out.. but just in case), and what the associated number range is for you. E.g. I know mine is fine as long as it hovers around 100 (which might cause panic in others), but the disease might be on the move once it rises rapidly, to 150+ .

All the best with treatment and hope to hear from you how you get on. Maus