Awaiting scan after high ca125 test

[Starburst8]

Hi everyone,

Long time HA person here! Although I have been feeling so much better mentally for a good 2-3 years now 😊.

So I'm hitting a period of worry and uncertainty - after bloating and discomfort I went to my gp who did some bloods. My ca125 (cancer marker) came back high at 45 with a 35 cutoff. I don't have my scan for over a week yet and I'm just not sure how I will get through... I'm incredibly preoccupied. Looking for tips and ideas on how to get through this without spiralling. I'm in my early 40's with young children - this last bit makes me especially anxious if I go there.

Thank you

S

[Darksky]

Waiting for test results is the very worst part of diagnosis.

Just remember you don’t have it until they say you have it. There must be other stuff that raises levels apart from cancer. It’s natural to think the worst. All people tend to do that and people with HA are experts are predicting their own doom.

Just keep busy, I know what it’s like when something is in your mind, it’s there pecking away all the time. Get outside as much as possible, do stuff. Try not to sit ruminating. I don’t need to tell you but don’t sit googling what ‘could’ be wrong with you.

Fingers crossed you get a negative result.

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

Please also read this post:

http://www.nomorepanic.co.uk/showthread.php?t=213239

[WorryRaptor]

Try not to panic just yet. The CA125 test can be elevated for lots of different reasons, such as your menstrual cycle, harmless fibroids and benign ovarian growths (which are much more common than the malignant ones)

I had a scare with this too, only the other way round. My actual scan showed something sinister, and I spent two weeks waiting to find out if it was something to worry about. My CA125 wasn't raised, but there was something visual on the ultrasound which was even more indicative of something bad, and they seemed extremely concerned about it. After a second scan and thorough exam from a specialist, they concluded an egg follicle had decided to collapse in a weird way and the previous ultrasound had picked it up. By the time they scanned me a second time, it was completely gone.

Its never the thing until they tell you it's the thing. I hope you get the all clear soon. :hugs:

[Scass]

I’m sure there was someone else here recently with an elevated ca-125 and all was well. I had to have the same test & although mine wasn’t elevated I remember the horrible wait. I also remember reading how common it is for it to be elevated.
You are young still, it’s very unlikely to be anything bad xx

[pulisa]

I can't really add any more to the excellent advice you've been given. It would be so good if we could all "fast forward" to these scans and avoid the wait which is the very worst bit and yes, you're going to be tormented by the what if thoughts...but they are just what if thoughts and not actual fact. Dr Google will fill you full of even more fear so you know that you want to avoid that option like the plague.

It's a question of getting through the hours in any way you can and keeping very busy with anything other than googling. I hope you have decent family support and please just use here as somewhere where you can express anything you want as we all "get" what you are going through and will try to help in any way we can xx

[Starburst8]

Thank you everyone. It's a real head mess... Even objectively I know it's a bit worrying but at the same time I know there's nothing really I can do until I know what's going on. I keep telling myself it could be caused by other things than the worse... But it always comes back to the "but what if?". I'm dreading the scan just as much as I want it over and done.

I actually wasn't worried about having the blood test as I *thought* it would be OK. OC had crossed my mind but I thought I was only going to the Gp through an abundance of caution. So I didn't even tell anyone I was going to the Gp!

WorryRaptor - that must have been stressful. I'm so glad it was all fine in the end though. Xxx

[Limeslime]

Hi!
I was here at the beginning of the year with a raised ca125 too. I swear, I think that blood test should be banned in women who haven’t gone through menopause yet! It caused me so much worry for several months, and I learned so much about the unreliability of this test in younger women.
Firstly, in pre menopausal women, a raised ca125 that is less than 100, equates to a risk of cancer of approx 6%…so a tiny risk!
Secondly, were you on your period, or ovulating when you had the blood test done? As this significantly raises your levels.

