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Slightly elevated CA 125

evolo58
Posts: 290
Joined: Dec 2017

Yup. Happened to me this time after months of it going down sharply. To be fair, it went up only six points ... 11 to 17. But I now know the panic so many ovarian and endometrial ladies feel when they see this. And I know it's usually watch and wait. 

It turned out I had a very-slightly-inflamed appendix in the last CT scan, so that might not be helping. The tech didn't noitice anything odd other than the swelling, and my nurse explained to me that a few benign things can do this... chemo, constipation (I have been a little sluggish re the #2s after the sixth treatment, which is probably CAUSED by the chemo ... back to the Senokot!, and more fiber. please!), etc. I know the logical thing IS to watch and wait. However, I confess there is that panickly voice inside me screaming, "REMOVE THAT !@#$ APPENDIX NOW!"

Have any of you ladies had small spikes in CA 125 that were NOT due to anything dire, and that went down once the problem was addressed?

I admit that the stranding, whether it's adhseions or not, is getting me spooked, and this is NOT helping. I'm due to go for two more chemos starting Tuesday, and have already asked my care team about the spike. I will see the dcotor on Tuesday before the infusion.

SF73
Posts: 243
Joined: Oct 2017

I am sorry this is worrying you, evolo. I have not experienced this yet but curious to see how others will answer your question because we all probably experience this at one point or another in our journey/fight/whatever metaphor we are using. It seems like such a small move. You just had a CT Scan and are about to start the chemo anyways. If there is a problem the two sessions should take care of them. I would try not worry too much.Hugs! 

evolo58
Posts: 290
Joined: Dec 2017

I did a little more Googling, and I see that so many things can cause that sonofagun to rise that are benign, but guaranteed to raise blood pressure: kidney stones, UTIs, even a bad cold, etc. It's possible extreme stress can raise it a point or two, and I've been having a lot of stress outside of this beast. 

I think I'm just extra skittish. My cancer was weird, and it's unsettling being an outlier in an oulier (UPSC) cancer. Even the mutation in the Foundation One report is atypical for Type IIs. It's more common for Type I endo. (Not good, not bad. Just is.) I have a theory as to what is happening, but can't verify it. I did tell my gyno-onco my theory, but really, I am no medical professional.

Some people have experienced (often-temporarily) enlarged organs from the chemo, but it appears that in the cases I've read, it's often the gall bladder ... NOT the appendix. I haven't read of anyone getting an enlarged appendix from chemo, and Googling is NOT helping at all. The nurse told me about the enlargement.

And the little spike in the CT scan was just the thing that elicited a response that came between, "Oh, NO!" and "You've gotta be kidding me!"

I'm calmer now. I think!

SF73
Posts: 243
Joined: Oct 2017

Is appendix a typical site for recurrence of endometrial cancer? I am not sure that it is. Please don't worry. Life with cancer is tough. I think we are allowed to be skittish. I know I am. I panic at least twice a day. Really hoping that it would get easier after the first year.

If your mutations are more like type I, then is it possible that you have a mix of cells - some of endometrioid histology? If that's the case I wonder if hormone therapy would be a good option for you. Do you know if your tumor is ER, PR positive? 

pinky104
Posts: 574
Joined: Feb 2013

I'm not going to be much help to you in your worry.  My CA-125's were up and down in the 7's and then went down to the 6's.  All of a sudden, one year I was in the 9's and told not to worry.  The next year, I was in the 14's and told not to worry.  Two months later I was having surgery and two weeks after that, my number was 129.2. Now I know that I SHOULD worry when the figure starts to go up.  However, I will say that it went up less than a point once when I was sick with a cold.  I had UPSC stage IVb originally.  I had very few symptoms.   

MoeKay
Posts: 180
Joined: Feb 2004

I looked through my old blood test results file and see that my CA 125 in 1999, shortly after finishing treatment was 9.  In 2000, it went down to 8.  Then in 2001, it went from 8 to 14 (also a 6-point increase like you experienced).  Nobody was concerned about that increase in my case.  I've not had another CA 125 done since 2001.  Assuming that CA 125 is a good marker for you, I think what they typically watch for is a steady increase over time, not just a six-point increase within the normal range from one test to the next. 

SF73
Posts: 243
Joined: Oct 2017

So encouraging to hear that CA125 can spike without a recurrence. Thank you for sharing your experience, MoeKay. 

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