CA125 blood test (ovarian cancer indicator), has anyone had a high result and it been ok ??

[TheOriginalNutcracker]

Normal is 35ish and mine was 71. I had it done cos of bloating and back pain.

Have already been referred for a scan but it's not come through yet. The doc said it could be high due to endo (unconfirmed endo) or something else and she doubts it is cancer cos of my age (35), but obviously I am worried.

She said that the result can be in the hundreds and if that were the case, they would be getting me seen right away. She doesn't feel it is that urgent., and we can wait and see what the scan says.

Just wondered if anyone else has any experience of this.

Hi, very worrying for you however this might help: I had a higher reading (2 occasions) than you - I think it was up in 80s/90s and it was because of (at that point) unknown endo and chocolate cyst. My gynae was very reassuring and said he had no concerns about the CA125 result as he said it was because of the abdominal inflammation from the endo.

Hope your scan comes through soon though you won't find out if you endo from that (you may have good chance of it being likely if a chocolate cyst/endometrioma can be seen on the scan however) - have you been referred to a gynae? Best wishes.

Doc is right; a high CA125 level can also be due to endometriosis, abdominal inflammation from that can cause that to be high as well.

What soprt of scan are you having; I ask as a normal internal ultrasound scan will not reveal any endo deposits on the uterus it if is there. It should show up any endometrioma (chocolate cysts) which are endometriosis related if these are on the ovaries.

In any event you should be referred to a gynae preferably as well one with a specialised interest in endo. I would ask such a person outright about their experience in dealing with suspected endo cases.

www.endo.org.uk is a good website.

Thank you both.

I've not been referred to a gynae yet no

I personally think I have had endo for years. My periods are currently so painful that I've been prescribed tramadol for them.

My gp said that if the scan was clear they just repeat the bloods but I shall ask for a gynae referral now instead.

Oh it is just an internal scan yes

I think it has to be considerably high for them to be concerned about ovarian cancer.
I had the scan and repeat bloods. If the levels are going up they will refer you. Mine had come down.

Thanks knit, I have my fingers tightly crossed that it's nothing awful

Some GPs simply do not recognise endo even if presented with a seemingly classic case of it (me being a prime example). Endometriosis is a common cause of very painful periods but its simply not always recognised.

I would certainly be asking, nay insisting, on a gynae referral in your circs rather than just repeating bloods. Again, a standard internal ultrasound scan on your uterus will not detect endo if it is there.

I would also suggest you keep a daily pain and symptom diary as this will give the gynae clues.

CA125 can be raised for all sorts of reasons as mentioned above but you need an URGENT referral, 70 needs to be seen ASAP for an internal ultrasound to check for ovarian cancer. You must not be left and your GP is negligent if she is not ensuring that you are seen like, last week. You must not accept that the scan has not come through yet. In all likelihood, given your age, it's probably not ovarian cancer but it might be and with ovarian cancer it needs to be caught ASAP, it's one of the most difficult to treat of all cancers and can progress very quickly.

It's best to get it ruled out and then you can concentrate on getting treatment for what will hopefully be a benign condition.

www.foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf
This should help with the facts- there is a section on page 7 about screening.

Thanks for the link Knit

I'm booked in for an internal and pelvic ultrasound on 23rd Jan. Not overly happy about hving to wait another 2 weeks but it could be worse I suppose.

Well my scan is now tomorrow

Not bothered about the actual scan, but really worried about what they might find. Also wondering if i will find anything out there and then or not. A friend said the person doing her scan said it was cysts. What would they do if it was something bad ?

I'm still in pain every day and night, and surprised I don't rattle with all the painkillers i'm taking.

Good luck today nutcracker, let us know how you got on. I'm waiting for blood test & swab results (phoning this afternoon), and still waiting for scan date. My abdo has been better recently but dull back ache there daily

I have endo and cysts on my ovary but am manging the pain - very strangely though I havent had any pain for at least 5-6 months for years and years I had endo pain every time I had a periods, my periods at the mo are every 20 days and heavy for 2-3 days Im putting this down to stress as I am nursing a sick parent.

Ive never been tested for CA125. Should I have been???

Do you get bloating too hula ? From what I have read a CA125 test should be done if the patient presents with bloating, pain, feeling full and a couple of other things Ive forgotten.

Maish - Any news ?

Well Ive been scanned. I have 2 large cysts, one on each ovary and signs of extensive endo, although they can't tell for sure with just the scan obviously. They could see what they thought was blood too, and mentioned that something (endo maybe) was all over/inside my fallopian tube.

She said she could tell I'd had it for some time. The report will go back to my gp and then i'll be referred to a gynae.