I had a raised CA125 of 57 in January.
I had AAAALL the scans….abdominal ultrasound, transvaginal ultrasound, colposcopy and hysteroscopy. All they found was “either adenomyosis or a small fibroid”.
They rechecked my CA125, and despite clear scans, my levels had risen to 88!
Now, both times I’d been tested, I was on my period. They wanted to check my levels again in another 6 weeks, so I made sure to book in at a time when I wasn’t on my period this time. And guess what…my levels came down to 25!!!
So it’s safe to say, I am not a fan of this blood test! I was told by the consultant that it is normal to see fluctuating levels in women who are still menstruating, and she wasn’t concerned by my levels at all.
I was also speaking to a lady who’s ca125 score was over 200, and her scans etc were all fine too!
Alot of ladies with raised ca125 actually find they have IBS, endometriosis, fibroids….or are simply just menstruating or ovulating when the test was done!

A ca125 level as low as yours, at your age, is not at all concerning.

[Starburst8]

Hi limeslime - thank you so much for your reply.. I'm so glad it's all OK for you. But wow what a horrendous few months you had! I read it could be caused by menstruation but have never seen anything about ovulation.

I was bang in the middle of my cycle, so could be related to ovulation I guess. Two nights before my test I had a lot of pain in my lower left side - that I've never had before. I thought it was somehow linked to ovulation... But not normal for me. Plus I saw I photo of myself and I looked pregnant. Im slightly on edge about oc as I have had a lot of fertility treatment in the past.
I have one week until scan..!!!

[Limeslime]

It’s also possible that you have an ovarian cyst which is complete benign. That can also cause raised ca125 and bloating.
To be honest, if you had ovarian cancer, I’d expect to see your CA125 levels in the high hundreds! (I believe it can go up to 10,000)
I read that even with stage 1 OC, ca125 is usually atleast 125!
Honestly girl, your levels are soooo low, that the likelihood is that this is a completely benign cause.

But yeah, ovulation can cause raised ca125 because the ovaries are being stimulated, and given that your levels are only slightly above normal range, I’d say this is a very strong possibility!

Could the bloating be dietary? Perhaps IBS or some food intolerance? Those issues can also cause raised ca125. Basically, any inflammation in the pelvic/abdominal area can cause ca125 to rise.
I think this blood test has its place in certain groups of women but shouldn’t be used as freely as it currently is as it causes alot of unnecessary anxiety, and GPs need more knowledge regarding avoiding it during certain times in a woman’s cycle!

Good luck for your scan, I’m sure you’ll be reassured! The waiting is the worst part, so try to do things that make you happy in the meantime!

[Starburst8]

You have no idea how much comfort your post gives me Limeslime. Thank you for taking the time to post. Not sure if youve seen this reseach: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1003295

Xxx

[Limeslime]

Ah yes, that article brought me a lot of comfort when I was waiting for my scans. The general consensus is that this test is unreliable in women under 50 (still having periods) and I’m living proof of that too!

Good luck next week, please come back and let us know how you get on!

[Elliejane44]

I was offered this blood test once after an internal when my gp said she could feel a mass . I just could not face it as either way I would need a scan so just waited for scan . I guess what I am saying is that test is pretty unreliable and can be high for many reasons

[Sar89]

Hi just to add onto this thread I have had this marked raised 2x now. Each time I had an ovarian cyst. I am plagued by them unfortunately x

[Starburst8]

Hi Sar, thank you for taking the time to reply. Can I ask how did you know you had cysts? Did you have symptoms? Also, how high were your ca125? Not long until my scan (Monday) and anxiety is increasing!

[pulisa]

Wishing you all the very best for tomorrow and fingers tightly crossed for some reassuring news..Please let us know if you feel up to it? You've done really well to get through what must have been a horrible week of worry and anticipatory anxiety x

[Starburst8]

Thank you Pulisa.

***trigger warning***


I have been doing OK this week, until today a friend/work colleague has just passed away from OC. When I saw her last she was telling me how she'd just had surgery and had been told she didn't need chemo as it was early. That was last summer. She's now gone at age 33.
I went to the Gp with bloating and discomfort in part because she brought this to the forefront of my mind. She's now gone and I face a scan for the same thing. I also looked at my referral letter and my ca125 is actually 47 rather than 45. Only two points but the wrong way. I'm sad, worried, angry all at once.

