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CA 125 normal can fluctuate?

28 replies

Worrierrs · 30/08/2024 06:51

If you had CA 125 test last year 11 and then when retested a year later for another non related issue it maybe goes to 22 but still within a normal range, does it mean something is happening?

OP posts:
Worrierrs · 30/08/2024 06:53

The person being tested is 50 years old and now stopped her periods since New year.
When tested in the last year, periods were still coming but irregularly.

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Zerro · 30/08/2024 15:22

I have had CA125 tested several time in the last year and it does fluctuate. Mine is abnormal and between 50 and 70.
The gynacologist told me that CA125 is useful to measure the progress of known ovarian cancer patients but if you don't have ovarian cancer it can be raised for all kinds of reasons. Basically anything abdominal so bladder or bowel related, UTI, constipation etc.

Worrierrs · 31/08/2024 10:47

The result just came back as 17, while it's still in normal ranges, it increased since a year ago when it was 11.
Is that normal? I'm confused as it seems going up, getting very worried.
On the nhs app it says normal, no action required but it's it higher than last year.
Shall I think something is happening?

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Saddays · 31/08/2024 10:49

I read that Ca125 can be increased by regular drinking of coffee.
So if you had coffee before the test, it might contribute?

Worrierrs · 31/08/2024 10:52

I had 2 coffees the evening before the test.
I'm so worried now, I still have some bowel issues like mucous in poo.
I had private scan on ovaries/ womb this week and it was ok, probably reaching the menopause soon the Dr said..

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Zerro · 31/08/2024 11:01

17 is well below the range of normal. Over 30 and they might investigate routinely but not urgently. In the 100s and they might suspect cancer.

Saddays · 31/08/2024 11:06

@Zerro thank you.

Worrierrs · 31/08/2024 11:08

So even if it goes up like it while in normal range it's ok?
Shouldn't it be same? It just moved up.
#worried

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Zerro · 31/08/2024 11:15

Worrierrs · 31/08/2024 11:08

So even if it goes up like it while in normal range it's ok?
Shouldn't it be same? It just moved up.
#worried

Yes.

Worrierrs · 31/08/2024 14:11

Thank you.
It's just my health anxiety nagging me, why it jumped from 11 to 17.
Also I can't find a single article on Google if normal ranges can go up or down within the range like any other blood test.
I had a private gynecologist transvaginal scan and all was apparently normal, no cysts or polyps. But someone dismissed this saying it's impossible to see anything like that without having CT or MRI.
If I would contact my GP about this Ca125, I can't imagine they would entertain any further tests as it says No Action required on the result.

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Worrierrs · 31/08/2024 14:14

I'm just worried that being these getting raised up, it means some other cancer is growing somewhere especially I had some heavy bloating and mucous in poo lately.
I read tgat the test would raise with Bowel, breast, uterine, pancreas, lung cancers too.
Here we go, I'm so stressed can't even think straight.

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littlebox · 31/08/2024 14:24

I've had 3 ca125 tests this year because the first one was raised and I had a private test while I was waiting for the nhs. All three test results were different, the second was the lowest but only the first one was over the normal limit. I have had scans and there's nothing worrying on my ovaries.
It's a marker of inflammation and can be affected by lots of things. The oncology nurse I saw said it was probably because the first test was in the middle of my period so she arranged a test mid cycle and that was normal.
Try to stop thinking of it as increasing and see it as two separate results, both well within the normal range. If you were to be tested every day for a month you would see the level going up and down. It's not on an upward trajectory it's just that of the ups and downs that happen all the time you happen to have been tested last year in a trough and this year in a peak.

Pipsquiggle · 31/08/2024 14:25

Really interested in the comments here.

I have had consistently very high CA125 levels for over a year 60 to 130. Now at 70.

Lots of investigations but found nothing sinister. Consultant has suggested a hysterectomy due to relatives having endometrial cancer and breast cancer. It just seems a bit drastic.

I hadn't realised that coffee affects levels - I have coffee everyday.

Pippifer · 31/08/2024 14:29

Yes it fluctuates based on your cycle - I had to have a few tests for CA125 and it’s a nightmare trying to arrange the appointment.

Mine was the low 30s and I have endometriosis. I understand if cancer is present it would be much higher, into the hundreds.

Worrierrs · 31/08/2024 14:33

littlebox · 31/08/2024 14:24

I've had 3 ca125 tests this year because the first one was raised and I had a private test while I was waiting for the nhs. All three test results were different, the second was the lowest but only the first one was over the normal limit. I have had scans and there's nothing worrying on my ovaries.
It's a marker of inflammation and can be affected by lots of things. The oncology nurse I saw said it was probably because the first test was in the middle of my period so she arranged a test mid cycle and that was normal.
Try to stop thinking of it as increasing and see it as two separate results, both well within the normal range. If you were to be tested every day for a month you would see the level going up and down. It's not on an upward trajectory it's just that of the ups and downs that happen all the time you happen to have been tested last year in a trough and this year in a peak.

Thank you very much, yeah that's what I was first thinking tgat the results could fluctuate like any other blood tests ( for example my full blood count tests are everytime different results but still in the normal range) but all I could find with this test is that going up means no good.
Can I ask what levels were your 3 tests?
I had no period when taken it in none of those tests, in a fact I had no period since April ( perimenopause)
The Gyno Dr I saw this week mentioned that I probably won't get period now as approaching menopause..
When I had the first CA 125 test last year in March 2023 I was still getting periods but irregularly, not while had the test.
I also read that some people have value of 3-4.
When I had value of 11 last year I was happy as I thought its well below the 34 cut off..

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Worrierrs · 31/08/2024 14:37

Pipsquiggle · 31/08/2024 14:25

Really interested in the comments here.

