Cancer with no rise in CA 125?: Hello collective... - My Ovacome

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Cancer with no rise in CA 125?

FlowerRose profile image
10 Replies

Hello collective hearts,

While looking for something completely unrelated to cancer it was found on a CT that i have a new 3 cm ( not mm) spot on my lung where previously there were only two tiny 2 and 3 mm ones. Two months ago this was not there.

Will be getting PET to determine metabolic activity.

Normally very chipper onc looked concerned and said could be 1) metastasis 2) new cancer or 3) just an infection. Never prayed for a lung infection before, but here I am.

My question is: I've been told the CA 125 has been a good cancer indicator for me and onc's puzzled because it's still very low. Did anyone have a recurrence without their 125 rising?

I'm one year out of successful chemo and debulking surgery and on olaparib and avastin for almost a year now.

Thanks all.

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FlowerRose profile image
FlowerRose
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10 Replies
SUE7777 profile image
SUE7777

I had an infection on my lung pnuemonia but was told it might have spread, hope your the same CA125 looks good 🤞 All the best Sue xx

FlowerRose profile image
FlowerRose in reply toSUE7777

So does that mean you were told it might have been a spreading cancer, which I'm sure you worried about, but then found out it was "only" pneumonia? If so, did you have lots of other pneumonia symptoms? Or were you surprised to hear that you had it? Because I'm almost symptom free, here.

SUE7777 profile image
SUE7777 in reply toFlowerRose

I was in Hospital and very ill with pneumonia and told the cancer might have spread, really didn't need to hear that especially as it hadn't and I was already really ill.

candyapplegrey profile image
candyapplegrey

i'm-also-worried-re-ca125-as-mine-is-low-but-it-wasn't-tested-when-cancer-found-so-it-might-always-have-been-low.-cross-my-fingers-you-have-lung-infection.-xx

FlowerRose profile image
FlowerRose in reply tocandyapplegrey

It's insane that I'm praying for a lung infection. Cancer can really mess with our priorities, eh? Well i hope yours is a good indicator too, though I know they say don't rely on it too much.

delia2 profile image
delia2

Hi. I sure hope it’s “just” an infection. I always have low CA 125 so it was only 6 on recurrence . I think it would be odd if you had high numbers in the past and then suddenly it stopped being a marker. So hopefully your numbers are still telling you it’s not OC.

FlowerRose profile image
FlowerRose in reply todelia2

That's a good point and very reassuring. Yes it was in the 1,000s when first found cancer and now remains around 11 after treatment. I'm sorry yours is not a reliable indicator. We just want some solid info sometimes, right?

mupash profile image
mupash

ARE YOU BRCA POSITIVE? SOME PEOPLE GET NODULES ON THEIR LUNGS THAT EITHER GO AWAY OR REMAIN BENIGN!

FlowerRose profile image
FlowerRose in reply tomupash

Well, that's a loaded question that i never seem to get a straight answer to. I'm brca negative, but my tumors tested brca positive. Not clear what category that puts me in, you know?

Melody6 profile image
Melody6

Hi FlowerRose, I can’t answer your question re the CA125, I’m afraid, however, it does sound promising if your numbers are normally a good indicator for you and they are not raised at the moment. Keeping my fingers crossed for you also. X

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