[pulisa]

Of course this is really tragic news but this poor lady isn't you and you have no diagnosis of OC. You have a slightly elevated blood marker and some bloating. It's sensible to get it checked out and this is where you are at now. The scan will be looking for other conditions too..Have the scan and see what is or isn't the problem. Don't try to predict the future based on your friend's tragic experience?

[Starburst8]

You're right. Thank you Pulisa. I'll post back on here tomorrow xxx

[pulisa]

Good luck and take care today. Wishing you all the very best xx

[Starburst8]

Hi everyone,

Update from me.. My TVUS was clear! They re-did bloods and I'm likely going to have a laproscopy and tube removal. I feel very mixed... Relieved.. But desperately sad for my friend...and emotionally wrung out.

I hope this post helps anyone else facing a high ca125 in the future xxx

[pulisa]

I'm very relieved for you but understand your mixed feelings. You must be mentally exhausted..and need to grieve for your friend and recover from your own ordeal xx

[jojo2316]

Wonderful news….. but probably also bitter sweet in the light of your poor friend xx

[Starburst8]

Another update from me.

So my repeat ca125 is in and the doctor wants to speak to me on the phone on Monday. This is a bit triggering... But hopefully it's all OK. I don't know what the repeat level is.

[Starburst8]

Oh Gosh... Having a meltdown. My ca125 was 128 when I was tested a couple of weeks ago. 😭. Literally having a meltdown. My ultrasound of my Ovaries was clear... But what if something else is going on??

I'm having another ca125 this week and if that's raised an MRI. I don't have fibroids or anything like that.

[Scass]

I know it’s worrying, you’ve been up and down in emotions. But it’s good that they are checking to find out the reason. Did you ask what they were looking for?

[Limeslime]

Can I just say again how much I hate this blood test!
Were you on your period or ovulating when you had the most recent test done?
I was able to get my levels down from 88 to 25 by a combination of choosing my times wisely to get the blood test done (beware of how much a ca125 can be affected by menstruation) and by doing a 7 day cleanse beforehand. I cut out caffeine and followed the Terri-Ann 7 Day Cleanse. I can’t promise it will work for everyone, but it helped me deal mentally with the anxiety because I felt like I was being pro-active.
Plus, you can be very reassured by your TVUS being clear!!
Chances are, you’re having a bout of IBS, or it’s just where you are in your cycle.
These tests are not fit for purpose in women who are still having periods!

[Starburst8]

Thank you both for your replies. I've calmed down now. I thought it might raise a bit but that was an unexpected rise!!! I thought I'd keep my updates on this thread so that the next poor soul who has a raised ca125 can see how problematic it can be! Limeslime - I was on day 5 so period just finishing - there was still some v small amount of blood when he scanned. That's probably whats done it... But he was quite surprised that it almost tripled... That's quite some rise!

I had the GP give me a pelvic exam yesterday which was OK - all normal - so that's helped the worry a bit. She also said all my other bloods were fine.
Had a third lot of bloods taken today and hoping the ca125 is normal, but I'd take lower at this point!

I'm reassured I don't have ovarian cancer but I can't rid the worry that there's something else going on.

[Starburst8]

I'm also going to try the Terri Ann cleanse... Never heard of it but will give it a go if it worked for you!

[Starburst8]

Argh... Results are back and I have to speak with the consultant tomorrow. 😭

[Limeslime]

Do you know anything about the results yet?

I think after x3 high results, they will offer a CT scan, then if that is clear but ca125 continues to rise, they may offer a laparoscopy. Hopefully it won’t come to that, but this may be what the consultant will discuss with you.

I don’t know if you’ve had a hysteroscopy yet, but they may suggest doing that tomorrow too. I had that done at my appointment with the consultant, and despite what Id read online, it was completely painless!!

I also have to see my consultant again tomorrow too (breast) so I know the fear is real. Hugs.

[Scass]

Argh... Results are back and I have to speak with the consultant tomorrow. [emoji24]

We’ll be here xx

[Starburst8]

Hi Limeslime,

I was wondering how you were getting on and hoping you would post. I'm speaking with the consultant tomorrow so fingers crossed. I had a thorough check with another ultrasound scan - somewhere I really trust and they were so much better and reassuring. My Uterus, cervix and Ovaries are definitely clear. Im basically going through a process of body part check elimination!!!

