6 month check up and elevated CA125 !

[Nicki130473]

Hello Ladies

Back last summer I had an elevated CA125 of 39 but had all the scans and tests and it turned out to be a small cyst put on my ovary that my consultant was not concerned about it. I went for my 6 month check up on last week just expecting him to say the levels had stayed the same but it has elevated now to 56 which I was shocked at. My consultant said he does think it’s anything sinister but wants to do a laparoscopy to investigate further as there are some things that don’t show up on a scan. He said that if it was OC then my CA125 would be in the hundreds but me suffering with anxiety I have googled it millions of times and read that this is not always the case. Also having been getting pain in my hip near the ovary area and I am getting worried that despite a clear CT scan 6 months ago something bad is happening and is causing this pain. I also have been in my new job only 3 days so am now going to have time off for my procedure. I am getting myself intro painic mode and would welcome any advice x

[Lily-Anne]

I would ask for a scan. My oncologist said if it doubles twice on the bounce have a scan. It’s a slow increase so could be very slow cell activity and not necessarily a recurrence as such. Mine recurrence in 2015 started with a rise in the 20’s that bothered no body but once we went over 30 they scanned me

It’s not the physical number once outside normal range but the pattern. So if it doubles keep an eye on it if it doubles again scan it.

You need peace of mind to stay healthy and in control. If he won’t request a CT Id ask your GP

Xx

[Maz189 in reply to Lily-Anne]

I have a small ovarian cyst that has now been monitored for a year with scans. It has not changed and was thought to be no problem. I have had some IBS, but no pain.

At first I had a slightly raised ca125, then a bit higher, about 40. Now it has jumped to 70.

The cyst has not changed.

I prefer not to have a CT can and I have asked for a MRI

I am a member of healthunlocked but on the antiphospholipid pages, and I could not find any ovarian cyst information there.

I have Lupus and Antiphospholipid syndrome. I know that Antiphospholipids affect several blood test results.

What I am trying to find out is (Does Antiphospholipids affect and give incorrect results for the ca125 test)

Thank you for any help you can give.

Maz189 on healthunlocked Antiphospholipids

[CallmeMum]

Hi lovely,

How your consultant can say if it was OC your CA125 would be in the hundreds is utter crap! People get diagnosed with a normal CA125 of 30-35 or less! Ask for a CT or PET scan it’s the only way to be certain that it’s not anything sinister. Keep us updated with how you get on xxx

[Lovingfall in reply to CallmeMum]

I had OC. with a near normal ca125...stage 1C3. I had a huge tumor 17.3 C. Don't be fooled...

[Nicki130473]

Thanks Ladies for the advice. He said he was going to give me an ultrasound before I have the Laparoscopy to see if the original cyst had got any bigger. I am not sure why he hasn’t offered me a scan first as I did have one before. I know he mentioned that he thought it would be like low level endometriosis rather than OC and that’s why he was doing the laparoscopy as this would not show up on the scan. I suppose you just trust what these consultants tell you but perhaps I will contact his secretary tomorrow and ask why I am not having S scan.

[Howick01]

He is following protocol-ultrasound first then the rest!

Hope your problem gets sorted soon.

Take care xxx

[Jingyu]

I am stage 3 ovarian cancer and my ca was only 60 when I was diagnosed. Pet Ct will be more precise than CT as it can distinguish a begnin cyst and a cancer.

[Nicki130473]

Thanks for your advice ladies. I just feel so confused about the whole CA125 level as I know so many other things can cause it apart from OC. I did speak to my consultant and he has advised that because I only had a CT scan followed by an additional us after in August last year then he feels a laparoscopy will give him more an idea of what is causing my elevated level so I suppose I need to trust his medical knowledge.

[ellseybellsey]

My CA125 is only 39 and I am going through reoccurrence, my CA125 was 690 at original dx. Ct scan showed lesion in vaginal vault, lymph nodes and irregularities on top of the liver, so just had a pet scan to see what the uptake is.

Ellsey xx

[Nicki130473]

Hello Ladies

Thanks for all your advice and support. I went to see my consultant last night and he did an internal ultrasound and said that my uterus and right ovary looked clear ( my left ovary was removed when I HAD MY c section) so that was positive. He said that he was 50 / 50 about whether to do the laparoscopy as the scan was clear he did not want to put me through a procedure he did not think was necessary. Anyhow he has seemed advice from powers above him who have confirmed that the lap needs to be done. I asked again what he would be looking for and he said endometriosis. I asked again whether he thought it was OC and he said that he didn't think so. But now I am worried that there maybe more to this than he is not telling me . I Just feel like I am on a roller coaster positive one minute and then negative the next xx

[Nicki130473]

Hello Ladies well I am a week in after have my laparoscopy and not feeling too sore, hoping to go back to work tomorrow so not as bad as what I originally thought. Anyway my consultant found some scar tissue ( adhesions) from where I had my previous dermoid cysts removed which he sorted and also my tube was a bit hanging so he corrected that. Also he found a peritoneal cyst within the scar tissue and removed that too. He thinks this is why my ca125 had been elevated so I feel a little relieved. He said he does not think the cyst is harmless but has sent it away to the lab so hopefully will have the results in 4 weeks so keeping my fingers crossed. So feeling less anxious and going to try and park this now until I know xx Thanks for all your support and wish you all good luck xxx

[Lovingfall]

Sorry I didn't realize this post was so old...hope things worked out...