They didn't say that anything looked sinister, although I don't think they would say. It did unerve me though that she called in a more experienced sonographer to have a look.

More waiting now then.

Still feeling quite worried atm, but at least i'm being seen now.

Original I was referred to a gyne who took me in did a lap to confirm wash the area out and sent me home,.6 weeks later I was doubled up in pain again so searched and researched endometriosis,.found a specialist surgeon in my area on nhs and asked my HP to.refer me to him. He is brilliant can't stress to you enough you must see someone who specialises and knows about endo. Try the Dr Foster website to find someone in yr area

Thank you Hula. Will have a look.

I know the name of the two consultants at my local hospital, and know that one is asolutly rubbish so i will be asking to not be referred to him too.

Can't seem to make any sense of the dr foster site

nutcracker no wonder you were in pain!

As for them telling you if it was anything sinister, I had an ultrasound on my thyroid a year ago & the woman told me there and then that it looked suspicious (luckily for me she was wrong as the biopsy came back clear & a second ultrasound with a different person confirmed that).

I wasn't able to get my results because you had to call after 3pm & the girls had something on straight after school so couldn't call. MIL coming tomorrow so going to be difficult to call then too because don't want her knowing. Don't want to leave it over the weekend though..

Hello. I had highCA125 and had my ovaries removed (I have the breast/ovarian cancer gene) and my ovaries were fine. I think CA 125 often gives false positives.

High CA125 here. Scan showed cysts and we waited a month to review. Endometriosis.

CA125 tends to be higher in ov cancer. In a young woman with symptoms of endo you can assume endo and just follow up

Thankyou both, thats really good to know.

Polyester - If you don't mind my asking, how old are you ? Thinking in terms of being put into the menopause.

We'll I just got results back for swab & blood test - both normal (although stupidly I don't know what exactly they were testing for in the blood. Still no news of scan date. Think I probably need to call back & ask for a follow up appt with gp or should I wait til scan comes through?

I had kidney failure and sepsis in March. CA125 at 75. Told ok as sepsis may be raising CA125 levels. In May CA125 down to 55, had ultra sound and internal. Found nothing and told no further action necessary. August now told CA125 at 63 and scans must have missed something. I am scared. Can they please make their minds up as this is like a sword off Damacles hanging over me. If infectiond other than cancer can elevate CA 125 then I always have one as I have Rheumatoid Arthritis plus CA125 can indicate pancreatic cancer and my diabetes is classed as insulin intolerant so it is frequently Hi, Ketones and over 30. Any advice would be welcome. cheers

I do sympathise. I've just had CT scans from neck to pubes for CA-I9. No symptoms. Waiting for results. It's meant to be 34 and 2 yrs ago it was 51. It's actually gone down since then - last year 47, this year 46. The first thing I found on Google said that the test was unreliable as a diagnostic measure, too many false positives/negatives.

The reasons I have annual blood tests is that I'm being monitored after the removal of a v large Borderline Ovarian tumour 4 yrs ago. Pre-surgery my CA125 was 130. Caused by the tumour rubbing against other organs. No malignancy.

My CA-125 is now normal, but I also have the CA-19 test because it's meant to be more accurate for my variety of tumour. But, as I said, not v accurate at all except to see if chemo post-diagnosis is working.

I have zero confidence in my local hospital. No Gynaeoncologists. V much the B Team. I think they are going by the book because they are overseen by the teaching hospital where I had my surgery. I assume 3 raised levels flags something up, even if it's a declining trend and it was actually higher 2 years ago when nothing was done.

But I really could do without the anxiety this causes. The Sword of Damocles hanging over me is exactly how I feel. I know I should be grateful that I'm getting an MoT that would cost the earth on BUPA. But I'm the sort of person that would pay not to have to have one.

I don't think a level of 63 justifies 'scans must have missed something'. AT ALL. I know someone whose level was 600+ through inflammation caused by endometriosis. Have they tested your CA19? It's meant to cover pancreas and other gastro-intestinal issues, which I don't have, but hey-ho. CA125 is much more specific to ov ca and if your ovaries were clear in May, it's v unlikely there's something wrong with them now.

What's the next step for you? It's 16 days and counting since my scans but I'm too scared to ring.

No one has offered to test my CA19. I have had pancreatitis a few times over the years but I just keep being sent for pelvic scans etc. for raised CA125. My husband is scared for me and himself although he acts brave. I am scared of getting pancreatic cancer as there doesn't seem to be any cure as it is always found too late. My good friend died from it. Why won't they test for it? They keep telling me that 'they' must have missed something when they find nothing in a scan I don't know whether to be glad they haven't found anything but worried as they might have missed something. Living on a sword edge is not good. Any advice please!