1. < Neuroendocrine Tumors (NETs)

High or Fluctuating Chromogranin A Level: What does it mean?

Posted by kaforester3 @kaforester3, Apr 24, 2020

I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone ever had levels that high and what did the doctor say was wrong with you? I’m kind of freaking out bc they are jumping right in and sending me to get a octreotide scan in the next week. Someone please help me because the GI doctor isn’t saying anything.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

microbe1943 | @microbe1943 | Jan 24, 2022
In reply to @hopeful33250 "Hello @microbe1943 I surely understand your concern. I would feel the same way, no doubt. I've..." + (show)
@hopeful33250

Hello @microbe1943

I surely understand your concern. I would feel the same way, no doubt. I've had three surgeries for NETs in the upper digestive tract and I do realize the value of some of those numbers combined with the symptoms. Whenever I'm faced with a new lesion, my thoughts definitely travel in the same direction that yours are right now. However, as much as possible, I use this place, Connect, to face my fears and try to put them in a proper perspective.

Keep posting here on Connect, keep breathing, and do whatever you can to distract yourself until your scans on the 9th. My thoughts are with you.

Will you post again and let me know how you are feeling?

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Yes. I will post again as tests come in!!! Thank you fir your encouragement.

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1 reply
tdalton61 | @tdalton61 | Sep 4, 2022

Same here. They were high and then go doc ignored it. What is best test to diagnose

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 24, 2022
In reply to @tdalton61 "Same here. They were high and then go doc ignored it. What is best test to..." + (show)
@tdalton61

Same here. They were high and then go doc ignored it. What is best test to diagnose

Jump to this post

You asked about the best test. A blood test can measure chromogranin A (CgA) levels. It is used to help diagnose and monitor carcinoid tumors and other neuroendocrine tumors and may be used along with a 5HIAA urine test. Is this the question you were asking, @tdalton61?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 26, 2022
In reply to @microbe1943 "Yes. I will post again as tests come in!!! Thank you fir your encouragement." + (show)
@microbe1943

Yes. I will post again as tests come in!!! Thank you fir your encouragement.

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Hello @microbe1943,

As it has been a while since you last posted, I was wondering how you were doing. When you posted earlier this year, you were concerned about the high CGA values.

I hope that you are following up and have some more answers now. Will you post an update when it is convenient?

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fightinghopefully | @fightinghopefully | Oct 1, 2022

Dear all, I was diagnosed with NET in 2017. Low grade. Non functional and asymptomatic. Until last year, my chromogranin level was well within the normal range. Yesterday my doctor asked for a test and the result came so scary. 954. My gallium PETCT shows some increase in activity in the liver but this high chromogranin shocked the doctor as well. Has anyone experienced such a drastic increase within a year? Any comments about how to interpret this? It gives me sudden scare.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2022
In reply to @fightinghopefully "Dear all, I was diagnosed with NET in 2017. Low grade. Non functional and asymptomatic. Until..." + (show)
@fightinghopefully

Dear all, I was diagnosed with NET in 2017. Low grade. Non functional and asymptomatic. Until last year, my chromogranin level was well within the normal range. Yesterday my doctor asked for a test and the result came so scary. 954. My gallium PETCT shows some increase in activity in the liver but this high chromogranin shocked the doctor as well. Has anyone experienced such a drastic increase within a year? Any comments about how to interpret this? It gives me sudden scare.

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@fightinghopefully, I can understand that this would have you concerned, especially if your doctor appeared shocked as well. Several members have reported high or drastically fluctuating chromogranin A (CgA) levels. For this reason, I moved your post to this discussion that @kaforester3 started:

- High or Fluctuating Chromogranin A Level: What does it mean? https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/

I did this so you can read previous posts and connect easily with fellow members like @tomewilson @tdalton61 @microbe1943 @musicflowers4u @dbmenger @tracyfurtiscaudle who have experienced high CgA results.

A high result can be caused by several factors. As others have shared, medication can be the cause or conditions of the test or where you had it done. Have you started any new medications lately? Has your doctor ordered to have the test done again to see if it was an anomoly? Or further tests to rule out recurrence?

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1 reply
fightinghopefully | @fightinghopefully | Oct 2, 2022
In reply to @colleenyoung "@fightinghopefully, I can understand that this would have you concerned, especially if your doctor appeared shocked..." + (show)
@colleenyoung

@fightinghopefully, I can understand that this would have you concerned, especially if your doctor appeared shocked as well. Several members have reported high or drastically fluctuating chromogranin A (CgA) levels. For this reason, I moved your post to this discussion that @kaforester3 started:

- High or Fluctuating Chromogranin A Level: What does it mean? https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/

I did this so you can read previous posts and connect easily with fellow members like @tomewilson @tdalton61 @microbe1943 @musicflowers4u @dbmenger @tracyfurtiscaudle who have experienced high CgA results.

A high result can be caused by several factors. As others have shared, medication can be the cause or conditions of the test or where you had it done. Have you started any new medications lately? Has your doctor ordered to have the test done again to see if it was an anomoly? Or further tests to rule out recurrence?

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Thank you for commenting on my question. I'm meeting the doctor tomorrow.

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 7, 2022
In reply to @fightinghopefully "Thank you for commenting on my question. I'm meeting the doctor tomorrow." + (show)
@fightinghopefully

Thank you for commenting on my question. I'm meeting the doctor tomorrow.

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@fightinghopefully, how are you doing? May I ask how your doctor's appointment went and what you found out?

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casualsuman | @casualsuman | Oct 12, 2022

My father chromogranin is 3300,
After the surgery of pancreatic tumor
It's been nearly 6 months
And in the regular checkups, everytime his C.t scan result is good. What must be reason for the high cga at the moment?

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2 replies
thebobk | @thebobk | Oct 13, 2022
In reply to @casualsuman "My father chromogranin is 3300, After the surgery of pancreatic tumor It's been nearly 6 months..." + (show)
@casualsuman

My father chromogranin is 3300,
After the surgery of pancreatic tumor
It's been nearly 6 months
And in the regular checkups, everytime his C.t scan result is good. What must be reason for the high cga at the moment?

Jump to this post

I'm not familiar with this marker. Do you know how it compares to the CA19-9?

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