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

After going on 8 years as my wifes support person with this disease, I don't worry much about CGA because I don't think I've heard any leading specialist say they put much importance in the single number. They rely on scans, how you are feeling and yes... if the CGA has been trending up the past few tests... that might elicit a 'hmmmm'. We are away from home for three months and a local non NETs expert oncologist ordered a CGA and I declined as not necessary or helpful, plus they are reasonably expensive. My wife Lynn just had one in November 2022. That is just my two cents.

Hello @fightinghopefully ,

It has been a while since you last posted. How are you doing? Any answers yet on the high CgA levels?

Welcome @ttdonnelly.
I moved your message to this existing discussion:
- 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 members like @queenie2030 @hopeful2 @kaforester3 @tomewilson and others.

Chromogranin A (CgA) is a protein released by neuroendocrine cells. A test for chromogranin A measures the amount of CgA in the blood. The test is most commonly used in the diagnosis or monitoring of neuroendocrine tumors.

May I ask why the Chromogranin A test was ordered for you?

Does he also have raynauds syndrome? Look up cold agglutinin disease and related syndromes.
I believe there is also warm agglutinin disease.

My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have never been able to image any tumors after many many scans. He has symptoms of carcinoid syndrome as well. It is very confusing and not well understood. This is just one possibility.diagnosis came from Mayo Clinic visit.

Anyone on here with a high Chromogranin A blood results. Finding it difficult to get answers. Thanks TT.

Hello @sanjaykumar1,

I can certainly understand your concern about the CGA level rising. It is hard to feel comfortable when there is an unknown factor such as this. If the doctor is testing your CGA level, I'm assuming that the pancreatic tumor was a neuroendocrine tumor or carcinoid (NET). Is my understanding correct?

In reading a previous post you mentioned, "Dota pet scan is ok." This is a good finding as I'm sure you know. There are many different reasons for a CGA level to be higher than normal. Here is an article from the National Institute of Health regarding this:
--Clinical significance of elevated serum chromogranin A levels
https://pubmed.ncbi.nlm.nih.gov/15513336/
If you are currently taking medications that are classified as PPIs (proton pump inhibitors) these can also raise the CGA levels. There are other health factors that can increase these levels as well.

Have you approached your doctor and asked about the reason(s) for these higher levels? If not, please do so. Please also remember that it is alright to seek another opinion if you feel your concerns are not being addressed.

As I see that you live in India I wonder if there is a university medical school, or other major medical center, in your area (or nearby country) where you can seek another opinion? It could be an in-person appointment or a virtual appointment.

When has your current doctor planned a follow-up test or other imaging tests? Have you considered getting another opinion?

I have the same issue. I operated for pancreatic tumor in April 22. The CGA level was around 500 in May 22.When tested in July 22,the level was 2200.When last tested in October 22,the CGA level was 3300.The doctor is just saying WAIT and Watch.I contacted 3 oncologist but no one ha solution for it.

Hello @fightinghopefully,

I hope that your appointment last month provided you with some answers.

Will you share an update when it is convenient?

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?