High or Fluctuating Chromogranin A Level: What does it mean?
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.
2590 chromagranin A, I know HIGH right. Dotatate scan positive area pancreas and octreo scan showed abdominal and pelvis masses. 1 MRI done after all the lab and positive nuclear scans says nothing there. I am so afraid that with all the positives they are missing something that lab scans say is there.
How high are your levels? Mine are up and down in the 500s but the urine test and Dotatate scan(s) were normal.
My doctors think I’m an anomaly, which I guess is medspeak for “I don’t know.”
Glad to see that you have had a consultation with Mayo. You mentioned that other tests were ordered. Have these been scheduled yet?
As you are comfortable doing so, what are type of tests are you having?
Same as I thought. Octreo scan also done shoeing possible tumors anterior abdomen and pelvis. Had new patient Video with Mayo GI yesterday. He believes MRI, which showed nothing. More tests to be ordered.
From what I read and my experience GaDotatate is more sensitive than MRI. Talk to your Dr.
🙏💜🦓
Dotatate PET completed
Showed suspicious area in uncinate of the pancreas but then MRI did not show anything after that pet scan. ?? Seems like I am just stuck. 2 nuclear tests say positive along with tumor marker labs but tha MRI test I did a week after all of them was normal. Nothing seen.
Has any of your doctors suggested Ga68 Dotatate PET scan? This is very specific for functioning NETs!
Please, let us know how you are and what is next! Prayers for some clear answers!🙏💜🦓
Oh yes 32 lbs loss sine January 2023, can't do more than 2 bites here and there causes fullness and nausea.
I am not a medical professional, so I can't answer your medical questions, @debona2113. That's why I advise you to go to a research-oriented health care institution for a second opinion.
Can you call for a second opinion?
How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level elevated. Nuclear PET and Octreo scan both show possible tumors, curve (uncinate) of pancreas, abdomen and pelvis. LDCT lung scan for smoker shows 6-7 < m nodules in both lung bases. All of the sudden an MRI is done and everything seen on scans is no more? Which tests are lying. It all started with 40 pound wgt loss, diarrhea, cramps, left/right upper abd pain around to mid back, nausea and vomiting bile, headaches, mid back pain ALL since 1-2023.