I have had consistently very high CA125 levels for over a year 60 to 130. Now at 70.

Lots of investigations but found nothing sinister. Consultant has suggested a hysterectomy due to relatives having endometrial cancer and breast cancer. It just seems a bit drastic.

I hadn't realised that coffee affects levels - I have coffee everyday.

Yeah. I was surprised about the coffee if that's true, also I read about being dehydrated affects ut too, not sure how.. Which I am daily dehydrated as I'm really poor liquids drinker.

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Worrierrs · 31/08/2024 14:42

Pipsquiggle · 31/08/2024 14:25

Really interested in the comments here.

I have had consistently very high CA125 levels for over a year 60 to 130. Now at 70.

Lots of investigations but found nothing sinister. Consultant has suggested a hysterectomy due to relatives having endometrial cancer and breast cancer. It just seems a bit drastic.

I hadn't realised that coffee affects levels - I have coffee everyday.

.

CA 125 normal can fluctuate?
OP posts:
Zerro · 31/08/2024 15:24

Mine was 61, then 69 then 50. I've had two ultrasound scans a year apart which were normal and a CT for something else also normal.
I had some minor bowel problems and the gynaecologist said that could have been a reason for raised ca125. IBS can raise it. Constipation, diarrhoea as well as UTI.
I had colonoscopy to check bowels and all ok.
I have a history of breast cancer.
The gynaecologist I saw last week says they will just continue to monitor it every few months but they are not concerned as if it was cancer it would not fluctuate it would just keep rising
.@Pipsquiggle that does seem drastic.

worldwidetravel2017 · 31/08/2024 15:31

It can be raised in endometriosis patients

Also dont do the test when u have your period.

I had it tested a few times last year as was abnormal but below 100

My ovaries were scanned last yr.
And this yr

I have ibs
And pcos

I also have a bowel that makes polyps hence had few colonoscopies..

I also have a liver condition or two.

Inflammation is common in pcos

Fatty liver is common in pcos patients

It can also be high ca125 in breast cancer patients

littlebox · 31/08/2024 16:05

@Worrierrs I think they were something like 48, 11 and 17. I only got the oncology referral because of a bit of a mix up, normally a slightly raised level isn't even that much of a concern apparently, they just retest. Your result was completely normal though!

Worrierrs · 31/08/2024 16:37

littlebox · 31/08/2024 16:05

@Worrierrs I think they were something like 48, 11 and 17. I only got the oncology referral because of a bit of a mix up, normally a slightly raised level isn't even that much of a concern apparently, they just retest. Your result was completely normal though!

Hi, I know it's in normal range but i have this anxious niggling why it went higher 😳 I frantically goggling like mad, thinking to retest or buying some test online .
Oh well! I suppose I was expecting the same number 12 or so!
I'm just hoping it just went up for some silly reason like being dehydrated or drank too much coffee the day before!
Also I slept like 3 hrs before the test as came back from abroad at 3am ( the test was at 10am - got up at 6am)
clenching to impossible really..

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AnnieMcFanny · 31/08/2024 17:00

Pippifer · 31/08/2024 14:29

Yes it fluctuates based on your cycle - I had to have a few tests for CA125 and it’s a nightmare trying to arrange the appointment.

Mine was the low 30s and I have endometriosis. I understand if cancer is present it would be much higher, into the hundreds.

Edited

There Is a particularly rare type of ovarian cancer that doesn’t necessarily raise the CA125 significantly at all. It’s called mucinous ovarian cancer and it’s what I had. My CA125 was just a few points over normal and in my case my cyst weighed almost 6kg but other people can have MOC and have a regular sized cyst (till it continues to grow). Even when chatting to my surgeon just before my surgery she said - We’ve not seen anything yet that alarms us. After my experience I would always urge women to have follow up tests to even a slightly raised above normal CA125. Thankfully my cancer was caught very early and the huge surgery I had was enough treatment for my stage 1a.

JellyBeanFactory · 31/08/2024 19:43

Pipsquiggle · 31/08/2024 14:25

Really interested in the comments here.

I have had consistently very high CA125 levels for over a year 60 to 130. Now at 70.

Lots of investigations but found nothing sinister. Consultant has suggested a hysterectomy due to relatives having endometrial cancer and breast cancer. It just seems a bit drastic.

I hadn't realised that coffee affects levels - I have coffee everyday.

Mine is similar, usually around the 70 mark. I've had many scans and nothing found. I do have diverticulitis which consultant said was most likely the cause.

GP never includes CA125 in blood tests now (unless obviously symptomatic) as it just causes worry. The level of 70 is now seen and recorded as my normal baseline.

The senior gynaecologist I saw last said CA125 is a useful test once diagnosed with OC (and is then usually in the 1000s) to see how treatment is going but shouldn't be used as a diagnostic test.

I know there will be exceptions to this advice but this is the most common.

Worrierrs · 31/08/2024 21:51

Just found out I have UTI, had a funny feeling down bellow today also went for pee too often today but not had that burning pain or anything.
I got these self testing stripes from amazon as had quite few UTIs lately, so decided to test, showed lots of white cells in!
Also two weeks ago when I saw GP for the period cramps ( no bleeding) they tested my pee and found blood in it, without any other symptoms but I was given antibiotics for 3 days.
I wonder if this could increase the Ca125 yesterday, however had no any symptoms yesterday yet but maybe uti was brewing already??
Anyway I got an emergency antibiotics here for UTI so started taking them.

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Worrierrs · 31/08/2024 21:53

Oh the happiness of perimenopause! I used to suffer from UTIs when young but that stopped for good 20 years and suddenly since last year i had 3 or 4 UTIs.

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