He said I'd have an MRI if it comes back high again.... I just hope its not gone higher than 128....

I'm on the fence at the moment as to whether this test is a blessing or a curse!

Good luck with your breast check... Let me know how you get on. Xxx

[Starburst8]

Thanks scass xxx

[Starburst8]

Well after:
Ca125 test 1 = 47
Ca125 test 2 = 148(!)

My third test was.... Drum roll... 32!!!!!!
Diagnosis: endometriosis and adenomyosis.

[Limeslime]

Yeeeeey!!!!! Amazing news!!!
(Freaking hate that blood test!)

[Scass]

Well after:
Ca125 test 1 = 47
Ca125 test 2 = 148(!)

My third test was.... Drum roll... 32!!!!!!
Diagnosis: endometriosis and adenomyosis.

Oh wow! Thank you for updating. You must feel soooo relieved. Thrilled for you x

[stick1974]

Really pleased for you, and sorry for all the stress and anxiety you’ve been through. Take care

[Js27]

Hi everyone,

I really just wanted to weigh in on this thread. I one million percent agree with limeslime that this blood test should not be allowed in premenopausal women!!

4 years ago (age 21) I had the test done and it came back 35, right on the line so my doctor referred me for an urgent ultrasound anyway… all clear.

I left it at this and fast forward 4 years (now 25) I went to the doctor with bowel issues, they ran the ca125 test and it came back 52! (I was day 1 of period). This led to a downward spiral of HA and pure panic that I booked a private US.. it was clear. For my anxiety this wasn’t good enough, so I booked a private consultation with a gynae. She said that this test is raised for so many reasons in pre menopausal women however for my own peace of mind she would do a hysteroscopy (which doesn’t even show ovaries but who am I to argue). So I have that next month. My mind has gone around every alternative possible cancer that could have caused the rise from breast to bowel.

Despite knowing the high rate of false positives associated with this stupid test, I’m still freaking out. I .hate .this .test.

I hope everyone is doing good xx

[Laceymay]

Going through this at the moment. CA 125 over 100 … will be having the cyst removed but is it really true that benign growths can elevate this test result ? I cannot seem to find a definitive answer

[Js27]

Going through this at the moment. CA 125 over 100 … will be having the cyst removed but is it really true that benign growths can elevate this test result ? I cannot seem to find a definitive answer

Hi Laceymay, sorry you are going through this, the anxiety that this test can cause is horrible.

I’m not a doctor however over the past year I have been obsessing about ca125. It seems that unless the test was done following a cancer diagnosis, it is relatively inaccurate, particularly in premenopausal women.

After speaking to multiple doctors including a consultant gynaecologist oncologist, they have all said that the test is so unreliable as it can be raised for many reasons including menstruation, endometriosis, fibroids and a cyst can definitely increase levels. It’s good that you are having your cyst removed ! Hopefully this will give you more reassurance.

Despite this I’m still worried about my level, I’m having another blood test on Wednesday to see if my levels have gone down and I’m terrified. Nothing was seen during my ultrasound, which almost gives me more anxiety as I don’t know what’s caused my rise, or if they have missed something sinister as I heard ultrasounds are only 75% effective in finding problems on the ovaries.

The only thing I am trying to tell myself is that it was done on the first day of my period. The sonographer who did my scan actually told me that she wished GPs wouldn’t do that blood test as it causes so much anxiety and can be elevated for absolutely anything.


All the best with removal of the cyst xx

[Js27]

So I had my repeat ca125, it has come back at 95. Has risen from 52, I’m terrified.

[Js27]

So I had my repeat ca125, it has come back at 95. Has risen from 52, I’m terrified.

UPDATE*
After an initial ca125 of 52, a clear pelvic ultrasound, a repeat ca125 of 95, a normal hysteroscopy, polyp removal, normal biopsy and a normal colonoscopy….. my final ca125 reading was 54. Still above what it should be but not trending upwards. My advice is please be aware of what time of your cycle you are on when doing this test, menstrual Fluctuations can cause up to three-fold increases in ca125 levels!
Possible this is due to endo but awaiting more info from my gynae.