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

Hi @peg152

It will be good for you to see a doctor who can look more thoroughly at the Chromogranin numbers as well as do other tests. As mentioned by @gsm13161, other labs and tests need to be done to determine the significance of the CgA numbers, such as a 24-hour-urine lab, and other lab work. The combination of tests will give you and your doctor a clearer picture. Given your family's cancer history, I know that cancer is probably your first thought when something is out of the normal range but try your best not to worry about what might be. As I write this, I know that this is easier said than done. (I worry too!)

I have had three surgeries for carcinoid cancer in the upper digestive tract and I understand that any surgery (such as yours for diverticulitis) does set up an environment for digestive problems with many foods. It is good that you have recognized some of those (like high acid foods).

It will undoubtedly put your mind at ease to talk with a doctor and have more testing and a conversation about the significance of the CgA numbers.

I look forward to hearing from you again. Do you currently have an appointment scheduled?

Going to Cancer doc tomorrow!

That is good that you have an appointment already, @peg152. Is this a doctor that you have seen before? Do you have a list of questions for the doctor?

I look forward to hearing from you with an update, when it's convenient.

The doctor says the high chronogrininA means nothing but he ordered a PET Scan to be safe. He said he ran all the other tests last year when it was 1507. He said he will call me if there is anything in the PET. I asked if there is anything I can do to watch on the future as my son, brother have cancer and m mom, grandma, aunt & sister died of cancer. He said no.

I am glad to hear that you will having a PET Scan, @peg152. That sounds a reasonable response by your doctor. I hope you provide an update when your scan appointment is scheduled, and you get the results.

I will. Thank you.

I saw him and had a PET a year ago. They used Dorate 68 for the contrast?

Hi. My Chromagranin A also elevated at 2590, an elevated 5-HIAA and elevated somatostatin level. Octreo scan was abnml for possible tumors abdomen/pelvis and PET scan showed possible area in the uncinate (curve) of the pancreas. LDCT Lungs showed 6-7 small < m nodules scattered throughout both bases. I have been being tested since January this year due to rapid weightloss, cramping, diarrhea, nausea, pain right/left upper abdomen, left side around to the mid back.

I had MRI at Beginning of June that said none of what nuclear scans shows are present, no lung nodules in bases, nothing in pancreas. Nml MRI? I don't understand. How can all other tests be completely wrong? Any ideas?

Hello @debona2113

I am sorry to hear that you are still struggling to get a diagnosis for these health issues you are experiencing. Has anyone suggested a Gallium 68 PET scan? Here is some information about this scan that is the best at detecting NETs and/or carcinoid tumors. This test is more effective than the Octreoscan or an MRI.

--69 Gallium Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
How much weight have you lost since these symptoms began? Are you able to get a second opinion at a research-oriented medical facility such as a university medical school or a facility like Mayo Clinic?

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.