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Is it possible to have very high CEA and CA19-9 without cancer?

Posted by marianna13 @marianna13, May 24 4:23pm

Hi,
My husband was hospitalized with a mild stroke a couple of weeks ago. While admitted, they did a CT scan, which caught just enough of his lungs to show a 1 cm mass. They did a chest CT, which showed a mass in the other lobe (1.6 cm) as well. A year or so after he had pancreatic cancer (6 years ago) there was a fungal infection in his lungs, which we feared was cancer at the time, so we thought this could be more of the same. But, then they ran a CEA with a result of 39.6, followed by a CA19-9 of 3,057. Our small-town hospital can't do a PET, so we had to schedule that after he was discharged. The scan is another 2 weeks out, and as much as I'm trying not to jump to worst case scenario, I fear that the cancer might be back.
I'm posting all this in hoping you know of someone who had high numbers like this and didn't have cancer. I could really use some hope! Thanks

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ncteacher | @ncteacher | May 24 8:33pm

I hope all is well with your husband. Waiting to get testing and results is so frustrating and nerve-wracking! I am definitely no expert; all I can share is what I read when I was dealing with elevated test results a couple of months ago. These blood tests can be unreliable in making a new diagnosis and are usually coupled with other procedures such as endoscopy and biopsies, but they're often used to track treatment progress. I've read that other situations can elevate the test results even if cancer isn't present, although I don't know what those situations would be. In my case, my CEA was 13.X and my CA19-9 was 1736. I was positive for pan can stage 4 based on endoscopy and then a biopsy and visual check performed during a laparoscopy the following week. Here's hoping that you all can get the testing done quickly and, ideally, get the non-cancer diagnosis you hope for.

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1 reply
lilliejane2 | @lilliejane2 | May 25 8:29am

My CA 19 9 numbers started to rise after I had Covid in Dec. As of last bloodwork, they were 432. I had a PET scan that showed nothing.
Since Covid, I have been struggling with IBS and Crohns. I have read that CA 19 9 can be elevated with these, as well as some lung disorders.
My best wishes to you both for cancer to be gone and a return to a healthy and wonderful life!

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1 reply
marianna13 | @marianna13 | May 25 12:18pm
In reply to @ncteacher "I hope all is well with your husband. Waiting to get testing and results is so..." + (show)
@ncteacher

I hope all is well with your husband. Waiting to get testing and results is so frustrating and nerve-wracking! I am definitely no expert; all I can share is what I read when I was dealing with elevated test results a couple of months ago. These blood tests can be unreliable in making a new diagnosis and are usually coupled with other procedures such as endoscopy and biopsies, but they're often used to track treatment progress. I've read that other situations can elevate the test results even if cancer isn't present, although I don't know what those situations would be. In my case, my CEA was 13.X and my CA19-9 was 1736. I was positive for pan can stage 4 based on endoscopy and then a biopsy and visual check performed during a laparoscopy the following week. Here's hoping that you all can get the testing done quickly and, ideally, get the non-cancer diagnosis you hope for.

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Thank you for your response and positive thoughts. I hope you're doing well!

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marianna13 | @marianna13 | May 25 12:52pm
In reply to @lilliejane2 "My CA 19 9 numbers started to rise after I had Covid in Dec. As of..." + (show)
@lilliejane2

My CA 19 9 numbers started to rise after I had Covid in Dec. As of last bloodwork, they were 432. I had a PET scan that showed nothing.
Since Covid, I have been struggling with IBS and Crohns. I have read that CA 19 9 can be elevated with these, as well as some lung disorders.
My best wishes to you both for cancer to be gone and a return to a healthy and wonderful life!

Jump to this post

Thank you for your response, and I'm sorry that you've had to deal with Covid and all the resulting uncertainty. My husband never got the virus, although he's had lots of other complications since the Whipple, some of which may have resulted in raising his CA19-9 as high as 700 a couple of years ago. He also had it checked with scanning, and it was clear at the time. His test results have fluctuated enough in the past (mostly below 100) for the oncologist to stop testing him. It was more anxiety producing than beneficial. The drawback is that we really don't know how long his CA has been high, if it was a gradual increase or a big jump. As it is, we can't really correlate it with his health changes. The high numbers possibly relating to IBS or lung problem are certainly possibilities. We're seeing a lung specialist in a couple of days, so maybe he'll have some answers for us sooner than 2 weeks? Fingers crossed!

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Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @marianna13 "Thank you for your response, and I'm sorry that you've had to deal with Covid and..." + (show)
@marianna13

Thank you for your response, and I'm sorry that you've had to deal with Covid and all the resulting uncertainty. My husband never got the virus, although he's had lots of other complications since the Whipple, some of which may have resulted in raising his CA19-9 as high as 700 a couple of years ago. He also had it checked with scanning, and it was clear at the time. His test results have fluctuated enough in the past (mostly below 100) for the oncologist to stop testing him. It was more anxiety producing than beneficial. The drawback is that we really don't know how long his CA has been high, if it was a gradual increase or a big jump. As it is, we can't really correlate it with his health changes. The high numbers possibly relating to IBS or lung problem are certainly possibilities. We're seeing a lung specialist in a couple of days, so maybe he'll have some answers for us sooner than 2 weeks? Fingers crossed!

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@marianna13, I'm wondering if you have an update. How is your husband doing? How are you doing?

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