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

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

@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?

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.

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

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

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?

Thank you. Yes I have good support. Your advice is well taken!! I would feel better if my CGA were not 5727. I know PPIS and Ckd Cause elevation but I doubt 5700 width. I was a MED TECK and hospital chemist for a long time so that background is also in play! And I had stage Iv pancreatic cancer 6 years ago and was not expected to live 2 months. So taking a breath is good advice. There is a lot of history and training ti override to do this. I’m mostly successful but I’ve bee sick fir months. It’s not nothing. I know that! Thank yiu for offering good counsel!!!!

Hello @microbe1943

I'm sure you feel concerned! Between the symptoms you've experienced and the high CGA level it is understandable. However, I would urge you to breathe deeply and give yourself a rest from thinking of the worst case scenario. I know this is easier said than done but as you know there are other factors that can contribute to a high CGA.

Since you have a PET/CT scan scheduled, I encourage you to wait for the results and give yourself a break from thinking about this. Do you have a good support group in place? If so, reach out and see if you can make plans to get together and have lunch or see a movie. Whatever you can do for some rest and relaxation is important during this waiting period.

Do you have someone you can call?