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Elevated CA-19-9 for over 2 years

Posted by davidgg @davidgg, May 2, 2022

After an appendectomy (due to appendicitis), they noticed whitish-gray mucus in my abdomen. My initial thought was PMP (Appendix cancer), but after pathology's second opinion, it was ruled out. However, my CA-19-9 was 695. Lab work, MRI, and CT did not show any cause for the elevated CA-19-9, but after about four months it was down to about 215. I am now three years out and have had annual CA-19-9 blood work. I ranged between 169 and 191, so still significantly elevated with no identified cause. Doctor concluded it is just "my normal".

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 6, 2022

@davidgg, I can imagine that an elevated CA-19-9 concerns you. It sounds like you and your doctors have made thorough investigations. Are you worried that something is being missed? Have you considered getting a second opinion?

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1 reply
davidgg | @davidgg | May 6, 2022
In reply to @colleenyoung "@davidgg, I can imagine that an elevated CA-19-9 concerns you. It sounds like you and your..." + (show)
@colleenyoung

@davidgg, I can imagine that an elevated CA-19-9 concerns you. It sounds like you and your doctors have made thorough investigations. Are you worried that something is being missed? Have you considered getting a second opinion?

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It has crossed my mind. I don’t have any symptoms and it could be something that just has not manifested clinically. There is not much research on this topic. From what I can tell, for the majority of reported cases, within two years the underlying cause presents. I think we are sort of in a wait and see mode now.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 13, 2022
In reply to @davidgg "It has crossed my mind. I don’t have any symptoms and it could be something that..." + (show)
@davidgg

It has crossed my mind. I don’t have any symptoms and it could be something that just has not manifested clinically. There is not much research on this topic. From what I can tell, for the majority of reported cases, within two years the underlying cause presents. I think we are sort of in a wait and see mode now.

Jump to this post

If you are considering a second opinion at Mayo Clinic, here's more information on how to get started: http://mayocl.in/1mtmR63

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1 reply
Ed in Raleigh | @edinral | May 14, 2022

God sakes get a second opinion ! I still have no symptoms ms but my pancreatic cancer has already metastasized to my lungs. My CA19-9 is 241.
PLEASE get that second opinion!

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curious99 | @curious99 | Aug 14 3:42am
In reply to @davidgg "It has crossed my mind. I don’t have any symptoms and it could be something that..." + (show)
@davidgg

It has crossed my mind. I don’t have any symptoms and it could be something that just has not manifested clinically. There is not much research on this topic. From what I can tell, for the majority of reported cases, within two years the underlying cause presents. I think we are sort of in a wait and see mode now.

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Hi,
I am curious if they ever found a cause of your elevated ca 19.9? Has it continued to decrease?

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mayoconnectuser1 | @mayoconnectuser1 | Aug 15 9:03am

I'm with everyone else - please go to a pancreatic cancer center of excellence and resolve this!

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carrie40 | @carrie40 | Aug 16 8:46am
In reply to @colleenyoung "If you are considering a second opinion at Mayo Clinic, here's more information on how to..." + (show)
@colleenyoung

If you are considering a second opinion at Mayo Clinic, here's more information on how to get started: http://mayocl.in/1mtmR63

Jump to this post

Glad to know you check in on things...thank you.

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