Ca-125?: Hi all, For those who are still awake... - My Ovacome

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Ca-125?

Crystalee
Crystalee

Hi all,

For those who are still awake in the UK

this question might be silly but if you don't have cancer shouldn't the ca-125 results be 0?

Mine is 34 which is just under normal.

51 Replies
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It doesn't work like that sadly. The CA125 in my cousin is 58 she doesn't have cancer. It's tenuous at the best of times. For me it's been a good indication of disease but for some it's not reflective at all

LA

Crystalee
Crystalee in reply to Lily-Anne

Thank you for that reply, it's somewhat reassuring to me. I just think of it so differently that someone without cancer should have a reading of 0. I might go back to my gyno and work out why my reading is 34 and just below the normal range? It's really worrying me :(

CA125 measures a protein that is on the found primarily on the surface of ovarian cells and in very small qualities in other types of cells. This is why there is a normal range. While the blood test checks for the protein level, other gynae conditions can increase it, such as endometriosis, PCOS, and ovarian cyst. Since the protein is also found, in extremely small quantities in other types of cells, other random conditions can influence it as well (Such as liver disease, infections, pancreatitis, other types of cancer, and other factors that are currently unknown).

The creation of the protein that CA125 shows is different for every person, since it's creation is believed to be an immune response to a condition. Some individuals immune response is much higher (having a CA125 of high thousands) while other individuals are much lower (no change in CA125 or a small change). I would speculate that the variation among individuals, is one of the reasons that CA125 isn't testing annually in the general public (as a form of prevention).

The CA125 marker in stage 1 OC is only an indicator 50% of the time. While in OC stages 2-4 it an indicator 80% of the time. In terms of other conditions: liver disease is correlated to increase 70% of the time, and pancreatic cancer has the increase 60% of the time.

References:

ovariancancer.jhmi.edu/ca12...

ncbi.nlm.nih.gov/pmc/articl...

Hope the clears it up for you,

Kris x

Thank you for your reply, I think I might need to book to see my gyno again as I'm worried about my results being just under normal. I just feel like someone without cancer should have a reading of 0. I know 34 is within normal range but it's just so close to be abnormal. Should I be worried?

CA125 is a naturally occurring protein, naturally occurring in ovarian cells and in small amounts in other cells. I highly doubt that anyone, regardless of health, has a number of 0.

CA125 can be a great tool for individuals diagnosed with ovarian cancer, but it is highly inaccurate at accessing risk (high "normal" does not equate to a higher risk of oc).

I always advocate to be assertive with your health, so if it would reassure you to have an appointment with a gynae, do it. However, I personally, wouldn't speculate ovarian cancer (even though my mom has it) just based on "high side of normal" blood result. Regardless, do what's best for yourself!

Kris x

Thank you for your reply. I know I am probably just being paranoid but it just frightens me at 22 that I have been tested for OC. I think I might book in to my gyno again to discuss my results, I'm someone who always thinks the worst. I know it is so unhealthy for me but I just can't help it :(

Katmal-UK
Katmal-UK in reply to Crystalee

My reading (in remission) is classed as below 3. my oncologist explained that it was so low they cant give an actual reading and that this was extremely rare anyway so I doubt anyone would actually have a reading of 0?

Congratulations on less than 3! I am curious, if you don't mind, and your remember, what was your level at diagnosis?

From what I read, the protein that ca125 test, is found in smaller quanties within the gi track, so I think everyone would have some level - even if it was unable to be "shown" on the blood test.

Hi it was 389. Never wet higher than 689. 67 at recurrence. X

rosieb7
rosieb7 in reply to Crystalee

Hi please don't be worried but from my experience I would go back. Everyone is different. Mine went from below 10 for 10 years to 34 I was very concerned, Told not to worry as under 35. Had a scan all clear. Discharged me but decided to just give me one more blood test as I left. Unfortunately it had gone up to 65. Went in for laporoscopy and discovered I had a recurrence in peritoneum. I guess I was just unlucky. I hope yours is ok. Hope you did not mind me sharing my experience. Xxx

Crystalee
Crystalee in reply to rosieb7

Thank you for sharing your story, I hope you are ok. I am very concerned with the result of 34.... I don't know how concerned I should be :( do you recommended I get another blood test for my ca-125?

rosieb7
rosieb7 in reply to Crystalee

Everyone is different. I would get another blood test as mine went up from 34 to 65 in a few weeks which is why I was then told by my specialist nurse she was concerned. It will put your mind at ease and it may have gone down. Thinking of you and sending my love xx

Crystalee
Crystalee in reply to rosieb7

Thank you for your advice I think the best option for me is to go back to my gyno and understand my results or do further testing. When your reading was 34 did you have any other symptoms along with that reading?

nanaflo
nanaflo in reply to Crystalee

hello, I was told by my consultant 18 years ago that everyone would have a reading of 5. after my operation and chemo he got my reading down to 8. and told me anything under 30 was normal.

Crystalee
Crystalee in reply to nanaflo

So mine is a reading of 34, you saying that's to high?

Hi Kris, wow!!! you are full of very useful information. I do get confused over the ca 125 but now you have answered all my concerns. Thank you take care Cindyxx

Crystalee, Normal range for CA125 in US is 1-38. Do you have any symptoms? Is there a history of OVCA in your family?

Crystalee
Crystalee in reply to Tesla_7US

Hello, thank you for your response. The gyno wanted check my ca-125 levels as I have cyst in my right ovary that is 36mm and has not been diagnosed yet. Not that I know of anyone in my family having OVCA.

