CA125 levels

[eh11g11]

Hi everyone, my mum was diagnosed stage 4 ovarian cancer in January 2018 she is currently on Avastin maintenance and her CA125 has slowly been going up however she had a result today and it has doubled to over 300 😢😢 she had a scan a few weeks ago and they said they couldn’t see anything. Does anything think they would rescan again now? They said it would be 3 months but now it has doubled I am hoping they will do it again. This is obviously very worrying and very scared this means it may be a recurrence xx

[Lyndy]

Hello- well it might mean recurrence but if nothing shows on the scan and she doesn’t have any symptoms they will probably wait. I know this is hard because you want to know for definite.

I had a similar thing happen last year but 3 slightly larger than normal lymph nodes and no symptoms for a year and they were inclined to think it was a false alarm. Best practice seems to be that you treat as soon as there are symptoms. Not easy for us patients all this waiting and seeing but don’t panic yet! Love to you and your Mum xx

[eh11g11 in reply to Lyndy]

Hi lyndy, thankyou I am really really hoping it’s a false alarm or due to Avastin 😢hope you are doing ok xx

[Lindaura]

Dear friend,

I would be very concerned. Most of us felt no symptoms when we were first diagnosed and when we recurred, most of us felt great! No symptoms, except a rising CA-125.

When I recurred in September, I was feeling fantastic, but with a doubling CA-125, I was not going to watch and wait for symptoms or for the cancer to invade any of my organs.

Fortunately, a small amount of seeding showed up on my scan, just on my peritoneum and not inside any lymph nodes or organs.

I was put in treatment right away and 5 months later, the cancer is nearly gone and my CA-125 is down to 15.

So if I were you,

I would either have them rescan, or take another look at the previous scan, and/or ask for another blood test and if it doubles again, ask for treatment .

Do not be satisfied to “wait for symptoms “. By then it could be invading parts of the body that are harder to treat.

That’s my opinion anyway.

Best wishes,

Laura

[eh11g11 in reply to Lindaura]

Thank you Laura - I am going to push for another blood test and another scan!! Take care xx

[Hidden]

Hi

I am having similar problems. Very confusing as no one knows where primary is, and cancer only showed on PET scan as 3 slightly enlarged lymph nodes and small amount of peritoneal seeding.

On Niraparib but CA125 rising.

Scan 6 weeks ago showed very little change (CT not shown any seeding), getting a lot of abdomen pain and swelling so another CT arranged for Monday.

This is a very confusing disease and every case is so different.

Whatever you decide best of luck to your mum.

janet

[eh11g11 in reply to Hidden]

Thank you Janet - it is such a horrible disease and so very unfair! I hope you’re doing ok - take care xx

[MostlyHarmless]

Hi. I was on Avastin (April to this January) and was taken off it because my CA125 was rising slowly and also I had a scan in December which the doctors eventually agreed showed some progression. I have since had two more scans at four week intervals which show no change 'as far as they can see'. They wanted to put me straight back onto chemo but I insisted on more information - hence the extra scan in January. In the end I saw the actual consultant and we agreed that I should have regular extra scans and blood tests.

Push hard for an extra scan. Don't take no for an answer.

Incidentally, I got some very useful information from Anna at Ovacome about Avastin occasionally increasing CA125 levels so I suggest you phone and talk to her about it. I took it with me when I went to see the consultant.

[eh11g11 in reply to MostlyHarmless]

Thank you!

[eh11g11 in reply to eh11g11]

For that my mum has been in touch with Anna and she has sent some info over today. As you say it can be due to Avastin which I hope so

I hope you’re doing okay xx

[eh11g11]

Thank you all for your replies, they have said still the next scan is booked for the 1st May which I think seems too far away! Because the last scan was ok they don’t seem concerned but that has doubled which is a big increase.. I have read that sometimes if you are on Avastin it can cause an increase in CA125