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

Nah, I don't
Btw here chromogranin means Cga A test

Welcome, @casualsuman. Chromogranin A (CgA) is a reliable serum diagnostic biomarker for pancreatic neuroendocrine tumors. @thebobk, if your pancreatic tumor is not a neuroendocrine type of pancreatic tumor, I'm not surprised that you haven't heard of CgA.

Casualsuman, to connect you with others talking about pancreatic neuroendocrine tumors and CgA, I moved your question to this existing discussion in the Neuroendocrine Tumors group:
- 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 the helpful posts members have made that may help answer your questions and so you can easily connect with members like @kaforester3 @microbe1943 @fightinghopefully @tomewilson @hopeful33250 and others.

While we wait for others to chime in, what has your father's team suggested as next steps for further investigation?

Hello @casualsuman. I'd like to join @colleenyoung in welcoming you to Connect. I've had surgeries for three neuroendocrine tumors (NETs) in the upper digestive tract and Chromogranin A is one of several diagnostic tests used when doctors suspect a diagnosis of NETs. Here is an explanation from the Carcinoid Cancer Foundation regarding diagnostic tests:
--Diagnosis and Follow-Up Tests.
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
When there is a high CgA combined with other markers, a diagnosis of NETs is suspected. Have your dad's doctors said that his tumor was a NET? (This would show up in the biopsy report.)

They suggested that nothing can be said at the moment but since all the Ct scan and MRI results are good, it is very clear that your surgery was okay and maybe chromogranin was increasing due to some other stuff, They even go on to say that in next 3 month regular checkups we will not conduct the chromogranin test cause it can be diverting. At the present, I am deeply concerned that what must be the reason for this huge hike in the Cga level that it has reached 3300 from 1000 in just 3 months.

Yeah my dad have NET.

Hello @casualsuman

I'm wondering what type of scans your dad had. You mentioned CT scan and MRI being normal. Are you aware of the Gallium 68 scan. This type of scan was developed specifically for the imaging of NETs (which are often not found in traditional CT scans or MRIs). If your dad's current hosptial system does not have this equipment, I recommend that you find a larger health system that has one and get a referral for this specific scan. Here is some information about this scan:
--Gallium 68
https://www.carcinoid.org/?s=Gallium+68
and
--68 Gallium Dotatate Positron Emission Tomography Pet-
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
I hope that your dad has an opportunity to have this scan. Will you post any questions you might have?

I have been operated for pancreatic tumor whipple surgery in April 2022. One month after surgery my CGA level was 530. Later on in July 22,when tested the CGA level increased to 2250. When it was tested again in October 22 the level increased to 3300. The dota pet scan and MRI of upper abdomen was also done again in October 22 but no abnormal DOTANOC uptake in surgical bed or anywhere else in the body surveyed. Then what is the reason ,that CGA level is increasing day by day? Is there any medication to restrict/decrease it to normal level.

Hi @casualsuman and @sanjaykumar1. It looks like you may have created 2 accounts - Perhaps son and father?

Abnormal and increasing levels of CgA can be alarming. It is important to talk to your doctor about these results. Fellow patients on a forum like this cannot determine the cause of the rising CgA levels. To know if the levels are related to the neuroendocrine tumors, your oncologist will order further testing.

Although CgA is the most widely used tumor marker in patients with a suspected or confirmed neuroendocrine tumor, CgA testing has limitations.

I think you'll find the information from this website helpful.
- Chromogranin A https://www.testing.com/tests/chromogranin/
Here's an excerpt:
"CgA levels can be elevated in a range of health conditions other than neuroendocrine tumors. For example, CgA levels may increase in people with irritable bowel disease, chronic hepatitis, liver failure, inflammatory diseases, and renal failure. Several medications can also cause an elevation in CgA levels.

As a result, CgA testing for neuroendocrine tumors may produce an elevated result that shows signs of a NET when a person does not actually have this kind of tumor.

Multiple laboratory tests are available to measure the amount of chromogranin A in the blood. Results can vary depending on the test that is used. If CgA levels are being monitored over time, it is important that the same test method be used each time."

ive had intermittent diarrhea and stomach pain for two years dr did chromogrnin a test that was 125. Scared to death that this is cancer what eles could it be. Doc doent communicate with me and dont go back till Nov 7th the urine test was fine and my colonoscopy and endoscopy as well as numerous ct scans show nothing. My colonoscopy said I had divderticulitis and am on pp1 also stool sample came back positive for ibs . can this cause high chromogrnin rate. Had c diff twice r so had alot of colon attention. Really scared about this. Anyone have high no that werent cancer

Hello @reallywells,

I'm glad that you posted your question about your Chromogranin A test. I can certainly understand your concern as elevated levels can indicate cancer. However, please be aware that there are many reasons why these lab results can be elevated. One reason is the use of PPI meds.

Here is some information that I found online regarding reasons for an elevated Chromogranin A test:
--What Causes Elevated Chromogranin A Levels
https://www.epainassist.com/test-and-procedures/what-causes-elevated-chromogranin-a-levels
It is good that your endoscopy and colonoscopy were normal. You mentioned a normal urine test. Was this a 24-hour urine test?

Please know that it is always your right to seek a second opinion if you are not comfortable with the way your doctor answers your questions.

When you see your doctor on November 7, I hope that you will get more information. It would be good to have a list of questions to ask regarding this matter. Have you thought about what you need to ask?