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

Hello @fightinghopefully,

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

Will you share an update when it is convenient?

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 @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?

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

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.

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

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?

Hello @fightinghopefully ,

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

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.

Has your husband has a GA-68 Dotatate PET? It is the best scan for finding neuroendocrine tumors that frequently do not show up on regular CTs or MRIs. Mine hid for eleven years until I had an intestinal blockage. When I had that scan at Mayo in 3/20, they found quite a few scattered throughout my body.
Certainly increased CgA levels plus the flushing are usually associated with neuroendocrine tumors, but can be related to other diseases.
Good luck in your quest to find some answers, and get a treatment plan that helps your husband's situation.