Tesla_7US
Tesla_7US in reply to Crystalee

Crystalee, you are wise to investigate! Get that cyst analyzed and rule out cancer!

Crystalee
Crystalee in reply to Tesla_7US

That's exactly right, so she wanted to test for cancer to rule that out. So I'm guessing with my results I'm clear for that. Can I upload my results and show you?

Tesla_7US
Tesla_7US in reply to Crystalee

C, I am not a doctor, just another ovca patient who happens to currently be in remission. Share whatever you are comfortable sharing.

Crystalee
Crystalee in reply to Tesla_7US

Goodluck with your journey I wish you all the best!! May I ask you, what were your symptoms if you don't feel comfortable to share I totally understand xxxx

Tesla_7US
Tesla_7US in reply to Crystalee

intermittent bloating, very slight, long slow weight gain, very hungry but stomach filled up quickly because cancer pushing on gut, breathlessness, tiredness. Went to 5 different docs. Had TV ultrasound, endoscopy, colonoscopy, had inside of bladder checked out, all docs said I was fine. Read my profile for more details. CA125 786 or so at diagnosis. Currently at 9.

Crystalee
Crystalee in reply to Tesla_7US

Oh wow, so sorry to hear :( so when you had your first blood test for ca-125 was it 786?

Tesla_7US
Tesla_7US in reply to Crystalee

Yes. I was diagnosed in the ER after they gave me a CAT scan. It went up to over 1100 during chemo and then plunged quickly after that. I had breast cancer in 2006. After mastectomy CA125 was 17.

Crystalee
Crystalee in reply to Tesla_7US

Oh wow, I'm so sorry to hear!!! Breaks my heart :( how are you doing now?

Tesla_7US
Tesla_7US in reply to Crystalee

I am great! NED and living my best life.😊

thesilent1
thesilent1 in reply to Crystalee

It is actually common for young women to get cysts on their ovaries that disappear again without causing them any symptoms whatsoever! Try not to worry too much. Ann x

Crystalee
Crystalee in reply to thesilent1

Thank you for your reply, yes I currently have a cyst that has not been diagnosed yet :( it's a waiting game unfortunately.

Sherrym
Sherrym in reply to Crystalee

Ask for HE4 test too plus the new Algorithm test. U may have to pay but available on line if ness.

Crystalee
Crystalee in reply to Sherrym

Thank you for that! Never heard about them before, what do they specifically test for?

Sherrym
Sherrym in reply to Crystalee

Ovarian Cancer

Hi Crystalee, my CA125 at diagnosis was really quite low at 68, now in remission it's been a steady 6 for over 2 years, What's normal for some isn't for others because we're all different.

I've looked at your profile and you have said you have endometriosis, did you know this can affect the CA125 levels and is more than likely the cause of your 34 reading?. Your doctor should have explained this to you to give you some peace of mind, however, if you're at all worried about this I'd ask to speak to somebody who can help you further. Take lots of care, big hugs ❤️Xx Jane

Crystalee
Crystalee in reply to Cropcrop

Thank you for your response, I was never given that information that endo can interfere with a ca-125 reading, that is very interesting to know. Yeah I might book an appointment with a gyno ago to give me some piece of mind. So having the reading 34 is that quiet low, isn't it? Xxx all the best

Cropcrop
Cropcrop in reply to Crystalee

It's definitely within the normal range ❤️xx Jane

Crystalee
Crystalee in reply to Cropcrop

Thank you, I wish you all the best in your journey xxxxx

My results that I would like to share.

S AFP is 2.4

S CEA is 1.9

S CA-125 is 34

No, normal levels are anything between zero and 35. Also, you should remember that for some types of ovarian cancer, the CA125 does not go out of the normal range that's why its important for a transvaginal ultrasound scan to be done too if you are presenting with any of the symptoms of ovarian cancer.

Ann x

Crystalee
Crystalee in reply to thesilent1

Thank you I have had a transvaginal ultrasound and they found a 36mm cyst that has not been diagnosed yet :(

thesilent1
thesilent1 in reply to Crystalee

Try not to worry too much. It might be a normal cyst that will disappear on its own, quite common amoibg young women I understand. Ann xx

Crystalee
Crystalee in reply to thesilent1

Thank you, I guess I will know in4-6 weeks time. Will be an anxious wait

Tesla_7US
Tesla_7US in reply to thesilent1

FYI, TV ultrasound cannot be relied upon to detect OVCA. A scan is better.

Crystalee
Crystalee in reply to Tesla_7US

Thank you, all they have done so far is taken bloods which all came back within normal range and a trans ultrasound.

thesilent1
thesilent1 in reply to Tesla_7US

Hi Tesla, as per NICE guidelines, a CA125 and a TV USS should be carrried out first. I had both and then also had an MRI scan. Ann

Yes I had lots of symptoms when my CA125 was 34 and they told me not to worry not all symptoms were related to cancer but I knew there was something wrong xx

Crystalee
Crystalee in reply to rosieb7

What kind of symptoms did you have? If you don't mind sharing? Xxx

There's a useful fact sheet by Target Ovarian Cancer here: targetovariancancer.org.uk/...

As others have said it can be affected by endometriosis, ovarian cysts & also can be higher in younger women.

Sxx

Thank you for your reply, do you think for a 22 year old girl that a reading of 34 is to high for me? I'm thinking I might get it re tested next week hmmm

Did you read the factsheet? Sx

I tried to click the link it wouldn't open from my mobile phone

If you go to Target Ovarian Cancer's website and search ca125 you'll find it. It's a good fact sheet & think it may be helpful. Do have a look Sx

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