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

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?

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

I will. Thank you.

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.

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.

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.

Going to Cancer doc tomorrow!

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?

I’m tired. No cancer diagnosis. Lots of cancer in my family… mom, aunt, grandma and my sister died a year ago from breast, throat & lung cancers… she smoke and drank, as did my Mom. I have diarrhea most of the time, but had a section of colon removed a few years ago due to diverticulitis. Stomach issues with too much acid but haven’t taken any stomach meds since Feb because of protein pump thing, Last Chromogranin . was 1414 even off stomach meds. Thank you for your reply.

A chromogranin level of 1800 is quite high and taking account your blood pressure and a tumor near the adrenal gland for me would be quite alarming. I had high blood pressure and a large 10 cm tumor near the adrenal gland and was referred to a city of hope surgical oncologist. I needed preoperative alpha and beta blockers to control blood pressure as they said I could have a stroke during surgery. The surgery was successful, unfortunately the left kidney and adrenal gland had to be removed. Post-op diagnosis was extra adrenal Pheochromocytoma or Paraganglioma. The two terms are interchangeable more or less. I would ask your doctor to have additional testing such as 24 hour urine and plasma catecholamines as well as 24 hour urine and plasma metanephrine.