CA125

[GinaRamsey]

Has anyone else had raised CA125 levels with either MGUS or CLL? Ovarian cancer has been eliminated but levels still slowly rising. Gynaecologist advice to my doctor is not to bother taking test any more. However, I am not happy with this decision. I would be grateful for any advice. Thank you in anticipation 😊

[SofiaDeo]

It's possible for benign and other conditions to cause a rise in CA125. Plus, a small percentage of women have elevated levels "naturally". I assume you have had a CEA if ovarian cancer has been ruled out.

mrlabtest.com/high-CA-125-b...

[GinaRamsey in reply to SofiaDeo]

Thank you Sophia for your reply. I do understand it can be a marker for something benign but do feel that perhaps it should be followed up every six months or so rather than be completely ignored.. I have lost over a stone in weight for no good reason in last 9 months or so. Just makes me feel uneasy.

[SofiaDeo in reply to GinaRamsey]

Did they do a CEA? I am seeing where at least some researchers think this is an important prognosic indicator:

pubmed.ncbi.nlm.nih.gov/299...

I hope you are able to continue to get it monitored. I agree with you, if it were me I would want it.

[GinaRamsey in reply to SofiaDeo]

I had not even heard of a CEA test but certainly wasn’t offered one. Last CA125 was 117 . I have decided to ask for a follow up in a couple of months. So 🤞

[Hoffy]

How do they completely rule out ovarian cancer? Sometimes it’s very hard to detect for a long period of time as far as I know.

my wife has ovarian cancer but it’s done well on Parp inhibitor‘s and Avastin.

I think some people do have elevated CA 125 without knowing the cause. I have no real expertise in this area though.

Hoffy

[Hoffy]

you could maybe get a second opinion for my gynecologist oncologist who specializes in ovarian cancer. Academic institutions are much better than local regional hospitals and clinics.

Be well,

Hoffy

[GinaRamsey in reply to Hoffy]

Thanks for your replies. They ruled ovarian cancer out because the ultra scan couldn’t pick up my ovaries so they have obviously shrunk, and no mass detected. I have decided to press for at least another follow up though to keep an eye on it.

[SofiaDeo in reply to GinaRamsey]

Yes, keep up with it intermittently. I recall one cancer patient who complained about something she felt in her thigh, a good year before that bone met grew enough to be seen on a scan. Some people really are in tune with what's happening internally, before it can be objectively measured IMO!

[FRL0612]

That is veey interesting as I was dx with CLL in Aug 2018 and as art of the blood tests my CA125 was 38. It was checked a month later and had gone up to 59. As I lost my Mum to Ovarian cancer I was advised to have my ovaries removed. This happened in Oct 2018 but by December my Ca125 was still elevated. I was assured that this could happen and told that it was not a concern, so I guess that you can still have elevated CA125 even without ovaries! Good Luck but if you are worried keep pressing for answers!

[blowinginthewind]

I would want regular checks too. Asking a second opinion is a good idea - here in UK you are entitled to one, and it shouldn't be a problem. I don't know where you are in UK, but I would find a consultant who trusts cancer patients, and ask for an appointment with them. If you are near Wythenshawe, I would recommend John Wynn; or actually, if you are near there, ask your GP to refer you to gynaecologist at The Christie.

[beanlake14]

CT scan?

[GinaRamsey in reply to beanlake14]

vaginal ultra scan

[beanlake14 in reply to GinaRamsey]

For sure